Update on Lois
Our Latest News...
For all of our friends and associates who wish to keep updated
on the condition of Lois Sugar, we will keep this page updated
with the latest information. Lois had a major stroke on October 21, 2003.
She has been through a great deal but continues to make progress
in her recovery. She moved home in October of 2004. She has around
the clock aides who assist her. The following are updates of things
that have occurred in her life since the stroke.
This web page is updated by David Cyr. He can be reached at
Lois Sugar
38 New Amsterdam Ave
Buffalo, NY 14216
LOIS NOW HAS EMAIL:
She would love to hear from you!
News & Progress
April 2007
After some discussion, it has been determined that we will not continue to update this site. There really has not been much to report of late and progress has slowed. We will update this if there are items of great interest.
Thanks to all who have followed Lois’s progress over the last three years. Your thoughts and prayers have been greatly appreciated.
David Cyr
Lois and all had a good Thanksgiving. We have gone for years to a nice restaurant near us in the city. They do an extensive buffet which we really like. The only year we have missed in close to 10 years was the year of Lois’s stroke. Howard, Lois’s brother, has joined us for the last few years. But sadly the restaurant is closing to allow for development of a high rise, high priced apartment building. We will be seeking out a new place so that the tradition might continue.
Lois has started speech therapy again with an old friend Maggie who was her therapist some time ago. We asked for her when we called to start therapy in hopes that we could get her and we did. She is working with Lois twice a week. At this point the health insurance has approved 12 visits and if Lois shows progress they may approve more. When you sign up for health insurance they tell you that you can have so many visits (40 in Lois’s case) but what they don’t tell you is that from the first one they fight to get it stopped. You have to provide all sorts of reports that prove you are making improvements and if it is deemed not worthy by the health insurance company your treatment is stopped. This is why we have paid for therapy instead of relying on health insurance. A real bummer sometimes.
Well Lois and I survived the early surprise storm on 10/13/2006. More than 75% of the city was without power – some for over a week but neither of us lost power. Lois had many trees down in her yard including a very large one that landed on the house. The roof was fine only the gutters were damaged. We were also lucky to find someone to take the trees down and haul them to the front curb. A couple of the aides ended up staying at Lois’s for several days. They did not have power at home and could not get home as the city had a driving ban and the buses were not running. Work has now begun on the ramp in Lois’s garage. This will make it so much easier for Lois to go out. We have struggled with the stairs for two years and with winter coming it is dangerous taking her down the stairs. Lois continues to have bio feedback but the last few apts have been canceled due to the storm. We hope to be back on track next week. Lois is working on trying to be up more during the day and sleeping all night. Currently she is up at night and sleeps all day which is not good for appointments and visits.
Lois took her scooter for a ride around the block today. It can go very fast – much faster than the loaner. I have had to tell the story of the scooter run amuck several times. It is still very funny. Bio feedback continues and changes are happening. Not sure what they are yet. Another treatment this week.
After much work and waiting and waiting, Lois FINALLY has her new scooter. Between the paper work and dealing with the insurance company and the company that provided the scooter, the whole thing was incredibly exhausting and very frustrating. But today was the payoff. They delivered the long awaited scooter. Lois also had ordered a new mattress for her bed. It was also delivered today. The workman who delivered the scooter carefully showed Lois how to operate it. She had used a loaner scooter before but there were some different features. So Lois wanted to watch the bed being installed and she carefully drove her new scooter into her bedroom. Then is when a very funny thing happened. Lois was in the bedroom in her scooter and she wanted to turn around so she could watch the bed being changed. (Note: one of the delivery guys were very attractive)( you have to make your own fun sometimes!!) One of Lois’s aides was going to help her turn around so she tried to use the controls but instead of backing up the scooter went forward and did not stop as the (unnamed aide) did not take her hand off the control. I am standing in the doorway of the bedroom watching as the scooter continued to move forward knocking over night stands and things went every which way. Lois is only able to say “NOOOOOO.” No one was hurt and then we all started to laugh and laugh. It was very funny and we have laughed about it several times. It could be one of those “You had to be there” stories.
I am sorry for the lack of updates. Having THREE jobs has finally caught up with me, I guess. (Lois, NewsTrax and Copper Wire) There has not been too much that is new. Mostly just day to day stuff that is not very exciting.
Lois is doing good. We started Bio Feed Back a few weeks ago and she really thinks that it is helping. We leave at 3:30 PM every Wednesday and not back until 6 PM. The rush hour traffic is bad but it gives us good time in the car to talk and laugh. We hope to be able to stop for sushi or dinner some nights.
The battle over the power chair/scooter is ongoing and brutal. The paper work and follow-up it incredible and now the health insurance says they don’t think she should have one. It is just incredible. We are continuing to push.
She is thinking of getting a dog (AGAIN) so we are looking at the places that train dogs for the disabled. She wants a therapy dog or the like but big enough to be a guard dog also.
We are working hard on trying to get her to be up during the day instead up during the middle of the night. She is fighting us on this but we may be winning. We have had a number of issues with aides. Why is it that WOMEN cannot work together without the “Catty” factor? Michelle was living at the house but that did not work out for her—she wont tell up why. So she has moved out and is back to a 40 hr week. I suspect is it all about money. She thought that she would make the same per hour for all the hours that she worked and Lois wanted to pay her $200 a month. We settled at $200 per week but still not enough for Michelle I guess. So we are back to trying to find ways to save money.
Wow, I can’t believe that it has been this long since I updated. The biggest update is that Lois hates the power chair that she has had on loan. We can’t really figure out why but she just does not like using it. She wants to try a scooter and we are making those arrangements now. She has been treating this whole process much the same way she would buy a car. Lois continues to have improvement with PT. Nick has been working on some new things that seem to be paying off. Lois is able to hold up her weak arm much longer and even able to squeeze a ball with her weak hand which is exciting. She does however continue to sleep a great deal and often is too tired to go on outings. We tried for several days to go to the grocery store and finally I just had to go to get her groceries. She still is up late at night and sleeps until past noon. Her brother Howard came to visit at the end of March for a few days. We did go out to dinner one night when Howard was here. We are having some trouble with several of the aides. (Why grown women cannot get along is beyond me!) We might make some changes soon as Lois would like to try having some time alone. We have had 24 hr coverage since she came home from Weinberg. More work is planned on her house to enable her to more easily get to the back porch or to get out the front door. We are also planning a garage sale some nice weekend in May.
Lois now has a fancy electric wheelchair for a two week trial. She was a little afraid of it when she was training. She also felt that the salesperson “talked too fast” for her to totally understand the machine. It is nice and does go into all rooms including the bathroom which her other chair does not. There may be a few marks on the doors and walls for a while but so far it seems like it should be great. We need to get a ramp to see if we can get it into my SUV.
Lois and I went to the CEL meeting last night. We had been warned that the meeting room was upstairs with no elevator. But they said they would help us. So after happy hour and it was time to go upstairs for the meeting, two huge, football player like guys came and carried Lois in her chair up the stairs. The look on her face was worthy of an entry here. Her eyes were wide and a big smile on her face. We then enjoyed the meeting and a nice dinner. When it was time to leave, the big guys came back and carried Lois down the stairs. She thought that was the best part of the night.
We had a meeting with a wheelchair company yesterday. Lois wants to try a couple companies and see who has the better deal. This one comes recommended from the CEL group as the owner is a graduate of the program. The salesperson was nice and recommended a very nice chair that would be able to maneuver around the house. They will bring it over for a couple weeks of trial. This maybe more than we had intended to spend – we are still trying to determine how much the insurance will cover.
March 10 was Lois’s birthday. She says that she is still mad at me for the birthday party I thru for her when she was at Weinberg. I guess that I was not suppose to tell people how old she was. Opps! We went to dinner on Sat 3/11 to a place that Lois used to love before her stroke. Her friends Pat and Sharon joined us for a wonderful dinner. The restaurant has changed hands since Lois was there last over two and a half years ago. The son of a local weatherman is the new owner. When we wheeled in with Lois the weatherman was there seating people. He remembered Lois and we had a nice conversation about our business and the new restaurant. Lois then pulled out an old business card that had a recipe for the “Perfect Cosmo.” The card was from the old owner of the restaurant and caused quite the conversation around the room. Many had to come over and see the card. Lois was careful to get it back. The bartender then used the recipe to make Lois a Cosmo. It was not “perfect” she said but very good. We enjoyed a great dinner having such things as Butterfish and Bison. We always order different things and then share them. We had a fun waiter who was very entertaining. Lois told him he had a great voice for radio but he was never in the business. Full and exhausted we went home.
Lois had a general check up at the doctor yesterday which went very well. The doctor had a student working at his office. Lois said to him “You are very young.” To which he just laughed. But she pushed it “How old are you?” When he said “25” both Lois and I looked at each other and laughed. We were pretty sure we have socks older than that. He was a good intern however, asking lots of good questions and making notes that looked like they could be read. Lois decided and told him that she thought “He would make a very good doctor.” The primary doctor went through her recent blood test results and reported that everything looked good. Her cholesterol was down and in a good zone and her blood pressure, thyroid, sugar levels were all good. He asked us about the meds, and we went through all of her medications. Our biggest complaint is that we can’t get refills all at the same time. So the Doctor rewrote all the scripts for the same date and said to try that. Lois was feeling great after the apt. so we went to visit the electric wheelchair store which was nearby the doctor’s office and near a restaurant we wanted to have dinner. Lois was able to try out a couple chairs. Which will be more like scooters as they will be easier to get in and out of the car and easier to operate around the house. They were closing the store so we will need to go back. They are going to set up a demo for her with the controls on the left to make it easier for her to operate and she will be able to take one home to try for a while. Still feeling great and with lots of papers and things to think about, we headed off to dinner. Lois decided to go to a place that we have not been since her stroke, Tsunami, a great sushi place. We ate and drank sake and laughed. We did not get home until after 8 PM. Lois had been up for 6 hours and was exhausted but we had a great time.
Lois went to a CEL meeting last night. This was her entrepreneur group that she so loved before the stroke. We have not been out much this winter. It has been either cold or snowy and both make it difficult for Lois to comfortably get out. We went a bit late so that it would not totally exhaust Lois as it sometimes does. We had a glass of wine at the bar before the meeting and talked with many of the members from her class. They all sincerely like Lois and miss her input. Lois did great at the dinner eating most of her steak and all of the veggies. She even asked the waitress for coffee on her own. During the meeting they went around the room to let everyone ask questions or make comments. Lois participated in this also and contributed to the meeting. These are the type of things that she so loves to do. However, the down side is that she will pay for it for a day or two after by sleeping all day. It is worth it she says.
Lois had her appointment with Dr Garbarino yesterday. This was a long awaited and feared apt. as we assumed he would have news that we did not want to hear. We were very apprehensive about this meeting as last time he told Lois that he thought she might have reached her potential. We did not want to hear this again as we do not believe it. Our apt. was at 2:20 PM and as always we were a little early. When we checked in they told us that there were only two ahead of us. That sounded good, and we hoped to get in and out quickly. The nurse came in to take down all the vital info and take blood pressure and the like. She then said the Dr’s student intern would be in shortly. We then waited for over an hour with no one coming to see us. Waiting has never been something that Lois or I like but we made the best of it with stories and remembering funny things that happened to us in the past. Finally the Student came to ask a number of questions. Lois was starting to get tired. Then the Dr. came in. We had seen his picture on the cover of a local magazine and mentioned it to him. He was named one of the best doctors in the whole Northeast. He wanted to know if we had the article and he would autograph it. Darn we had forgotten the magazine. But, Anyway…! So he then proceeded to ask lots of questions. Lois then showed him how well she can walk. She got up on her own and walked around the room with her walker. She also showed him how she can now raise her right arm and can squeeze your hand a little. Well, all of this impressed the doctor. He told us that only 1% of major stroke victims make progress 2 years after the stroke. We knew that Lois was special but now we know that she is in a special 1%. He said he was very impressed with her progress and predicted that the progress would continue. He was also going to help us get into a Stroke Support Group. We laughed and almost cried all the way home. Lois was exhausted from the waiting and the whole ordeal of transferring to and from the car, but she was happy. “It was a very great day.”
Again, I must apologize for not updating this log. There have been a few things to note. One Lois had her follow-up mammogram and everything is good. This of course causes us great stress as we anticipate the date of the appointment and then wait for hours in the doctor’s office. Then we have great joy when all is fine. Other things of note include giving Rosa, one of the aides, more responsibility to help me with the day to day operations. She has taken over the prescription procedures and many of Lois’s appointments and ordering. Rosa has been a great help to us.
Lois continues to have improvement in physical therapy. The new guy Nick has been excellent! He has created a big chart with all of Lois’s exercises that can be done at anytime during the week. We held a training program with all the aides to demonstrate how the exercises are done. There has been improvement in the arm including a little movement in the hand and wrist. We are working on getting an electric chair for the spring so that Lois can be more mobile outside.
She continues to enjoy all the emails that are sent. However, she does ask that you not send so many jokes as it is hard to get thru so many. She does not check her email everyday but more like once a week. An aide or I will help her to respond.
Lois and I were planning to do our usual Christmas ritual – go to a movie. I had planned to work a shift at Lois’s so that two aides could spend the day with their family. Unfortunately, Lois was too tired to go out. We did update her email, cleaned out some old files and played a game Lois and I like. I would read from a book of two minute mysteries then we try to guess the answer. Lois is very good at these. On of the mysteries had to do with the way squirrels go down a tree. Lois knew the answer from all the hours of watching the squirrels from her dinning room window. We then searched thru her books and found several books of 5 minute mysteries and read a few of those also. Lois thought it was a great day. I enjoyed being with her longer than just a short visit.
Lois has a doctor’s apt. on Wed, Dec 28 for a follow up with Dr. Garbarino. We don’t really look forward to this visit as last time he stated that he felt she may have reached her potential. They will reevaluate Lois and see if there has been any change or improvement over the past three months.
If you have been sending Lois emails, thank you, she does enjoy hearing from friends and colleagues. She does not check her email everyday and sometimes it may get checked only once a week.
Lois had a visit from her neurologist last night. He actually made a house call. He had told us last time were we in that if the weather was bad he would come to her, and he did. She had a list of things to go over with him and all seems good. He is the first doctor who actually said she would get use of her limbs. She has continued to improve in movement. I am amazed at how high she can raise her weak leg. This could be due to the hard work from Lois and the new personal trainer, Nick. He is a graduate student in PT and worked as a personal trainer at a gym Lois used to belong. Lois just called there one day and spoke to the owner and he recommended Nick. It has been excellent. He works her hard and charts her progress. I have a session with him in Lois’s basement after her session. So far I like it too.
I need to be better at updates. It has just been such a busy time and things are going well. Lois had a couple of special tests last week to study the flow of blood in her arteries particularly in her right side. The test was interesting and we await the results. The health insurance covered therapies have already stopped. This is very frustrating. Lois has a new massage therapist who used to be her personal trainer several years ago. We have gone back to the private pay therapists that we were using while at Weinberg. Lois says it is good to see them again. Once a week or so, Lois and I count out all her pills and put then in special containers by day and time. Getting the prescriptions refilled at the right time is also frustrating. We would so like to have all the pills refilled at one time a month.
Lois has been working on rhythm in her speech lessons. The speech therapist recommended they we get her some Dr. Seuss books as the rhyme would be fun and good practice for her. I have to admit it was fun looking at all the book and the vague memory of reading them or buying them for nieces and nephews many years ago. I wonder of Dr. Seuss ever considered that his books would be an important part of speech therapy for stoke patients. More movement is showing up in her right arm. She is able to hold an adapted spoon or fork and raise the arm almost to her mouth. She is working on this very hard as she wants to be able to eat with her right arm someday.
Lois, her brother Howard, Judy, Christopher and I all went out for dinner for Thanksgiving. Lois and I had gone to this place in previous years. They have very buffet with lots of special/good stuff to eat. I called a head and had a table reserved right by the fireplace. Lois is cold a great deal and I thought it would work for her. It was great! We had a lot to be thankful for over the past year. We ate until we could not eat another bite and Lois even had more than one glass of wine. By the end of the meal Lois was exhausted and so were we. Nice naps for everyone today!.
My apologies for not updating this site. No really good reason. I have just been busy.
Some news to report: Lois has been riding a special exercise bike at the Wellness Clinic that we go to. It is an excellent workout for her. They strap her weak leg into a boot like contraption that keeps it secure and helps to avoid injury. Lois noticed that one of the machine at the clinic needed new Velcro straps. We were able to find them on line and purchased the straps and donated them to the clinic. This program has been excellent for Lois and she wanted to give something back. The program is basically free to the public. More news includes having a new PT person. Nick has been with us for a few weeks now. He is a grad student in PT and is working as a personal trainer at a local gym. Lois called the gym where she used to work out and they were most helpful at finding her a personal trainer who just happens to have degree in PT. So far he has been excellent and works Lois very hard at here sessions. He comes two or three times per week.
More news includes: Lois has gotten a little more feeling back in her face. She was very tired for two or three days and then she woke up one day and could feel her face on the right side. This is exciting as it means she is still improving.
We are continuing the have the 24 hr coverage for aides. Lois just feels more secure with someone in the house. We have an excellent group of workers who really care about Lois.
Lois now has email. It is her old email address at NewsTrax. lsugar@newstrax.com She would love to hear from you. While she is unable to do the typing, one of her aides or I will assist her with a return message. Short funnies or humorous photos or graphics are also enjoyed. But she asks that people not sent long stories or jokes.
Lois had to have a big portion of her roof replaced due to damage from a storm. We have contracted a handyman to assist with some other odd jobs around the house. We have decided to get a lift for the garage as the ramp was not working out. This will make it easier to take Lois on outings. It will also be good for when she gets an electric wheelchair. We hope to get the chair in the spring.
Lois had her meeting with the local doctor who is known for his ability to review a person’s whole life as it currently is and make recommendations for the future.
We are sort of letting it sink in a bit but I think that it was basicly NOT good news.
They spent almost 4 hours with us. She was interviewed by a social worker, had a complete physical by a MD, asked questions by nurses and then spent 45 min with the top doc who evaluated the whole thing. I think it was very complete. But the bottom line is they feel that she will probably not get much better than she currently is. It will be two years since the stroke in just a few weeks. They feel that most of the recovery will have been made a by this time. They discussed some experimental drugs that have been working for some stroke victims but the side effects are great and include causing another stroke or seizures.
The Doctor was young (40) and Lois’s comment was “what could he know” We had expected a much older, gray haired, man with a slouch and a worn white coat. He is the most respected doctor in life planning in this area—but then again Brother’s of Mercy was very highly rated.
Lois now is getting my cold so he is staying in bed. I know that sometimes she goes to bed and stays there when the news is not to her liking.
Most of what the doctor said made sense and is probably correct. In a way I am glad that someone had the conversation with her as many of us may be thinking the same things. He wants to see us again in 3 months so we will see what happens. He promised to speak with several neurologists about Lois and her condition and see if they had any new thoughts.
Lois attended the Buffalo Broadcast Pioneers award ceremony last night. This was the first time she has attended this group since her stroke. We sat at a table in the back with a man who proudly announced that he was 99 yrs old and was on the air for WBEN radio when they first started 75 yrs ago. He was mentioned during the ceremony but was not one of the honorees. It was fun. We had dinner and a beer and then left as soon as her friend Rich Kellman received his award. Lois was exhausted from this event. We were also surprised that several of the people at the event did not recognize Lois. One admitted that they thought she had moved away.
Could not go to exercise tonight. Lois was too tired and I had too much work. We are trying to go twice a week—Tuesdays and Thursdays. Next week we have a ton of things happening. Doctors apts for both Lois and myself and several outings that should prove to be great fun. Should be some good updates next week. A handyman has come to give us quotes of doing some things at Lois’s house including having a ramp added in her garage to make it easier to get Lois out of the house.
Funny Story: Lois has been going to exercise for several weeks now. I have been going to assist if need be. Tonight I was helping with the rowing machine where she pulls a bar down to her lap. I have to hold her weak hand on the bar to keep it from slipping off. We were have trouble keeping the bar straight so I was using my other hand to stabilize the bar. Lois wanted me to move my hand but she for some reason could not tell me to move it. So she “licked” my hand and tossed her head to get me to move it. Well, I lost it right there in the gym. And we both burst out laughing. Several of the PT students came over all concerned that something was wrong. We were laughing so much that we could not even tell the story. (maybe it is one of those “you had to be there stories.” But we thought it was funny.)
I have just updated the site with a few entries that I have been holding. So many people have asked for an update I guess I have to keep this going. Honestly, the last few weeks have been very difficult for both myself and Lois. That makes it hard to update. I promise to try to be better at updates.
Lois had her regular check up from her neurologist. She had a number of questions including could she take aspirin if she had a headache and should she take a multi vitamin? She also asked him about the sleeping during the day and staying up at night issue. He suggested that she switch one medication that can cause hyperactivity in some people. She switched the next day but it seemed to have the opposite affect. She has been sleeping almost constantly since the switch. Drugs are crazy.
It has been a sad time at Lois Sugar’s. They say that sometimes bad things come in threes. Last week a woman who worked with Lois as a aide was killed in a house fire. She went back into the burning house to save her children and in turn was killed. Milgene Smith had three small children. “Janene” as we knew her used to work the overnight shift some months ago. This was a very sad story. Then a short time later the daughter in law of Maureen (another aide) died suddenly at 29 yrs old. She was also the sister in law of two other aides, Shareese and Sharon. Then two days later the father of the girl who died was so grieved from the death of his only daughter died of a heart attack. They had a duel funeral. Both of these untimely deaths even made the news in Buffalo. Our heart felt sympathy goes out to these two families.
In the middle of all this NewsTrax moved its offices to a smaller space. Many issues have caused us to do a major downsizing. Who knew how much stuff one small company could collect in 10 years. Our new digs are great and though it is smaller it is good. We have plans to switch all taping to digital recording and are participating in a new product, which will dramaticly improve our products.
Lois and I had a great night. First we went to exercise at the PT place at Degraff Hospital. This program is run by Dr. Susan Bennett and is a part of the program that we did not get into. They run a special exercise program for people with strokes or MS. Lois tries to go at least once a week and sometimes twice. I take her on Tuesday or Thursday and her PT Linda sometimes takes her on Friday. Lois goes thru a number of exercise machines that are designed to help her range of motion and stretching. While she is doing this I ride the exercise bike for 30 minutes. Good for me and for Lois. Well, on this day we had had a great workout and were feeling pretty good so on our way home we decided to stop for dinner. We went to one of Lois’s old haunts called “O” which is a fancy sushi restaurant. We started with a BIG bottle of sake (warm) and three appetizers. We then shared a great roasted duck entrée. We laughed and had the best time in a long time. We lan on doing this more often.
I am sorry that I have not updated again. We have had a great deal of stress in our life and it just didn’t seem like the best thing to do. Now I can tell the story of the stress as it has worked out well. On Lois’s recent trip for her annual mammogram we got a bit of a scare. There was a spot of the first test which then required a sonogram which in turn required a biopsy. Lois’s mother died of breast cancer so there has always been a fear. The days between the tests and the wait for the results were incredibly frightening. Lois went into a bit of a shut down mode and slept a great deal. I tried very hard to keep her mind off the issue. We watched movies and tried everything to not think about the outcome of a bad test result. However, the results were good it was NOT cancer. Big sigh of relief and we now go on.
Sorry for not updating the site recently. Honestly, the news has not been that great to report. After trying for many months to get into the special research program offered thru the University of Buffalo. We did get the final word that Lois would not be included. She just cannot move her arm enough to be a part of the study. In turn they did recommend a new type of procedure that might help Lois with movement. It is quite evasive and we are going to look into it much further before moving on it. The issue is a small pump that in implanted under the skin that then pumps medicine directly into the spinal column. This way the medicine does not go into the blood stream and make her so sleepy it just goes into the muscles and allows them to relax. We will speak to her neurologist about this and try to find some people who have had it done and see how it works for them. Lois was quite disappointed on the decision not to include her in the research program. Maybe we put too much emphasis on it as a vehicle for improvement. The heat here in Buffalo has been extremely hard on many and Lois is one of them. She did not have AC in other rooms of here home (just the bed room) so we bought a big window unit and installed it. Now it is more comfortable at her house. She did go swimming once at her neighbor’s home. Her personal trainer Frank took her into the water for some hydro exercise. Lois spent hours looking for a new bathing suit in catalogues. Some had to be returned and reordered. It was fun Lois reports and yet extremely exhausting. She slept the whole next day. One bit of new GOOD news is that suddenly Lois has regained the feeling in the right side of her face. She had not been able to even tell if food was pocketed in her right cheek. No real reason for this return. It just happened one day. Let’s hope it is a sign of improvements to follow. I promise to be better about update. A very busy summer here.
Lois and I went to one of her CEL meetings on Wed night. This is the entrepreneur group that she so loved. We met her friend Pat there. When Pat registered us there were three choices of dinner: pasta, beef and chicken. So she just ordered one of each. When we sat down for dinner it was decided that Pat would have the beef, Lois the chicken and I would have the pasta. When we all looked at it no one liked what they saw. So we all ended up trading and passing plates around the table. Lois ended up with the pasta, as it was little tortellini, which she could easily get with a fork. Pat had the chicken as she was on a diet and the beef was excellent. So it worked out great – and of course we laughed about the whole thing. The meeting was fun and as always everyone loved seeing Lois. We helped her into a tall bar stool before the meeting in the bar and it put her at a better height for people to speak with her – not so much bending down when she is in her wheel chair. The meeting was good – all about sales. The bad part was that it so wiped out Lois that she has slept for two days. The heat has been tough the last few days. We had a new air conditioner installed in the dinning room as Lois spends a great deal of her time at her dinning table for speech therapy and other things. She already had an AC in the bedroom. The new aide schedule seems to be working out and they work out changes among themselves, which is very good for me. They all love Lois and what to be sure that she is covered.
It has been a rough couple of weeks, but all is well. The departure of Judy was a real scramble. We had to find coverage for Lois’s care and in several cases even work the shift. I spent several overnights a Lois while we were reorganizing the aid schedule. Several of the original workers are still with us and we have greatly simplified the schedule to the enjoyment of all. Lois has been working on developing a more day oriented schedule. She was working on a body clock that made her be up all night and sleep all day. This made it difficult for therapies and visits from friends. It was very tough for a couple of days and now it seems to have falling into a good schedule. We will be seeking a new coordinator for Lois. Someone who can coordinate her therapies and life schedule and can set up and track goals. This person would be kind of a case manager for Lois.
The news of the day is that Judy has quit her job as head aid. We are scrambling to fill her time slots and are working to reevaluate all of Lois’s care and needs.
A very exciting day on Saturday (5/14/05). When I arrived to visit, Frank, Lois’s personal trainer, was into his session so I did not interrupt. I decided to fill the bird and squirrel feeders. The aid came to get me saying “Lois wants to see you NOW!” Yikes! That always worries me. When I got to her room she had that big smile that I have seen before when she has something amazing to show me. “Watch this!” she said. While Frank was holding her weak arm in place Lois was able to bend her arm at the elbow and almost touch her face. This was the first time this type of movement has happened. Now this was exciting! The arm movement has been limited to the shoulder only. She has been able to slightly squeeze my finger with her fingers. But there has been no other movement in the arm – until now. This may be helpful for her to get into the Susan Bennett program.
It’s a small, small world story: Several months ago Lois tried to get into a unique research program here that had great success with stroke patients. We met with Dr. Susan Bennett and found that Lois did not quite qualify due to not being able to move her hand and arm to the study qualifications. We then tried again to convince Dr. Bennett through Lois’s neurologist and through her physical therapist without much progress. We had all but given up on the idea of being in the program. On Tuesday night Christopher and I went to a fundraiser called Dining Out for Life (a present of the proceeds from dinners at a number of local restaurants were donated to local AIDS groups). The guest hostess at the restaurant we went to was none other than Dr. Susan Bennett. With little to loose, I was able to speak with her and state again how interested Lois was about being in her program. It could have been the more relaxed setting (i.e. a little wine) or Dr. Bennett is just getting tried of our persistence, but she told me that they were starting a new research program where individuals who could not quite get into her other program could start and hopefully progress into the higher-level program. This one gives being in the right place at the right time new meaning.
Also, one of our excellent workers (Janette) noted a news story in Rochester, NY about a new type of devise that helps stroke patient’s rehab. The doctor who designed the machine was Dr. Tom Sugar. (Lois’s first husband and the one she kept the “Sugar” from was named Tom) He did not look like her ex-husband she said. I have contacted the company for more information using the “Sugar” angle as a way to get in. The clinical trials are currently all in Arizona but we have been sent info on the device and it may be possible to bring a study to Buffalo with Lois as the first patient. This device helps a person who has lost use of the hand and arm by helping the individual move the limb with air driven hydraulics and repetitive motion. It just recently received FDA approval and has shown great success in early trials. Stay tuned for an update on both these issues.
Big news today! When I went to visit Lois at lunch time today (which I do almost every day), she was sitting in her wheelchair and had a great big smile. I of course said “What’s up?!” as she looked like she was up to something. “Watch this,” she said. And without so much as a pause she stood up from her chair unassisted and took her walker (a four legged light metal contraption that sort of looks like a step stool) in her left hand and proceeded to walk across the room. And it looks like walking, not the dragging the weak leg behind her that has often been the case. She then made a big circle in here living room and come back and sat in her chair all totally unassisted. This was incredible. She has needed assistance during all her walking before this point. Much of it was her fear of falling. The new brace is really working. It has given her more confidence and reduced her fear of falling. She then said that she is now getting in and out of bed on her own and making her way to the bathroom – unassisted. This is a major step toward more independence. After this great show, however, she was exhausted and only lasted a few minutes before being wheeled off to bed.
Lois continues to improve. We have been able to go to the grocery store twice. These are very short trips and they totally wipe her out but she says that it is great fun to get out of the house. We enjoy shopping more in the city as apposed to the suburbs. We get less attitude from shoppers about the wheelchair in the city. Lois went to her neurologist yesterday. This is the very attractive doctor who was really the first one to say that Lois would regain movement in her leg and arm. She really likes going to see him. He takes time to answer all our questions and offers to help where he can. Yesterday he offered to put us in touch with some support groups for people who have had strokes. Lois is most interested in this. He was also able to help us get a handicapped sticker for my car so that we can park in handicapped spots when we are out. The doctor stated that there is no reason why Lois cannot continue to improve. They used to say that the improvement you had gained in one year was as far as you could go. But hard work and much therapy have proven that this is not true. Some stroke patients continue to make progress many years after the stroke. Lois was able to walk for the Dr. We had forgotten to bring her walker so he just held her up and walked with her up and down the hall. Lois later said that he smelt very good. Lois and I have made a list of all the things that need to be done for the Spring. These include gutter work, some painting and repairs to doors and possibly having a ramp built to make it easier to get in and out. Lois was always a big list maker and this continues. We will be hiring some handyperson service to assist us.
Lois was greatly missed at the IABM (International Association of Broadcast Monitors) meeting in Washington DC this weekend. Many asked about her progress and told me that they continue to follow the updates on this site. She misses the involvement and promises to return one day. This was the first meeting I have attended since her stroke. At first I was worried about leaving town, in case there was an emergency. Now, we feel that there is little risk of an emergency and I can go about my regular schedule. Much is happening in our industry and I was able to update Lois after I returned. She said it must have been an excellent meeting (Which it was!).
Lois loves to watch the squirrels and birds in her back yard. We have set up a number of feeders, some I have even made. She has 5 or 6 squirrels that feed regularly. It is amusing to watch them. They even have different personalities. One only has a stump for a tail. Lois is looking forward to being able to sit on her back porch and watching the birds and squirrels this Spring. Lois continues to make progress with relearning her numbers. She has been able to read numbers and even count by 2s and 5s. This is great progress, as only a few months ago she had basically no use of numbers whatsoever. Her speech therapist said that it would just take time and she appears to have been right. Lois’s brother Howard came for a short visit last week. Today Lois received her new brace that will help her walk. It turns out that the brace that was prescribed at BM was incorrect and was not for a person who is walking. They told us they felt Lois would not walk. We plan to “walk” out there someday and show them how wrong they were. This new brace is much bigger and has more straps for support. It will keep her ankle from turning when she walks and reduce the possibility of a fall or injury. Lois and the aids continue to work jigsaw puzzles. They have done almost all the ones that we had at the Office. I will hit some garage sales soon and buy some puzzles.
Lois had the best time at her CEL meeting last night. Many of the people at the meeting had not seen Lois since her stroke. She quietly held court from her wheelchair at the bar before the meeting with each person coming forward to see her, give a warm greeting or cheek kiss and speak with her about how they were doing. They were all patient waiting for Lois to get her words out and point across. The dinner was good. Lois had fish and I had stuffed pork chop. They even had a toast welcoming Lois back to the meetings. The program was most interesting with several speakers discussing their views of the future of Buffalo. We played our game of “Show and Tell – You First” in the car on the way home. This has always been our way of recapping a meeting or event. We had a very good time! We left Lois’s house at 5:30 PM and did not get her home until 9:30 PM. This is the longest outing we have ever had. She was exhausted but very happy. I predict that she will sleep all day today – but she said it would be worth it!
Lois received a large number of cards for her birthday on March 10. So many came that she could not read them all. It makes her very tired to read more than a few pages of material. I read most of the cards to her. We then talked about each card and things we remember about the person who sent it. Memory is something that was not affected by the stroke. Lois’s brother Howard is coming to visit in a few days. We also have plans for a couple of outings. I asked Lois the other day if she was tired of being indoors all the time. She shrugged and said no. We are going to a dinner meeting of her old CEL group. (A group of entrepreneurs who get together to talk shop). We are also going to an art auction on Sunday afternoon. Mostly this one is to do something different and of course for the food and drink. The art auction was something that her speech therapist recommended. We were going to do it last year but for some reason did not – could have been weather or Lois was just unable to make it.
Today is Lois’s Birthday and as a present she got her basement flooded. What a mess! A few inches of water everywhere in the basement. Luckily she has most of her stuff up off the floor as this has happened before. Roto Rooter was able to fix it quickly and the water subsided. I spent much of the afternoon sweeping water to the drains and brought some big fans from my house to help dry out the floors.
Continued good days for Lois. She continues to work on speech and mobility. She is able to get in and out of bed by herself. Lately she has enjoyed sending short notes to people from whom she has received a card or letter or gift. She is not able to write them out herself but can dictate them to one of her aids and then they are sent out. If anyone would like to send Lois a card or letter, please do so. She would love to hear from everyone. (Note: Lois’s birthday is March 10). Her brother Howard will be back for a short visit. Tonight Lois and two of her friends and I will be having dinner at Lois’s. About once a month we try to do this. We order take out from one of Lois’s favorite restaurants and pig out. We laugh and lament and enjoy ourselves and then make plans for next month. We hope that someday Lois will be able to go out to the restaurant with us. But now due to the winter weather and the whole process of getting out which is too exhausting for Lois, we will be happy with take out.
Lois had such a good day! When I visited at noon she was simply beaming. She said she felt good and had been able to transfer by herself to her chair from her bed and to the bathroom all by herself. But even more exciting news. Lois then told me that she was able to count by 10s with her speech therapist Maureen. Numbers have been so difficult for Lois. She was not able to do it again for me but assured me that she had done it and could do it. This is great progress. Lois has a few new nurses aids all seem very nice. The squirrels continue to amuse us.
Not much to report so I have not updated lately. Lois continues to make progress in all areas. Her speech therapist says Lois continues to improve in sentence structure and is not repeating words. (preseveracation SP) Work continues on numbers and vocabulary. Lois and her aids have been enjoying working on jigsaw puzzles. This was a regular thing at NewsTrax. Lois and I and many on the staff would spend our lunch time working on a puzzle. I took some of the old puzzles that we had over to Lois’ and they have already done several. Lois does not last long before she is tired but she really seems to enjoy it. We continue to feed the squirrels on Lois’ back porch. Lois says they are more fun to watch than the birds. There are 6 or 7, and they have become quite FAT. She has several bird feeders as well but not many birds seem to eat from them. We have plans to add more feeders in the spring. Due to the increased Baclifin Lois is more tired during the day. The Dr warned us this might be the case and that it would take a while for her to get used to the increased dose.
Good News today and unexpected. Today was Lois’s appointment with her neurologist. We talked in the car about how we hoped he could give us some hope for preventing another stroke, and we hoped that the doctor would not send us for lots of tests. Dr. Kalonaros asked a number of questions at the beginning of the apt. about what the episode was like (the thing we have been calling a T.I.A) Then he said he had good news. Lois DID NOT HAVE a TIA it was only a seizure. That was the good news and it was a very small seizure – compared to the one she had last February. This was unexpected good news. We have learned to live with the fact that we thought Lois had had a small stroke. Dr. K said we must monitor this situation closely and he would make medication changes if needed. He then said to Lois “How is your walking?” In our high level of concern over the appointment and the issue of the mini stroke, we forgot to bring her walker. No problem says Dr. K and he held Lois up and made her walk around the room and down the hall and back. (Now remember this Dr is quite attractive and Lois really likes him) I think she blushed during this part of the appointment. Her walking has greatly improved. She is now able to kick forward with her weak leg and then step forward with the good leg instead of stepping forward with the good leg and dragging the weak leg behind. It gives a good appearance of walking. Dr. K did recommend that she increase her muscle relaxers as her leg and arm are too stiff. This does have the potential of making her sleepier however. We were all smiles in the waiting room and in the car after the appointment. It reminded me of the times Lois and I had gone on a client calls and came home with a big orders for business. We stopped at Premiere Foods on our way home where Lois had great fun picking different fresh prepared foods to take home. She also stocked up on some healthy snacks and different nuts and dried fruits. This was a good day!
Last night Lois and I had dinner with our two friends Pat and Sharon. These two individuals have been very important to our continued success. Pat is an attorney and small business owner and Sharon is a physician. We had created a small group to serve as an advisory group throughout the early months of Lois’s stroke. And thru all this we found that we truly enjoyed having them as friends. I ordered food from one of Lois’s favorite restaurants, La Marina, a wonderful seafood place. We had wine and excellent food and laughed for hours over stories of dysfunctional families and other stories. Pat is a new grandma as of Dec 8 so we had to view the pictures. Lois ate like a field hand but did not have any wine as she felt if would make her sleepy. Lois continues to seem improved after the TIA. We have a doctor appointment on Jan 11 with her neurologist.
Lois continues to improve. This was a very mild stroke and appears to have very little affect. She says that her speech has been affected but most of us do not notice any difference. She says it is harder to find the words. Yesterday was the holiday party for all of Lois’s homecare workers. Being Buffalo we of course had a foot of snow but almost half of her workers ventured out and enjoyed the party with Lois. Lois and I had bought several items for everyone including making a “grab bag” with some left over crazy gifts from the prize closet at NewsTrax. It was fun.
Some bad news to report. It appears that Lois has suffered what is called a TIA (Transient Ischemic Attack) or sometimes called a mini stroke. This happened on Sunday 12/19 but Lois did not tell anyone. She just thought if she went to bed she would feel better. Then she made the aids promise not to tell me as she did not want to go to the hospital. I learned about it finally on Tuesday. By this time Lois is almost back to her current self after suffering from lack of speech, blurred vision and weakness in her right side (which is already affected by the stroke). Her general doctor made a house call (he lives nearby) on Wednesday 12/22 and scolded Lois for not going to the hospital. She has promised to do so in the future. The worst thing about this whole thing is that the doctor has said that a TIA is a preview of a possible full stroke to come. Lois is in good spirits and does not want any of us to worry or fuss over her. We are scheduling a CAT Scan with her neurologist but due to the holiday it may not happen until first week in January. On a somewhat lighter note, Lois did get the results of her arterial and bone density tests. Her arterial test was normal with no blockages or possible blood clots in her body. The blood flow is normal even in her weak side. She does have a little osteoporosis in her right side hip and in her neck a special drug that can correct the problem has been prescribed.
Lois had a great time at the NewsTrax holiday party today. She came to the office for the first time since the stroke. We enjoyed showing her all the things that were new including the fancy new computer system and all the piles of tapes from a big project we are working on. Then we all walked (wheeled) down to the end of our street to a little restaurant and had lunch. Lois sat at the head of the table and enjoyed the potato skin appetizers and ate a good portion of her meatloaf (the restaurant’s specialty) and home made french fries. She even had a cosmo to drink. She was exhausted but happy when I took her home. Several of the staff had not seen Lois since her stroke and we have a few new staff who had never met her. Lois wore a very stylish black hat with the brim turned up and her black leather coat. The weather was chilly but not cold. We hope that Lois will be able to attend future NewsTrax functions or be able to get out to restaurants or to a movie.
Wow, did not mean to go so long without an update. Lois has been doing great. She continues to get improvement in her leg and the arm progress is very amazing. She is now able to raise her arm and is able to hold an adapted spoon or fork and feed herself. This progress came after a whole year or no movement at all. After only a little over a month of home visits by OT and PT they have all but stopped. Health insurance in this country is mostly a joke. We have battled them each and every time Lois has changed locations. We have had to fight for each upgrade and continued service. It is exhausting and frustrating. It is no wonder that most people just give up. Lois continues to be in good spirits and is enjoying being home. I go and have lunch with her almost everyday. Some days we watch the squirrels eat from a feeder outside on her back porch. A most recent discovery was that Lois can read number if they are spelled out. (Eight instead of 8) She cannot read actual numbers but if they are spelled out she has no trouble. Her speech therapist Maggie made this discovery and Lois and I were amazed by it. Lois is still sleeping a great deal but the doctors have told us that it is common in stroke patients. She is always very tired after her therapy sessions like speech. Several friends have stopped over for a visit. It is best to call her first to be sure she is up. Making an appointment is advised. It is good to have her home and so close now. We are very pleased with all the aids that have been hired to assist Lois. She still has 24 hr coverage but we are hoping to cut that back soon. We have had grab bars installed in her bathroom to make it easier. One of Lois’ goals to come back to work. I don’t doubt for a minute that this will happen.
Wow! I can’t believe that is has been this long since I have done an update. Everything is going great. Lois has settled into her home and has been busy rearranging things to meet her current needs. We are very pleased with all the new aids, and we are continuing the 24-hour coverage for a while longer. It is important that Lois feel comfortable and safe before we loosen up on that. I go most days and have lunch with Lois. It reminds us of the other times as we almost always had lunch together every day. Her appetite has been good and she has been eating more at each meal. Weinberg food was good but being home and home cooked food is better. Lois’ stove has never been used so much! Tomorrow is the one-year anniversary of the stroke. I told Lois that we should have a cake and start counting like birthdays all over again. We laughed. Lois has so many people coming and going at the house, it seems like Grand Central sometimes. One day last week when I was there with Lois and one of her aids, the nurse came from the home care company, then her PT showed up early and then the plumber arrived to fix the bathroom sink and then her lawn service arrived to work in the yard. I told Lois, “I have to go. It is too crowded here!”
Lois is doing great at home. She has been anxious to get her house in order and clean out some drawers and closets but the work exhausts her so she is only doing a little each day. We are very pleased with the aids that were hired and so far that is going very well. Judy has done an excellent job of coordinated the individuals and getting all the days and nights covered. This has helped me a great deal. We has set up a small company called “Lois Sugar Enterprises” and this will be the vehicle that we will use to pay the workers. We have also hired a small bookkeeping company to assist with the payroll and tax paperwork. I spent a great part of today trying to get the Social Security office to change Lois’ address and direct deposit her check each month. Sounds like a simple thing right? Wrong! I spent much of the day on hold at one place or another. Our tax dollars at work!
Well, Lois is now home. The move went fairly smoothly. The movers I hired were excellent. They made short work of the job, were clean and courteous. They showed up on time and were completely done in 2 hours. Lois had some tearful goodbyes at Weinberg and then boldly headed home. Judy her aid has been excellent at helping out and coordinating the other aids. Now we have all new things to work on. This week we will start a whole new round of at home therapies. Lois wants to clean out all her closets and draws to get rid of the things she will not need. We have been trying to keep this to a minimum each day, as it is very tiring for her. She really over did it on Saturday and spent most of Sunday sleeping. We are still working out a good way to get her to the bathroom. I am going to check on getting a narrower wheelchair if possible, as it is difficult to get through doorways and into the bathroom. So far so good on the 24 hr coverage for aids.
Just when I thought I had done almost everything in my life, then I go grocery shopping with Lois. Many of you may know that Lois has always had some unusual eating habits. Well, shopping with her is equally unusual. We spent 10 min looking for the “Soy Milk Section.” Also she had me bag up 1 ea of about 10 different fruits, which I thought was unusual. The check out clerk said it was not that unusual however. We laughed and wondered the isles talking about different foods. It was great fun. We even stopped and had sushi at the little café in the store. One thing was not good however. About half we people we encountered at the store were courteous and understanding. However, the other half were noticeably annoyed that we were in their way. I was not prepared for this type of reaction for people. Lois just shrugged when we talked about it later in the car ride back to Weinberg. I hated the fact that she has added another minority and possible discrimination to her life. There were some very caring people at the store. Some even offered to help Lois when she wanted something off a shelf. This was a most unusual, eye opening day. Funny moment at the store: When we came out of the store after shopping they had set up a huge Christmas display in the front area. I said to Lois, “We have been in there so long that it is now Christmas time.” We laughed all the way to the car.
The house is almost ready. I have spent the week nights cleaning and doing some sprucing up. I have repainted her porch and paid special attention to the handrails as they have new importance. I purchased some beautiful fall mums the same color as her front door to put in the front of her house. Her lawn company has spent extra time at the house working on the front lawn and mulching the beds. It looks great. The medical alert device has been installed. The cable has been installed (I had it shut off 8 months ago) and we upped it to digital so she can get hundreds of channels to surf. We also added a second TV in her bedroom. Her bed has been dismantled and stored. She will be using her current bed that we purchased when she started at Weinberg. It is comfortable and has added safety benefits. The mover comes at 8:30 AM tomorrow to move her from Weinberg and then it will be done. And a whole new group of things will start. Stay tuned.
Funny Story: As a hobby business, I make garden things out of copper wire and sell them at local art and craft shows. This past weekend I was at a show that was very near to Lois at Weinberg. I scheduled it so that I could visit her after the show. On Sunday, I am sitting in the booth not being very busy with customers and suddenly from around the corner came Lois Sugar wheeling herself in her wheelchair with a huge smile on her face. The Garden House activities person had brought a bunch of residents to the show as a group activity. Lois had left the group without the knowledge of the coordinator and gone in search of my booth. Lois sat with me for some time and we talked and she helped me with customers. I saw the group of Weinberg across the way and suddenly asked Lois if they know where she was. She said no. So I ran over to tell them that Lois was with me. When I got closed I heard the coordinator in a frantic voice asking the other residents if they had seen Lois. She was relieved that I had her. Lois is becoming very independent again. I am afraid to get her an electric wheelchair for fear that she will be out on the highway with it.
Lois goes home on Saturday. We are almost ready. Some cleaning and a little contract work and the house should be ready. Stay tuned. We are about to enter a whole new era in the recovery.
We had a great weekend. Lois continues to amaze us all with her progress. Each time we talk about going home, she gets a huge smile on her face and just beams. We are working hard to be ready to go home. Many things must be done from readying the house to getting all the required prescriptions from her doctors. We are working to schedule at home aides to assist – 24 hr coverage to start with hope that it will not be needed for long. On Sunday, Lois & I went to our friend Pat’s home for a wonderful dinner in her back yard. We drank wine and ate like Romans and for a few minutes forgot all about this past year. Lois gets very tired from any outing and even though we had to leave early, a good time was had by all.
Lois had a great doctor’s appointment on Friday. Her general doc is very impressed with her progress. She even got her cholesterol down dramatically thanks in part to a new drug she is taking. They are going to watch her blood pressure for a while and there will be more blood test in the future. Lois was able to show off a bit for the doctor by walking across the room “unassisted.” Her doctor sees no reason why she should not be able to go home. We thought maybe we should just check even though we were already pretty sure she could go home.
We are happy to announce that Lois will be going home on Oct 2, 2004. Now our work will begin on getting her house ready and all the therapies set up for home. She has several Dr. appointments in the next few weeks to determine the best plan of action. We will need a mover to help move her stuff from Weinberg to home. We are currently coordinated a pool of at home aides to assist. This includes needing 24 hr coverage in the beginning. MORE EXCITING NEWS: Lois has suddenly started to get some movement back in her right arm. Before this started there had been no movement whatsoever in her fingers, hand or arm. Now she is able to move her arm up. There has not been any movement in the fingers yet. She continues to make progress with her leg. She is now able to bend the leg at the knee and some small movement in the ankle. In a few weeks, it will have been a year since Lois’ stroke. (Oct 21 is a day I shall never forget.)
Here is exciting news: Lois has announced that she is almost ready to go home. We had talked last week about possibly going home in October or November, but now she thinks that she is almost ready. We will have some work to do to get her house ready but it won’t take much. It will be so much easier to visit her as her house is just minutes from the Office and my home. I now spend almost an hour a day on the road to visit her. This will be a big milestone.
Lois announced to be proudly today that she was able to dress herself without any help. This is exciting. I later learned that she did need a little help but it was great to see her enthusiasm and a big step in trying to go home. She is working on several things with her PT. Today Linda, the PT, asked her to lift her weak leg while she was seated in her wheelchair. Lois immediately said she could not do that. But Linda insisted and behold Lois was able to lift her weak leg while seated. Lois was amazed! She had no idea that she could do this. She has also been working on walking down the hall to meals instead of using the wheelchair. Today she made it over half way before needing a rest. There has been a little movement in her arm. She is now able to pull the arm back but no movement in the fingers or wrist. She continues to do exercises each day in hopes of this limb returning.
There has been little to report of late, but I know that some of you worry when nothing is posted. Lois continues to make progress in all areas. She has been playing computer games on a used lap top we bought for her. She especially enjoys a game called Mah Jong. It is a matching game that she loved before the stroke. Her private aide Judy has become addicted to the game. Lois has been able to adapt to using her left hand to do the mouse. Lois has been invited to Dave the personal trainer’s wedding reception on September 18. There has been an ongoing bet that Lois will dance with Dave at his wedding. She is going to try.
Lois went for coffee today with two of her girl friends. I arrived for a visit shortly after they returned. They were all high on fun and caffeine and sweets. They were all talking fast and were laughing. Especially Lois. She was one big smile and for a moment we all forgot about the last 9 months and we all laughed.
Judy, one of Lois’ aides, called me this morning and asked if Lois could go to Target. I said she should ask Lois not me. And so Lois went to Target for a little personal shopping. She had a great time but it was exhausting to her. Ten minutes after she returned to Weinberg, her PT showed up for her session. Lois slept good that night. But it was a real step to returning to world.
“This was a good day,” Lois said to me in the car as we drove back to Weinberg this afternoon. She had been at her house for only the second time since the stoke on October 21, 2003. Her physical therapist Linda met us there and worked with Lois on stairs and maneuvering in the bathroom with her walker as the wheel chair will not fit through the door. Lois was also able to transfer from her chair to her own bed. She had a great big smile and look of contentment as she lay on her own bed for the first time in 9 months. “This is great!” she said, and I thought she might fall asleep but there was much work to do. This was an exploration trip to see what types of things might have to be done to ready her house for her to return. According to her PT, there will not be many things that are needed. Some new hand rails and some grab bars in the bathroom will be about all that is needed. If a ramp is needed, we discussed putting it in the garage and using her back entrance. That way the ramp would not be in view at the front of the house and it is actually less steps than just going in the front door. This was a wonderful step toward Lois going home, and it truly was a good day.
Lois has planned a trip to her house for tomorrow. Her PT is meeting us there and we are going to “walk” through the house and pin point areas that may need to be changed before Lois can go home. She is especially going to work with Lois on going up and down the front steps at Lois’ house. This should be fun.
Lois had a great time at the medical supply store. When we rolled in, she said “This is like a toy store!” and it was. We were able to browse the isles of items one could not even dream of before. The Luck of Lois was in full force also: a woman came over to help us and we soon found out that she was the wife of the owner and that she was good friends with Linda, Lois’ PT. So we received the VIP treatment. We were able to look at a wide variety of eating instruments and new leg braces and various exercise equipment for people who need rehab. They also have a large variety of electric chairs in all sizes and colors. We shopped and shopped and then when back to Weinberg with lots of ideas and photo copies of various things Lois would like to try but we need to speak to her therapist about them first. It was a fun day. Last Friday Lois’ uncle and aunt just showed up for a visit. They came all the way from FL to see Lois. A nice visit was had by all.
Lois continues to make improvements in all areas. She even has started to get a small amount of movement in her fingers on the right arm. Her leg continues to improve and she is able to walk further each day. She may walk down the hall to meals at some point soon. Lois’ speech also continues to improve. She has many exercises that she does. Lois always enjoyed puzzles and just recently she has been able to work on small jigsaw puzzles. She also does word games like Password. Work continues on her numbers. She uses playing cards and must say the numbers and put them in order. This has been most difficult for her. We hope that Lois will be able to go home a some time in the not too distant future. Maybe even before the snow flies. We have identified several home aids who can assist Lois with her daily functions. This week Lois and I are going to a medical supply store to pick out a few things that might be helpful. We have a list of items from various therapists. This field trip will be fun.
There just hasn’t been much going on to report of late. Lois continues to make progress in almost all areas. She has made improvement in walking and getting up and walking to the bathroom. Her mood is excellent and she is quite motivated to work on getting better. She has been able to assist me by listening to my issue and then helping me think about what we should do. This has been most helpful regarding business issues (of which we have had many lately) Lois always did help me with these issues and so it seems right that she continue to do so. I will be out of town for a few days for a conference. If any of you who might view this could go visit, it would be a great time to visit.
Well, I can add this one to my list of “Things I Never Thought I Would Do” list. I took Lois for her mammogram today. To say that a man was out of place at such a thing is a grave understatement. As I sat in the waiting room I realized that I was the only male there and the women sat serious and a little nervous. It was much worse than waiting to see the dentist. There was a little scare with Lois’ test and they wanted to do a second test to rule out a small spot on her mammogram. But all is fine. I don’t think that most men would ever consider such a place as a mammogram facility. This is a special place that women dread to go. And now I have been there.
Yesterday was a HUGE milestone for Lois. She was able to get up and out of bed, WALK unassisted to the bathroom and go (by herself) and return to her wheelchair. Her previous PT person, Linda, was there to assist and spot Lois in case she might fall. This is the best progress in some time. This is a big step toward being able to go home. Lois continues to have good progress in all areas. Her speech therapy continues 3 or 4 times per week. She is working hard on reading and relearning her numbers. I have found that Lois can talk better in the morning than in the late afternoon. For now, I have changed my visits to midday instead of early evening. Lois continues to be motivated and her spirits are good. She sees her progress and loves it. Her thought is to be able to go home by the end of the Summer.
Lois has been doing just great. The new meds are really working and not making her tired all the time. She is walking better each day and may soon be able to get up and go the bathroom by herself. Today when I went to visit, she was out in the hall outside her room walking with her first (at Weinberg) PT Linda. Linda retired from PT several months ago but has decided that she is bored is considering taking Lois on as a private client. This would be excellent. Linda did wonders for Lois when she was her PT. We also have word today the Lois’ friend Don Angelo has agree to help sell her car. (One less thing for David to do!) Work continues on speech and numbers. Tomorrow Lois will go for her annual mammogram, which is just routine. We still hope that Lois will be able to go home in the near future. We have found a wonderful aid, Judy, who would help Lois at home. Howard, Lois’ brother called today. He is researching books that have been written by stoke victims. Lois and I are thinking of writing a book about this whole thing.
When I was leaving Lois today, she grabbed a hold of my arm and with a big smile said very clearly “This was a great day!” And it was. Today Lois went to her house for the first time since the stroke. We have been talking about it for weeks but today was the day. She want to see how her wheelchair went in her house. She could not get the chair into any of her bathrooms. We did pick out some clothes and she was able to find her car title which I have been searching for weeks. We had a little trouble getting in and out of the house—up and down the stairs was a little harder than I thought. Then when we got back to Weinberg, Lois was able to try out an electric wheelchair that the campus has. It was very easy for her to navigate it and now she really wants one. The concern that they have at Weinberg is that she will not work on walking and getting in and out of her chair as much if she has an electric chair. By the time all this had happened today Lois was exhausted. But it was a great day.
Lois continues to work hard at speech therapy. She is no longer receiving in house PT and OT but her personal trainer Dave has been working hard with her on many of the same things. He works with her on walking where she uses her special walker which is like a big cane with four legs special adjusted to Lois’ height. She is able to slowly walk across the room to a chair where she sits down and rests before making the return trip. Someone is always walking beside her to assist if needed but she is able to take the steps slowly and use the walker for support. Lois is also working hard on getting in and out of bed by herself. More work is needed to enable her to go to the bathroom by herself. Lois has decided to continue receiving personal aides during the day at Weinberg. This personal care includes having someone to help her with her arm exercises and working with her on reading. Lois is also working hard on relearning her numbers. She very much wants to play bingo with the other residents but at this point cannot recognize the numbers. She knows them in her mind but cannot connect them with written or printed numbers. She is however able to read many of the cards she receives. It is good practice for her to read them, and sometimes we read them several times. Lois still requires a great deal of sleep.
Lois has had an amazing improvement. Last night when Howard & I went to visit, Lois said to us “Watch This!” While she was lying in bed, she raised her leg into the air. At first we did not realize what was happening. We thought she was raising her good leg into the air BUT it was her weak leg. This was incredible! She had been able to move the leg a small amount maybe raising it a few inches off the bed. But this time she could raise her leg several feet high into the air! All this improvement has occurred since she has been at Weinberg. She had no movement in the leg before she came here. Now she can walk across the room with a walker and the assistance of one person. She can stand by herself as long as she has something to hold onto. She is able to get from her bed to her chair and back by herself or with a very small amount of assistance. Lois has been talking about wanting to go home maybe soon, which is most exciting. We are currently looking into what type of care she would need. Lois’ speech therapist has told us that she is also making great improvements in speech. She is able to talk more in complete sentences and able to create the correct word in more instances than before. Yesterday, Lois received a card from Howard’s friend Nora from FL. Howard asked Lois if she wanted him to read it to her but Lois said “No, I will read it.” And she did! She was able to get most of the words actually read quite fast. Numbers are still a problem. Maureen, the speech therapist, says it will just take more time to relearn.
Lois continues to need large amounts of sleep. Her in house (in her room) therapy has stopped as of 4/28/04. She will now be able to have out patient PT and OT. We will be researching some near by facilities including the one on campus at Weinberg. Lois’ brother Howard is here for a visit.
Lois had a great day today. She was a bit tired when I arrived to take her to Dr. Kalonaros. But by the time we were in the car and on our way, she was alert and chatty. We got into see the Dr with little waiting. Lois credits this Dr. with stopping the Dilanton and making her feel better. So she said that she wanted to give him a big kiss and she did. The appointment went very well and we do not have to go back for 3 months. He did give us a small warning about the Keppra and that if it does not totally control the seizures, she will have to add another drug. But we will wait and see. She may not need another drug. The appointment went so well and was quick that by 11 AM we were back in the car. Lois was feeling so good I said where can we go. It was such a bright, sunny, warm day that we had the windows down in the car. So I said how about going for a Dairy Queen. Her eyes light up and she said “Yeaaaaa!” So we did. She ate almost all of a Peanut Buster Parfait (one of her favorites). I had to help her a bit but she did very good and loved it. I told her it was going to spoil her lunch and she said very clearly “Who cares!” This was a great day and felt so good to have Lois back. The Dilanton fog has all but lifted. Next week we will be touring several PT & OT sites to consider for out patient therapy. We are hoping that the on campus site at Weinberg will be acceptable. Lois’ brother Howard (whose birthday is today) will be visiting starting on May 3 for two weeks.
One has not lived until you have sat in the Social Security office for almost 3 hours filling out forms. Our tax dollars at work. We have started the process for Lois to receive SS disability. It won’t nearly be enough to cover the costs of her care but it will help. One thing important that I learned is that one should not just listen to others and think that they know the facts. I was told by someone that you had to wait 6 months before you can apply for SS disability. Wrong! You can and should apply early if it is certain that the individual will be disabled for a long period of time. Then it takes several months for the process to actually start. To save some time they do send you many forms to complete before you go for the meeting. Everyone should have a few important documents stored in a safe place. This should include an original copy of your birth certificate, your health care proxy (everyone should have one of these), and your social security number. This is also a good place to have your will and important one of a kind documents like mortgage papers and titles to automobiles. Lois continues to improve as the dilanton leaves her system. We will be battling the health insurance company soon as the OT and PT therapists have stated that they will be stopping her in-house therapy soon. She may be able to go to out patient therapy.
Lois continues to make improvements now that she is off the Dilanton. On Thursday she had a doctor’s appointment with her new primary physician, Dr. Jeffrey Bunette. It went very well. He spent almost an hour with us asking lots of questions and giving advice on many things. Lois has decided to try the aquatherapy that they offer at Weinberg. I am pleased that Lois is feeling better. We laughed about a number of things during the Dr. trip and it was good to have Lois back and feeling better.
Lois has had a good couple of days. She is now totally off the Dilanton and is feeling a little bit better each day. The new drug, Keppra, makes her a little tired but nothing compared to the Dilanton. Lois is feeling so much better that she has been thinking about going to her house to pick out a few things for herself. Until now she has tried to explain to me what she wants and I try to find it—sort of like a scavenger hunt I guess. She has been thinking about getting rid of some of the clothes that she will not be needing. I just think that it is great that she is making these kind of plans. For the last few weeks she has done nothing but sleep. Lois’ accountant, Ray, visited this week. He had Lois’ taxes done and wanted to visit her. He called me saying he had witness a miracle as he has not seen Lois in several months. She has made great progress in that time. Lois’ personal trainer, Dave, continues to visit Lois up to four times a week. He puts her through a series of exercises and helps her practice sitting on the side of the bed and standing.
Lois is continuing to reduce her Dilanton level which seems to be allowing her to be more active. She continues to take the Keppra and has had no side effects from it. On Lois’ request we have hired a private aide to be with Lois exclusively during the day. Lynn has worked with Lois for several months at Weinberg and has developed a good relationship with Lois. She will be with Lois for 8 hrs a day for a few weeks or until Lois feels that she does not need the assistance. Lynn will help her with personal grooming, meals and any other daily activity where Lois might need a little assistance. Lynn will keep me posted on how Lois is doing and any needs that Lois might have including keeping track of Lois’ hectic schedule for therapies and doctor appointments. Lois is going to get some new curtains in her room tomorrow. She wanted beige colored curtains to match the walls and carpet. We bought her a bright red valance—let’s hope she likes it.
Lois has continued to be very tired. She has started a new medication called Keppra which will replace the Dilanton. They must however reduce the Dilanton slowly. The doctors hopes that the Keppra will not have the drowsiness that has occurred. We were able to catch up on our programs yesterday—we were one Sopranos behind. Hopefully, tomorrow we can do our regular Sunday routine of The Shield and Sopranos.
Yesterday, April 1 they called me from Weinberg and said that Lois was very weak and could not seem to wake up. They felt that she should go to the hospital, so off she went by ambulance. I met her at Kenmore Mercy ER. We had decided to go to a different ER this time due to the crowded conditions at Millard Fillmore Suburban last time. Lois was the only patient in the ER for awhile. They ran a large amount of tests. Everything came back good except her Dilanton level which was twice as high as needed. This was the problem. She had a toxic amount of Dilanton in her system. It was good to know that it wasn’t something else. They reached her doctor who said to stop the Dilanton for awhile and let the level reduce. Lois had hoped for a quicker fix. I took her back to Weinberg about 9 PM. She already seemed to feel better.
On Sunday Lois was very excited to tell me that she has had a small amount of movement in her weak arm. This is very exciting. Dr. Kalonaros was so certain that she would regain some use of her arm. Lois has continued to sleep a great deal. Also she has had an adverse reaction to the Lamictal and she have discontinued taking it at the time. We had so hoped that this new drug would help with her constant tiredness. They are considering other meds at this time. I have been under the weather and have not visited for two days as I don’t want her to catch this.
Yesterday was a great milestone for Lois. She was able to get up in bed and move to her wheelchair BY HERSELF. This has been something we have been working toward for many months. And is the first big step to being able to go home. Lois was most excited to tell me this when I visited yesterday. Her OT Diane has been working on this as has her new PT Jill. Now they will concentrate on Lois being able to get out of bed and go to the bathroom by herself. We are interested to see if the health insurance company finds this progress ENOUGH to continue her therapies. Both the OT and PT therapists must send a report every two weeks asking for more coverage for Lois. Each time they say it becomes more and more difficult. We are working on getting the forms completed for social security disability and Lois’ disability insurance—paper work, paper work. The worst thing will be that a form must be complete each month by Lois’ doctor stating that she is still disabled. (I have found that the doctors hate this and often loose the forms.)
We have been concerned this week about Lois being so tired all the time. She has great difficulty in waking up for therapy or visits. Most of this is blamed on the medications she is taking. I have discussed the issue with her new neurologist and he has recommended switching her from the Dilanton to Lamictal. We were all set to do this but Lois has requested that we not change it at this time. She has always been reluctant for serious change in her life and that has not changed since the stroke. She and I have talked about the drug switch and will continue to monitor her tiredness for the next few days. Lois and I were able to get caught up on our favorite programs over the weekend. She loves the show The Shield of FX and the new season of Sopranos has been excellent. Howard, Lois’ brother, is leaving today after an extended visit.
Lois and I had a great Sunday! We have always shared our favorite shows—talking about them the day after or even calling each other during a particularly exciting part. Two of our favorite programs are The Sopranos and The Shield. This past week marked the season opener for both of these shows. On Sunday afternoon Lois and I watched both episodes. We have been talking about doing this for weeks. It was great fun. This week Lois gets a new physical therapist and the battle continues to see how long the health insurance company will pay for home visits.
The doctor’s appointment went VERY WELL. Dr. Kalonaros is a specialist in neurology & electromyography. They asked tons of questions and preformed a number of tests on Lois. The most exciting of these was testing her reflexes. Her right leg responded well to the taping on the knee. She was also able to feel a light pin prick on her right leg and also on her arm. He used a tuning fork device to test her ability to feel vibrations. Lois was able to feel the vibrations even in her weak arm. This was excellent. Lois was smiling from ear to ear. Especially after the Dr. said that it was a good sign that she will most likely regain feeling and use in her arm. This is the first time ANY doctor has given us ANY hope in this regard. Every doctor has stated the opposite. But he did stress that much work is needed. He is also going to review Lois’ last CT to look at the size of the blood clot. He stated that from the written report from the hospitalization at the time of the seizure a month ago that the blood clot had been totally dissolved. The Dr. also evaluated all the medications Lois is taking and made some immediate changes that may help her not be so tired all the time.
The bad news for the day was that Lois’ physical therapist Linda has decided to retire from the industry. Thursday, March 11 was her last visit for Lois. We might have liked more time to get use to the fact but Linda felt it was better to do it this way. Lois has two or three weeks of in home PT and her new therapist will be Jill. At that time Lois may have to go to an out patient facility to receive PT. Linda recommends that we do this as it will be good for Lois to build her stamina and to get out of Weinberg on a regular basis.
3/11/204
Lois’ Birthday was a great success. It wore her out however, and several times during the afternoon she needed a little break to lie down. Thanks to everyone who visited, sent cards or flowers. Those who attended enjoyed a wonderful birthday cake from Schroeders Bakery in Buffalo. Pat Potts sent three huge balloon arrangements which we used in different areas of the reception area. Many from the NewsTrax office visited and for some it was the first time to see Lois since the stroke. She was very happy to see her coworkers. Today (Thursday) we have her first appointment with the new neurologist, Dr. Kalonaros. We have developed a list of questions and hope to start a new source of medical information. It will also be the first time for Lois to go in a car since the stroke. All other transportations have been by wheelchair van. We have been practicing with Linda the PT and we feel we are ready. Howard will be going to the Dr. with us.
Lois’ brother Howard is here for a visit. He was able to see the progress that has been made with walking and the movement in you right leg. Lois has been working with her personal trainer Dave who has worked her for some time—long before her stroke. He puts her through a series of exercises and Lois credits this work for her recent progress.
Reminder: Lois’ birthday is Wednesday, March 10. If you can, please send a card. Humorous cards are always good. Also if you are in the area and can stop by the Weinberg Campus on Wed from 3-6 PM, please join us in a piece of cake and short visit with Lois.
I am excited to report that Lois is making excellent progress with physical therapy. Yesterday when I visited, Linda the PT was there for her session. She is working on Lois getting out of bed and into her wheelchair and then from the wheelchair into bed. Lois is able to do this with only a minor amount of assistance. But the most exciting progress was made in the walking. At Brothers Lois walked with a special walker called a “hemmy walker” which is used like a cane with four legs. While she was at Brothers Lois could only walk with a PT holding her up and that person sliding her weak leg forward with each step. Lois is now able to pull her weak leg forward and take a step and do this without much help from the therapist. I saw Lois walk across her room to a chair and then sit down almost exclusively by herself. This is amazing progress. The therapist says that sometimes this sort of progress occurs in stroke patients. Brothers was sure that Lois had plateaued and reached her potential. This was obviously incorrect. Lois has been adamant about doing her exercises. She has learned how to manipulate her weak leg by using her hip. We have also been working on the car transfers which gets better each time we do it. Lois has a Drs apt on Mar 11 and we plan to drive there in my car instead of taking the wheelchair van. Not only will this be a money savings but will save time and aggravation.
ABOUT LOIS’ BIRTHDAY: On Wednesday, March 10 we will be holding an informal “stop by and visit and have some cake” birthday party at the Weinberg Campus from 3 – 6 PM. The Garden House building is the last entrance to the Weinberg Campus on N. Forest Rd. (1710 N. Forest Rd) Lois is in room 145. Short visits are requested and also NO gifts (cards only). Lois is not good with a crowd of people in her room so we ask that you visit with only one or two people at a time.
Lois was able to do her first car transfer today with the assistance of PT Linda. Lois was very excited about this and could not wait to tell me. This is such a big step as it means no more crazy rides in the wheelchair vans. I will be able to take her to the doctor or to a movie or out to dinner. She will be working on this more this week. The health insurance company is already making some noise about her continued physical therapy. We should know more later in the week. Lois and I have talked about the need to continue therapy even if her insurance will not pay for it. How they can feel that therapy is not worthwhile is way beyond me.
Not much to report so I haven’t updated for awhile. Lois has made continual improvement after her seizure. They have rechecked her Dilanton level and it was high so they are reducing the dose. This should help her not be so tired all the time. She is really getting good being able to sit up on the side of the bed. Yesterday she was able to stand by only holding my hand and moved herself around and sat down in her wheelchair. I really did nothing to help her except give her something to hold. It is amazing the progress Lois has made in transfers. Next week we are going to start working on transfers to the car. This will let us be more mobile and allow me to take her to the doctor or to a movie. Lois’ Birthday is March 10th. We are considering asking for cards to be sent from as many people as possible.
Lois is continuing to improve after the seizure. She has almost resumed her hectic schedule with therapists. She has PT 3 days per week, OT 2 days per week and Speech 3-5 times per week. Lois has made great improvement with getting out of bed by herself. Last night when I went visit, she said to me “watch this.” At this point she was able to get herself moved and able to sit up on the side of the bed. From there all I had to do was hold her left hand and she was able to pivot into her wheelchair. Not too long ago we had to practically pick her up and put her in the chair. This is great progress. Speech is reporting that Lois continues to make progress. She has a number of worksheets, which we call homework, that we go through in the evening. These are many different kinds of word association items. The shower bench has finally arrived after being incorrectly ordered twice. This will make it easier for Lois to take a shower—eventually by herself.
There has not been much to report of late. Lois has been resting comfortably at Weinberg. The seizure did take quite a bit out of her and she feels tired part of the day. She has resumed her therapies but to a lesser degree of activity. Speech therapy has been making progress. She has two therapist: Maureen who was her therapist at Buffalo General and Kathleen who is a friend of Lois’ friend Ellen (small world). Lois has enjoyed a wonderful whirlpool bath that the facility has. I have enjoyed visiting Lois at Weinberg and having dinner with her in the “Cafe” which is the area where they all have their meals. The food is quite good! The staff continues to be excellent and have made Lois comfortable. I will try not to go so long between updates. It has been hectic at work and I have a cold so everything has slowed.
UPDATE: Lois is back at Weinberg and doing fine. All tests showed that there was no damage from the seizure, and she is okay. They have decided to up one of her meds which helps control seizures. She made new friends with the nurses at the hospital and everyone from Weinberg was happy to see her back. She will take today off from therapy but resume all therapies tomorrow (This was HER choice). It was a scare but over and all is well.
NEWS: Lois had a seizure on Tuesday morning and was taken by ambulance to Millard Fillmore Suburban Hospital. She is fine now but it was a real scare for us. They decided to keep her overnight for observation. We spent over 8 hrs in the ER which was a real bummer. Luckily Lois was on a valium and slept through most of it. We will know later today when she will be discharged and return to Weinberg. They don’t seem to know what caused the seizure. The stroke is the underlying cause of the seizure but she is on a medication to control this sort of thing. They are running lots of tests and hope to determine the cause so that it can be corrected.
I have just come from visiting Lois and it is the happiest day in months. She loves the new place. They are treating her wonderfully. She is able to wheel herself around her room and put things where she wants them. She was able to “sleep in” today until 10:30 and since she has had a small head cold she said it felt great. This has been the best sleep in months. No more waking her up in the middle of the night just to see how she was sleeping or to give a pill. The food has been excellent and her appetite has greatly improved. The cook actually comes around and gives her a choice of food. Today with a big smile Lois said very clearly to me “I can even talk better here!” It is incredible the difference in the facilities and care. Lois said today that the aides come almost immediately when she presses her call button. At Brothers we once waited 45 minutes. We are still trying to fix all the mistakes that Brothers made in the ordering of equipment. Tomorrow Lois starts with PT. Speech and OT will begin shortly. Lois will be very busy with her therapies and the activities with the other tenants on her wing. She said to me today “I will get better here!” Today was a GREAT DAY!
We are moved in! And it went very well. We worked two days getting packed up at Brothers and getting the furniture from her house. I bought her some great new sheets - red 400 count cotton - they are almost like silk. We are very glad to be gone from Brothers. Both Lois and I agree that it was not the place to be. Their therapy may have been adequate but their custodial care was far from good. I could start a list of problems here but I am in a pretty good mode because of how well the move went so I guess I won’t do it now. I do plan to write a letter to Brothers outlining our problems with their service. But for now Lois is settled into her room. She has her TV from home, some chairs and a dresser. We bought a hospital bed and the facility provided some things like nightstands and small table. Lois met the CNA (certified nurses aid) Darleen and the nurse Karen. They both seem great. There are only 9 people on the wing where Lois is. We unpacked her boxes of stuff some of which we have brought with us since the first hospital over three months ago. They have pledged to give Lois the best possible care and to let them know if there are any problems and they will fix them. We believe them and are hoping for the best. At noon Lois went down the hall to the small lunch room area. She really liked the meal and ate most of it. It was so good that Lois expressed it to the cook. I have not seen her eat like that since the stroke. Lois went back to her room for a nap—it was a stressful day. Tomorrow she will start her therapies. It feels very good to have her settled and comfortable.
Well, it has been a hectic couple of days, but I finally have good news to report. Lois has been accepted (for real this time) by the Weinberg Campus Garden House One facility. This is not the Total Aging Program that we wanted but it is similar. It is on the same campus as the other facility and our plan will be to stay here until she improves enough to go to the Total Program. At this moment Lois will move on Monday, Feb 2 to her new place. It is very nice with a large room that is like a studio apartment with a big bathroom, small kitchen area and all the assistance she will need. This has been a rough go, and I am hopeful that all will fall in place. We will need to move some furniture from her house and plan to do that this weekend. After the trouble getting into the Total facility Lois and I were worried about this place but all is assured by the manager to be approved. Except of course for the many forms that need to be filled out. I will post her new address as soon as she moves. If you are considering a visit please do so this week or weekend at Brothers of Mercy. She is off of regular therapy but would love a few visitors to help pass the time.
I was able to see the improvement Lois has made with walking today. With the assistance of one therapist, Lois is able to walk with a special walker for 40-50 feet. The therapist must help with her weak leg but Lois is doing most of the work with her left arm and left leg. This is such an improvement from a few weeks ago. (Still not enough improvement to keep the health insurance in place however! But don’t start me on that topic.)
We will put this one under the “Who Would Have Thought” column. Yesterday when we went to Weinberg, Lois was declined enrollment because she could not use the bathroom without the help of two aides. Then we found out that she was not receiving any of that sort of therapy at Brothers. To say I was mad would be such an understatement.
They have not been working with her to go to the bathroom. They have just been changing diapers. Even though it says on her chart that she is to be put on the toilet. Everyone expect the administrator has apologized to me, and I want him to also. They started immediately with the training. She will be put on the toilet every 4 waking hours over the next 4 days. On Tuesday, we will go back to Weinberg and try to show them that she can use the bathroom with only the help of one person. Lois is very upset and depressed. She hates it at the Brothers and wants to move. We thought it was a done deal, and we were just picking out an apartment. Then during the eval they discovered that she could not go to the bathroom without the help of two aides which is not acceptable at Weinberg. It is a safety issue they say (sounds like an economic issue to me!) I know that my blood pressure was as high as it has been in recent months. My face got really red as I continued to ream them a new one at Brothers. This was just totally unacceptable. (which adds to our list of unacceptable stuff at the Brothers of Mercy).
So we now have another chance to get into Weinberg - Tuesday. Lois and I have talked about it and she promises to work very hard at this. I have called twice today (Saturday) to be sure that this is happening and so far they say it is. When I visit later and find that it isn’t - you may hear me yelling in Las Vegas.
I blame myself for not noticing that this was happening. I just assumed, and since I am never in the room when Lois was changed or used the bathroom, I just didn’t know. This just continues to add to our frustration with “The System.”
I apologize if this is more information than most of you need to know. It is just the facts and I felt it was important to say, so that you too could understand our frustration. Lois and I are confident that we will get into Weinberg.
There has not been a great deal to report this week. Lois has received a new brace for her right forearm and hand. This was especially made for her for the best possible fit. She also now has a brace for her right foot. This will keep her foot straight and make it easier when she has PT to walk. She is able to go almost twice the distance with the help of a walker and being held by the therapist. She cannot walk on her own, but progress continues to happen. Today she will tour her soon to be new home, Weinberg Campus Total Aging in Place Program. She will pick out her apartment from two floor plans and tour the therapy areas. We will also start to order all the needed furniture and equipment. The current plan is for Lois to move in on Monday, February 2, 2004.
Thanks to everyone who visited Lois while I was out of town. She has told me of your visits and we greatly appreciate your commitments. Lois will be touring the Weinberg facility on Friday, when she will pick her apartment. She is excited about the new place but not about the actually moving.
Today is a somewhat good example of persistence paying off or the squeaky wheel gets the grease. (or the loud, obnoxious, yelling man gets most of what he wants) Lois was scheduled to end her therapy at Brothers on Friday Jan 16 but she is not moving to Weinberg until Feb 1. What was to happen to Lois regarding therapy during the two weeks before she goes to Weinberg? I called and called pleading my case with PT, OT, Case Management, Community Blue (her health insurance). I even called the administrator of Brothers of Mercy. It just wasn’t fair! Stopping the therapy would stop the progress. Well, it all paid off. Brothers has agreed to continue her therapy at least until Jan 23 and will design a special program for her for the next week. Lois will now have continued therapy right up until the time she is discharged. Why did this happen? Anyone could see that stopping therapy would be bad for Lois. This has to be one of the most frustrating issues so far. We are now working on getting equipment for Lois’ new apartment. A hospital bed, wheelchair and some other items will be needed. I have found that her insurance will pay for half of these items. (Better than nothing I guess!) Note: there will not be any updates until Jan 19.
GREAT NEWS: Lois has been accepted at the Weinberg Campus Total Aging in Place Program. This was our number one choice and will be excellent for Lois. This program is new and unique. There are only 25 programs like it in the US and this is the only program on the East Coast that has housing. Lois will be in a brand new apartment which is much like a large dorm room. There is a large room with big windows. A large bathroom with walk or wheelchair in shower and other handicapped accessible features. Even the bathroom floor is state of the art. There is a small kitchen with fridge and microwave. She will receive all the previous therapies of PT, OT and Speech plus other activities including Horticultural Therapy. She will have 24 hr custodial care and access to any needed medical treatment. We are currently looking into purchasing a hospital like bed and an electric wheelchair/scooter. We will be able to bring some furniture from her house to furnish the room. This place is very much NOT like a nursing home. The floors are carpeted and the ceilings are high. There are lots of windows and bright colors on many walls. A local photographer has donated his collection and the framed photos are hung tastefully on the walls. The therapy rooms are new and also bright and airy. Her brother, Howard, and I toured the facility last week, and we were impressed. The whole concept of this place is very different from the places we have been. This place will not be kicking us out when our allotted number of days from health insurance runs out. They say that they are committed to the individual tenant (they don’t call them patients—they are “tenants”). Lois will tour the facility herself on Jan 23 to pick out her room. There are two floor plans to choose from and we wanted Lois to be able to make that decision. We hope to move by Feb 1.
Thanks to everyone who has agreed to visit Lois Jan 14-18. Your commitment is greatly appreciated. Lois has asked me to let anyone coming to visit know that she does not want any food items. She has a sensitive stomach and will not be able to eat anything. She appreciates the gestures but asks to just see you for a visit and that gifts of any sort are not necessary. If you would like to visit and have not contacted me please contact me soon.
A great deal of behind the scenes stuff is being done. We are continuing to push at Brothers for additional therapy but it appears that Lois will stop the intensive therapy around Jan 16. Her degree of improvement does not meet the requirements of the health insurance. (We think any improvement should warrant continued therapy—but that is not the case) She has made great progress at Brothers and most things have been acceptable. We are currently researching skilled nursing facilities in the area and will be touring several in the next few days. If you know of a good facility or a bad facility for that matter please email me a quick note: dcyr@newstrax.com We are looking into a new program at the Weinberg Campus called Total Aging in Place. We don’t like the name but the program and facility are new. It seems like a good fit for Lois but we have not toured yet. Also: if you are local and could go visit Lois at Brothers of Mercy any time during Jan 14 – 18, please let me know. I am unable to visit during that time and I don’t want her to not have any visitors. A short visit between 4 – 7 PM weekdays or almost any time on the weekend would be best. Email me if you can visit with a date and time and I will coordinate a schedule.
I was able to sit in on Lois’ speech therapy yesterday late in the day and she did much better during this session. I asked the therapist why one day could be so much better than another and she said there is no real understanding about why. Some days Lois is just able to speak better than others. She still is having trouble saying words, but she was able to correctly identify over half of the flash cards without assistance. I also learned from the speech therapist that Weinberg Campus has an excellent speech therapy department and that if it is prescribed by Lois’ doctor it would most likely be covered by her insurance. (We are considering Weinberg’s long term living program as our next step.) This news was encouraging. Lois seemed in good spirits yesterday. We watched part of a Jackie Chan movie until she became tired and decided to take a nap.
I have thought very hard about how to word today’s entry. Lois and I had a meeting yesterday with the team of professionals who provide her care at Brothers of Mercy. They first went through the many medications that Lois is currently getting. There was discussion as to whether or not she should stay on the Resteral (a sleep aid) as she is also taking an anti-depressant which also makes her sleepy. It was then time to hear from the PT and OT departments. I have attended several of each of these therapies and was always told that Lois was making great progress. I now understand the power that the health insurance companies have. It is the recommendation of the “team” that Lois be discharged from Brothers rehab by Jan 16, 2004. They feel that she may have reached the plateau in her therapies by this date. The insurance companies puts huge pressure on the rehab facilities to prove that the patient is making CONTINUED progress. They feel that from their experience that Lois may be nearing the plateau of progress. They said they felt badly about this evaluation but were responsible to the insurance company to prove continue progress. At this moment they reported that Lois is able to do or assist with her life about 50% of the needed functions. It is their goal that by Jan 16 she will be able to only need assistance for 25% of the common needed functions of life. Lois has made great progress in some areas. She was able to take a few steps with a walker on Tuesday (12/30) and it was mostly unassisted. While she is not getting much feeling back in her arm or leg she is developing skills to compensate and walk. This is very exciting. But not exciting enough for the team to say she will continue to make this progress and we should keep her in therapy past Jan 16. We also learned that speech therapy is not making much improvement. Lois is able to repeat words, but in 75% of the time she is unable to say the word without hearing it first. In a group of 20 flash cards with pictures of household items, Lois was able to say 3 of the words without help from the therapist who would say the word first and Lois would repeat it. Lois also has a condition where she will get a word stuck in her mind and cannot say any other word but that word for a while. From the OT dept we learned that she is in phase 2 of 7 phases after a stroke. Phase 1 is where there is no movement of ability in the limb—like a wet noodle. Phase 2 is where the limb starts to get ridged. We are working on range of movement exercises, and I have been shown some exercises that we can do in her room in off therapy hours. There is concern at this point about her fingers being in a bent almost locked position. She does her own exercises to stretch the fingers. The bottom line of this meeting was not what we had hoped. At her current status, Lois could probably not go to an assisted living facility. She is just not able to assist enough. She cannot get in and out of bed or in and out of a wheelchair. She cannot change her own diaper and cannot use the bathroom without the assistance of two people. We asked for another meeting on Jan 13 to reevaluate the status of Lois’ recovery. She could remain at Brothers and be transferred to a “skilled nursing facility” floor. Or she can be transferred to another skilled nursing facility in the area. I am currently doing research to determine what if any her health insurance will cover. It is likely that it will cover NOTHING. She does have some “at home” coverage available and I am researching what that really means. Lois would need 24 hour at home care and it is most unlikely that insurance would cover any of it.
I spent the day with Lois today and attended her therapies. She is making some amazing progress. In PT today I watched as Lois with the slight assistance of the therapist walked holding the metal bar for over 20 ft. She did this three times. The metal bar is a hand rail that is in a large, thin oval shape. For several days Lois has been trying to tell me something where she drawls a long thin oval with her finger. Finally she said “You should come to my life” which meant I should come to therapy. She has made amazing progress in the two weeks she has been at Brothers of Mercy. We then enjoyed lunch (or dinner as they call it as the big meal of the day is served at noon). I also attended her OT session in the afternoon where she did things like towel stretches. This means that the person sits at a large table and they put a towel down on the table. The patient then puts both hands on the towel and moves it up and down, left and right and in a circle. Lois kept rolling her eyes at me as if to say this is really stupid. She also did very well with the beach ball toss where the therapist gently tosses a big beach ball into the air and the patients are instructed to hit it with their hands or feet. She did not have speech therapy today due to the holiday. We have been doing many speech sessions in her room whenever I visit. The therapists have given us worksheets with instructions on how to do face exercises and some simple word association. We have a meeting on Tuesday, Dec 30 with all the team of therapists, doctors, nurses and discharge planning. They are already talking about discharge. The insurance company puts a great deal of pressure on the facility to move the patient out. I will fight this as much as I can for her to stay. We know that Lois has 50 days of sub acute therapy coverage starting on Jan 1, 2004 but only if she is still making progress. At this point if Lois is discharged she would go to an assisted living facility as she is not ready to go home. We will know a great deal more about her progress after this meeting.
I was able to sit in on Lois’ speech therapy today (yes, on Sunday!) and it was excellent. Lois can now count to 20 on her own. She also can say the days of the week and the months of the year without assistance. According to her speech therapist, Hope, she has made great improvements in the one week she has been at Brothers. She does excellent at the opposites. For example if the therapist says “up” Lois quick says “down.” She is still reading the children’s books but has asked to have some of her books. She may not be able to read them out loud but she may be able to comprehend the books. This is a big step as Lois has not shown any interest in reading. Lois has asked to remain on the pureed food and the speech people have agreed although they are concerned that she needs to be able to eat solid food. I think it is just better to eat. She was not eating before and now is really eating her meals so what difference does it make if it is chopped up fine or not. Lois has been enjoying the VCR/DVD player that we bought her. Today we watched the “Pirates of the Caribbean.” Lois was able to stay with the movie to the end. We laughed and commented on the movie. This also is a big step for Lois as she was not interested in movies or even TV much a few weeks ago. Lois’ friend Al Anscomb stopped by to see her today. His wife is also at Brother of Mercy.
Lois’ leg is doing better. I was not able to visit her yesterday but I spoke with Lois on the phone and she was having a good day. We do not have the phone hooked up in her room. She does not want to talk to people on the phone so please do not call. She was able to wheel herself out to the lounge area and then down the hall to the nurses station where I was able to talk with her and tell her that I was not coming to visit that day. She is getting good at operating her wheelchair with one arm. She is scheduled to have speech therapy 4 times each week. We have also been given some practice speech sheets for evening work. We also practice reading some children’s books. I hope to visit her while she is in therapy today.
Lois had a little mishap in PT yesterday and has injured her weak leg. Not serious and may only need a little time to heal. This has been a fear of all the PTs. They have been concerned that she will do too much and not know it since she can’t feel a problem. We bought her a wireless headset for listening to TV but after one day she has determined that she does not like it. Her room is directly off one of the lounge areas for the facility and can be a bit loud sometimes. I think she is getting use to the activity and did not like the headphones on her head. Lois has made a new friend “Sandy” who is a worker at Brothers. Sandy is the one who helped her get the hair cut and has cut her nails. Lois says that she is getting some movement in her leg and shoulder which is exciting news. The doctor and PT have told me that it could be involuntary movement but will be working with Lois on this progress just the same.
Lois continues to learn more about her new short term home. She has met her new OT and PT therapists and will have speech for the first time today. Yesterday when I arrived for a visit, Lois had had a hair cut. She scheduled and got her own hair cut without my help. This was amazing! She had it cut short to aid in the care. I was able to have dinner with her. This is available to visitors who want to visit at meal times. The fee is only $3 for lunch or $2 for dinner and the food was good. Lois remains on the pureed diet by her choice and as long as she is eating we don’t care how the food is prepared. I asked her if she had met her new nurses and she said she had and that her favorite nurse was “Mary.” She then followed that immediately with “Tyler Moore.” She then got a funny look on her face as if she knew that she had said the wrong thing and then we both laughed She cannot control her words sometimes and words or phrases just come out. She and I have decided that we have to laugh at it when this happens.
Lois has now settled into her new rehab facility. The move was very tiring for her. For those of you who know Lois well, you know that she is prompt and expects everyone else to be also. We were scheduled to move at 1 PM. By 2:30 Lois was very upset because we have not moved. Finally at 3 PM she was taken by wheelchair van the almost 20 miles out to Brothers of Mercy. She has a private room on the 4th floor. The room is small but functional the walls are light pink with wall paper border in a mauve pattern. There is a bookcase and dresser and a wardrobe for clothes. She has a private bathroom without a shower. The showers are down the hall. This facility is highly recommended for it concentration on the therapies of PT, OT and Speech (All of which Lois needs) She will receive PT up to 7 days a week—we currently do not know how much speech she will receive but we hope at least 5 times a week. For several weeks we have been concerned about Lois not eating. She does not want food brought in and did not seem to want the hospital food. By accident they brought her a pureed meal for her first meal on Friday night. They tried to take it away but Lois insisted on trying it. She liked it and ate almost all of it. On her request she is now having pureed meals even though her swallowing has returned to normal. Anything to get her to eat. Lois went through many tests and was asked many questions during the check in phase. She has a number of male nurses and nurses aids which is different from Buffalo General. They have a more team approach at Brothers. Everyone chips in to help with meal time which gets it done quickly and efficiently. At the General one person did all the meal distribution and it took time to make the entire round of the floor. Lois had a number of visitors at her new place over the weekend. We are working on getting her a wireless headphone for the TV and are considering a VCR/DVD so that she can watch movies or her favorite shows. The TV system is a satellite and does not have as many channels as the cable system. I will be attending her therapy sessions this week to get a better idea of how this new place stacks up.
A great deal has been happening behind the scenes for Lois. We learned on Monday that she needed to be moved to a sub acute facility by Friday (12/12/2003) which did not give us much time to research possible facilities. We asked a number of friends and professionals their opinion of rehab facilities. Several names kept coming up (Weinberg Campus, Brothers of Mercy, Sisters Hospital, Gardengate to name a few) So on Wed 12/10 I went to tour a number of these facilities. The Weinberg Campus was very nice and a newer facility. But Brothers of Mercy was just an excellent place. Almost everyone we asked had good things to say about Brothers. Many felt it is the BEST place in WNY for rehab. After talking it over with Lois and reviewing all our findings, she determined that Brothers of Mercy was her best choice. She will move there on Friday 12/12 in the afternoon. I will post her new address when we are certain of her room number. Thanks to everyone who had input on this decision. We greatly appreciate your time and opinions on the topic.
There just hasn’t been much to report so I haven’t made entries for awhile. Today the news is not good. I have just learned that Lois must be moved from the current rehab by the end of the week as her health insurance only covers 45 days of acute rehab. We were hoping for at least 60 days with the possibility of another 60 days if she was still making progress. So she will be moved to a sub acute rehab facility this week. At this point we do not know which local facility. I will be studying the possibilities and discussing it with Lois. If you have not visited Lois at Buffalo General, now might be a good time to make a short visit. There is also concern that Lois is not making continued progress regarding PT and OT. Speech continues to improve however.
When I arrived at Lois’ room at 4:30 PM for a visit, I found her in her wheelchair out in the hall. I asked her if she was trying to escape and she said yes and we laughed. She has been learning how to operated the chair with only one hand. We then took a short roll around the floor. Lois was in a great mood and sat up in the wheelchair through dinner. Later her friend Pat came to visit.
Lois had lots of visitors over the holiday. Her friend Arlene brought her some new clothes in bright colors. Her closet at the hospital is so full the door won’t shut. Sharon is learning about something called “Brain Gym” which may be helpful. It is a new form of therapy especially designed for stroke patients. Her brother Howard will be leaving today or tomorrow. Sharon is going to take Lois’ cat for awhile. Howard and I have been working to get Lois’ bills paid. We should know soon if Lois will be transferred to a sub acute facility. We are hoping that she will remain at Buffalo General as she has made such good progress there.
Lois has taken more trips around her hospital floor in her wheelchair. She is even learning how to move the chair herself with her left hand. Her stomach ailment appears to be better although she is not always interested in the hospital food. Lois requests that individuals not bring her food at this time. Lois has had a number of visitors over the holiday including her friend Arlene who is in town from Detroit. Lois has received so many cards that we have filled the card holder on the wall TWICE. She is now able to open the cards herself and enjoys the pictures on the outside. I read the cards to her each day, and we talk about the individual who has sent the card. She remembers everyone from before the stroke. Cards are still appreciated. There is discussion that Lois may be staying at Buffalo General for some time yet. She has been there since Oct 31 and was expected to stay up to 6 weeks. If she is continuing to make progress, she may be able to stay. This is an intensive therapy program with up to 6 hours of therapy each day. If she is moved to a sub acute therapy facility, it would not be as intensive of a program. Many feel that it is important to have intensive therapy in the early stages of rehabilitation.
Today Lois had hospital Thanksgiving dinner. She also requested that I take her for a roll around her floor in her wheelchair. We even went down to the lobby for a few minutes. Lois has been having a little trouble with a stomach ace. Yesterday (Wednesday) I went to PT with her and watched as she went through her daily therapy. This included lots of practice rolling over and sitting up as if to get out of bed. It takes her awhile but she can do this. She also is now able to walk (with assistance from PT professional) the entire length of the double metal bars. This is a big improvement as last week she could only take a few tiny steps (with assistance) She is also able to work her weak leg in a laying position with a small table between her legs. She is learning how to move her weak leg by using hip muscles. This is very encouraging. Lois’ PT professional Craig has given me an exercise that we can do in Lois’ room when she is not in therapy. We are to do this exercise up to three times a day. Her speech continues to improve with more words and sentences. Sometimes the words don’t fit the desired sentence, but it is improving. Her friend Sharon, brother Howard and I visited in the evening. Although she had been sleeping, she was able to have a conversation with us which included a complaint about the nurses. Up to this point we have had nothing but good to say about all the staff at the hospital.
Lois was having a great day when I visited at lunch time. She was alert and we chatted about our weekends. But when I arrived at 5 PM she was tired and complaining of trouble with her stomach after a short while she sent me home. I spoke with her doctor in the hall and he went to her room to see how she was. He also clarified something for me about the Botox treatment. It is something that will help down the road when Lois is walking. It will help stabilize her right leg when she puts pressure on it. They have decided to wait to determine the extent of recovery in her right leg. There has been some progress recently, and they hope more will follow. He said that it might be better to wait until she has regained some use of the leg. Lois’ brother Howard will visit again starting on Wednesday. Her friend Arlene is also planning a visit over Thanksgiving. If you would like to visit, please do so. She has asked for one at a time visitors and short visits. Tell her good things about your life and not so many questions about how she is doing. Her language is still very restricted and most questions should have yes or no answers.
It has been a crazy Monday at NewsTrax, and I have not had time to update this page. I saw Lois at lunch time today and she was in good spirits. Many times she is sleeping at that time as the therapy wears her out. We talked about her weekend. I was out of town and she had several guests. At one point early on in our conversation I said to her that we had a somewhat persistent client (which she remembered) who was trying to reach me but I was “dodging” the client’s call so that I could get other work done. Later when lunch arrived and we were talking about other things, she took the roll from her plate (chicken breast over greens with mixed veggies) and sat it aside. I asked her if she was going to eat the roll and she replied very clearly: “No, I am dodging the roll.” There has been speech improvement since Friday. Also, the doctor has decided to hold on the Botox treatment at this time. Lois says that she does have some feeling returning in her right leg but not in her right arm. The doctor wants to study this further before doing the Botox. Lois has requested a nail file, clippers and nail polish from home.
These updates may not be every day soon. When there is little to report, it seems hard to come up with stuff. I do know that she is to receive the Botox treatment today (Friday). This is to help her right leg be more stable. She has been watching TV more and did question us last night about what ever happened to Roy (of Siegfried & Roy). She remembered that he had been attacked but was out of it during the updates on his condition. Pat & I played a great guessing game last night to understand her question. She wanted to know about a famous person—the Michael Jackson topic brought the whole thing up. So we guessed and guessed and narrowed it down for a few minutes until we finally got it. It is like a bad game of charades.
Not much new to report. Lois continues to enjoy her private room. She worked in speech therapy on “three things” that she wanted to tell David. Maureen, her speech therapist, wrote them out and then Lois presented them to me when I arrived to visit. It was a challenge to understand what she was trying to say, but we figured it out. Her new lawyer, Herb Glose also came to visit and discussed some legal things with Lois. When dinner arrived and we took off the cover, it was meatloaf and mashed potatoes. It did not look good but she tried it anyway. And was surprised that it was good—she ate almost all her dinner and all the chocolate ice cream. We are working on thank you cards for the many gifts and flowers that she has received. Does anyone know a “Carol & Lindy?” They sent flowers but we cannot figure out a last name or address. If anyone (or Carol or Lindy) could contact me if would be greatly appreciated. Lois says she knows them but cannot help us with names or addresses.
Quite a bit to report today. Lois has been moved to a private room. On Monday the hospital tried to give Lois a roommate and she did not like it. They did find another bed for the woman but Lois was concerned that she would be getting a roommate soon—which was most likely. So we called and found that there was a private room available on the same floor. Her new room number is 511. It is smaller but it is quiet and private. She even has her own shower in the bathroom in the room. She is able to take a shower with assistance. The move seemed very good for Lois. Her mood was excellent and she ate well for the evening meal. It was broiled fish and rice with veggie soup. Lois continues to make progress with regard to speech. While she cannot always make a sentence, more words are coming and communication is improving. She is able to sing simple songs such as “Row Your Boat” and the nursery rhyme “Three Blind Mice.” And other songs as well. Lois’ visit with her brother went well, and he has now returned home. He plans to return just before Thanksgiving. Lois was able to plan a short game of checkers with Howard before she became too tired. She also received a manicure from her friend Pat on Sunday as a reward for saying over 15 words. We have ordered some books on tape thanks to her friend Ellen who also dropped off a few books of tape for Lois.
BIG NEWS: Lois has agreed to have visitors again. However, she requests only one visitor at a time. (my theory is that too many visitors at the same time was too much to understand) So if you had considered visiting but didn’t because of her request it is now okay to visit for a short time. Again, I suggest 4-6:30 PM as the best time to get her awake and alert. Please contact me if you have questions. I can be reached by email at dcyr@newstrax.com or phone 875-3135.
Important Notice: Lois has conveyed to us that she DOES NOT want visitors at this time. I felt that she could use some company once in awhile, but apparently I was wrong. She very clearly announced to us that visits are to be kept to a minimum with only a few visitors allowed. We are not sure of the reason for this, and I must say I don’t agree totally with it. But I must abide by her wishes. Please contact me if you would like to visit and I will ask her, but do not be upset if she says no. This whole thing has been very difficult for Lois.
Wow! another great day! Howard and I met with her doctor (Dr. Qazi). We heard the plan for the immediate future. Lois is to receive a Botox injection into her right leg which will help with some jerky movements in the leg. (Yes, the same substance used currently for cosmetic purposes is also used in stroke affected muscles) This will make it easier and safer for her to stand. He is impressed with her progress but will not give us a firm prognosis for the future. “Only time will tell.” He has told us to stop worrying about the size of her blood clot that it not important now. Her body will naturally dissolve it in time. We also learned that she is not on blood thinners as it could actually increase the possibility of another stroke. Dr. Qazi said he had no way to know the cause of the stroke. His field is the treatment AFTER strokes. Lois was able to speak with us about a number of things. While sitting her a chair, she played a game of balloon volleyball in her room with PT Adam. She was able to say “Howard” after several tries. She is also eating better.
What at great day! The progress that Lois is making is incredible. Speech is coming back fast. Her therapist says she can easily do 50-75 words and knows the meaning of them as well. She can recognize and say many of the alphabet also. But here is big news: Howard (Lois’ brother) and I went to visit Lois while she was in PT. She was able to pull herself up with her left arm to a standing position with the help of two bars. While Adam (her PT) was helping, she was able to take a very tiny step and then another. Then to return to her wheelchair and position herself in the chair by herself. She did this procedure THREE times all with a determined smile on her face. This was incredible to watch. We also met with her Discharge Planner (Tim) who reported that “the team” is very encouraged by her progress and that they hope to keep Lois at this facility for maybe a total of 6 weeks. He also said we would begin to discuss the types of equipment Lois would need when discharged—possibly to her own home! This has to be the best day so far.
Great progress with speech. Lois was able to do the letters A – G on a chart for me which was very exciting. She did not do the rest of the alphabet correctly but it was a huge improvement from two weeks ago. I have not heard from the “Team” as of yet so no news to report. They were to do the evaluation and then contact me. I will call them today. Lois is also able to repeat some phrases with only a small amount of difficulty. She is now able to say “Bye David” when I am leaving, which is heart tugging for me. Her brother Howard arrives today and will be spending a great deal of time with her. Also she is to get that hair cut today as the stylist went to the wrong hospital yesterday. If anyone would like to visit, the best time M-F is between 4 – 6 PM. and almost any time of Sat and Sun 11:30 AM – 7 PM.
Another good day for Lois. Although she was very sleepy at lunch time and very cranky when we had to wake her up to eat. The doctors are worried that she is getting enough to eat and are monitoring almost every mouthful. She continues to make progress in speech therapy and her therapist pushes her very hard. Sometimes Lois gets mad and then really talks. Today (Thu) all of her therapists and doctors are to have a “team” meeting to discuss Lois’ progress. Also today Lois is getting a hair cut from her regular stylist. Tony is coming to the hospital and will cut Lois’ hair in her room. She is looking forward to this and may get it cut short as it would be easier to care for in the hospital. She had nice visits from friends, Judith, Pat, Ellen and Carol.
Lois is making great progress in speech. Her speech therapist wrote me the following note: ” Lois did awesome today! Verbal sentence completions, verbal opposites—full sentences coming when she is bargaining with me to be done with therapy.” She still has frustration when trying to communicate but with each day she has new communication skills. I will get a report on how PT is going today (Wed) and see if any progress is being made with her right arm and leg. Best time to visit is early evening as that is when she is most alert and not in therapy or sleeping after therapy. Dinner is served at 5:10 PM each night. We are trying to get Lois a hair cut. Her regular salon has said that they can make a house call.
Still not much new to report. She does continue to work hard in her therapies and has added some new words. If she has 15 words by Sunday, her friend Pat will give her a manicure as a treat. Several times over the last few days she has struggled to relay something to me. We have played a little guessing game and been able to figure out what she wants. She wanted some additional sweat pants brought in for her to wear to therapy. After much guessing, I found out that the ones she wanted were in her basement in the cedar closet. There is still not much improvement in her right side but they continue to work on it. She has finally agreed to order the TV but has not been watching it much. She did watch Alias with her friend Sharon on Sunday night.
Not much new to report. Lois’ brother Howard is planning to visit starting on 11/14 until 11/16. Therapy will continue each day. Her doctor and the speech therapist have told me that Lois will begin a new therapy soon where “singing” is used to help work on speech. The creative side of the brain is the right side and that is where things like poetry and singing function. They feel that singing simple songs may trigger her speech. She has continued to add a few words like “well” and she did say to me on Friday night “you should go.” So some speech is returning and continues to increase. She has only been in rehab for one week—it seems more like a month.
More good progress with therapy yesterday. She continue to improve with regard to speech. The OT and PT continues to exhaust her and she spends most the time when not in therapy sleeping. I think that it is time that friends can visit. I suggest early evening visits (6-8 pm) This seems to be the time of day when she is the most alert and not in therapy. Also weekends are good from late afternoon on Saturday or most of the day on Sunday. There is little therapy on the weekend so she won’t be so exhausted. I suggest short visits of 15 minutes or so. She will be able to answer simple yes or no questions or happy to hear about your good news. If she is sleeping however, I request that you do not disturb her. She is almost always awake in the early evening. We do not know where she will go from here but she should be at Buffalo General for at least 3 more weeks. I will keep you posted. She has received many cards and gifts which are displayed in her room.
We will count Thursday as a good day. Lois’ speech therapist (Maureen) has reporting that Lois was able to say “one-two-three” and “Monday-Tuesday-Wednesday” during her session. We are also happy to report that she will be put on “regular” food starting on Monday. She has been on “mechanical soft” food which just means cut into very small pieces. She did not eat well yesterday but did drink the Ensure (a supplement drink). We have made a deal with the doctor that she will drink at least one can of Ensure with every meal no matter how much she eats. We have tried creative ways to make it taste better like mixing it with milk or juice. I spoke with her attending doctor at length yesterday. He is pleased with Lois’ progress and they are already planning for her next step which will be to go to a “sub acute” rehab facility. This could happen as soon as 30 days. No one is willing to speculate on how much recovery she will actually have—everyone remains optimistic.
There are good days and there are bad days. Yesterday was a bad day. When I arrived for the Lunch visit, she was in bed not the chair and not very responsive to questions. She did not want to eat and slept for most of the time that I was there. She did not speak. During the evening visit she was more responsive but agitated about something but we could not figure it out. She ate very little dinner. She did eat most of the Lobster Bisque that I brought from one of her favorite restaurants La Marina. She seemed to really enjoy it. Special thanks to Rosalie from La Marine for her help with this. She had a Reflexology/Massage treatment from her friend Bonnie and seemed more relaxed but still something was wrong. No one could determine what was wrong—frustrating for us as well as her.
The therapies for rehab are already starting to make a big difference. Lois is able to say a few words. Yesterday she answered the speech therapist with a clear “I don’t know!” They have told me that sometimes the next words to come back are the swear words - that should be fun! The Big News is that they have removed the feeding tube from her nose and believe that she will not need a surgical tube for feeding. This has made her much more comfortable and will increase her speech and ability to eat real food. I will bring in some of her favorite foods from local restaurants. She has an excellent OT person (Elaine) who works with Lois for many hours each day. She was dressed in one of her sweat suits and sat up in a chair including during lunch (which she ate very well). Yesterday Lois’ mood seemed better. She has seemed a bit down. I feel that they are working her so hard that she does not have time to be depressed - good plan. The nurses have continued to be excellent. Any request is almost immediately acted upon or I am told when they can do it and they do. This is a big change from the other hospital. Visiting is still going to be difficult as she is in therapy or exhausted from therapy most of the day. I am working on a schedule of the best and worst times to visit and will post it soon. I think it is almost time for her to see her friends.
Lois has started rehab therapies. She will receive Occupation Therapy (OT) in the morning each weekday. This included learning how to get dressed and to do some personal hygiene such as brushing teeth and combing hair. Simple tasks but not for Lois at this time. This also include learning to feed oneself. In the afternoon she will receive Physical Therapy (PT) which is dealing with the muscles. This includes stretching and moving the limbs that have been affected by the stroke. She has an excellent OT person and two excellent PT people who will be working with her over the next few months. Also squeezed into the day is Speech Therapy. Lois now has 4 words that she can use: Okay, Yea, Yea—But, and No. There is still great frustration in Lois on being able to get her point across. They are considering putting in a feeding tube that goes directly into her stomach instead of done through her nose. She has continued to eat but not enough they feel to sustain her.
Not much more to report from the weekend. We will know more details after she starts rehab today. I have not activated the phone in Lois’ room as I do not want the phone to ring and wake her or annoy her when no one is there to answer it. We are holding on setting up the TV also as Lois has confirmed that at this time she does not want to watch TV. She has been able to thumb through some magazines and catalogues. But she can only do this for a short time before becoming tired.
Lois is getting settled into her new rehab facility. So far we like all the nurses and the room is definitely better and much quieter. Today (Sunday) when I arrived at 11:30AM to visit, Lois was sitting up in a chair but immediately she was animated about something. I asked her a few questions to try to figure out what it was. The nurse came in to help but we just could not figure out what the issue was but she was most excited about it. Finally we decided that she wanted to go back into bed. But that wasn’t it. At 12PM the lunch arrived so we started to work on that, but I could tell that she is still upset over something. As she started to eat I noticed that the nurses had the radio tuned to a football game. I had not noticed it before. I asked Lois if she wanted me to turn it down. Well, the reaction was profound. She raised her left arm and brought it down and the body language was clear—FINALLY!!!. THIS was the problem. She wanted the game turned off. I knew that Lois was not a football fan but now I really know it. She finished her lunch more relaxed and I had to chuckle about the whole thing. Her frustration with not being able to communicate is great. She has been able to say “Yes” and “No” a few times when asked questions. Tomorrow she will start the rehab. I was asked to bring in some loose fitting clothes (sweat pants and t-shirt, shoes & socks). She will “get dressed” to go for therapy. She will have therapy for 3 hrs in the AM and then for another session in the afternoon Mon – Fri. As soon as I know this schedule, I will post it and give the best times to visit. After the therapy sessions she will be exhausted and will need a nap.
Lois has started rehab. She is in a much nicer room—bigger, she has a window and a view, bright blue walls. I like her nurses. They have been excellent at getting her checked in and letting me know how she is doing, etc. I have met her new doctor also and he seems good. Also 2 residents have been assigned to Lois so she really has 3 doctors. She will be doing all sorts of things starting on Monday. Today she is setting up in a special chair and was able to eat lunch while sitting up. She ate the most she has ever eaten. (The food seems better at General) Today the BBQ Beef was quite good and Lois nodded after the first bite which means it was good to her. Also today we will be working some easy puzzles to help her improve working with her left hand. I think she will be able to have short visits soon but keep checking here for details. It was exhausting for her to make the move from hospital to hospital yesterday and she spent most of the afternoon and evening sleeping. But today she is alert and reactive.
NEWS FLASH: Lois is being transferred to a rehab facility today! This is exciting and great news. She is being transferred to Buffalo General Hospital Rehab at 2 PM TODAY!! I do not know the room number yet but it will be on the 5th Floor. More updates as we know them.
Another good day for Lois! She sat up in a chair for an hour and a half. Although it was exhausting for her it seemed to pick up her spirits. She was able to eat lunch while sitting up and listen to her brother Howard who called. She even held the phone herself. She also looked through some magazines for a while. But the really big news is that she said a word—“Okay.” I had asked her if she was ready for lunch, and she just blurted out “Okay.” The PT people were very pleased with her progress with the sitting up. She will continue to sit up each day for longer periods of time. Eating has improved also and there is hope that the feeding tube will be removed. The food has not improved however. She refused to even try the “Tuna Surprise” from last night’s dinner. (there are not words to describe this) She was able to hold a small container of juice and drink from a straw on her own. We have met her case worker who is starting to work on rehab. They hope to be able to place her in an acute rehab facility very soon where she will receive 4 or more hours of therapy a day. The word for the day is “OKAY!”
Lois had a pretty good day yesterday. She has continued to eat a little each meal and though it has been hospital food she has relayed to me that it is not that bad. She did not like the “mystery chicken” yesterday but did like the very green pureed stuff which turned out to be peas. The people from PT were in again and got Lois out of bed and sat her in a chair. I had to leave the room it made me a nervous wreck. But they seem to know what they are doing and said that she did good. After 20 minutes in the chair they put her back in bed. She was exhausted and slept most of the afternoon. She has only had one pain shot a day for the last few days. Her doctor friend Sharon Z. visited in the early evening and said that she saw improvement. They have put the feeding tube back in but have promised that it will be temporary if she continues to eat. Another CT scan is planned for Friday. One slow, exhausting, day at a time!
Lois did not have a good day yesterday. She was responsive in the morning and early afternoon but by evening she would not answer questions and seemed basically out of it. I asked her if she was tired and wanted to sleep and she nodded. The PT evaluation went well and they have given her an arm and leg brace for her right side that will help to make her more comfortable. She also ate some “real food” for lunch and dinner. (Some sort of mystery meat which she did not like and some squash which she did like. She also enjoyed the pudding and thick apple juice—Lois loves sweets!) However, sometime between 6 and 7:30 PM she pulled out her feeding tube. This caused a big mess as the liquid continued to pump out. They cannot put the tube back in until this morning (Wednesday) as they must take an x-ray after the tube is inserted to be sure it is in the correct place. They are concerned that if she continues to pull at her tubes they will have to restrain her good arm. Yesterday marked the “One Week” point and the doctor has reminded me that the first 10 days are important to watch.
IMPORTANT: At this time we feel it is best if Lois not receive visitors. It seems to really make her tired after a visit. On Tuesday many people visited and she seemed happy to see everyone. But it may have taken its toll today making her exhausted. I know we all love Lois but it may be best right now to hold off on visits until she regains some strength.
Lois has been able to eat a little strawberry ice cream and chocolate pudding. She only had a few spoonfuls but when asked if she liked it, she nodded her head and smiled. The people from Physical Therapy are coming in today to do an evaluation. We are hoping that they will give us some easy exercises that we can help Lois do during the long hours between therapy. She is still complaining about pain in her right side. We watched a little TV last night but is seemed to quickly make her tired - probably more a statement about the programming than her ability to stay tuned. We have talked about how we will watch our favorite programs together when she is feeling better. She affirmed that she remembered that I had visited earlier in the day - we had a long visit mid day and that was encouraging as many times she will not remember visits due to her short term memory loss. (Can anyone remember the name of the blue fish in “Finding Nemo” that had the voice of Ellen DeGenerous?? She had short term memory trouble and I thought we could nickname Lois with that name for awhile)
Today (Monday) is a very important day. The Swallowing evaluation is important to determine the overall damage from the stroke. There will also be a test today on the size of the blood clot and its location in the brain. The doctor has reminded me that the “bleed was quite large” and that this will affect the chances to regain lost usage of her right side and her speech. The short term memory loss is to be expected according to the doctor. I will update this later today as we know more.
UPDATE: Some good news: She will be allowed some pureed food and juice (thick liquid) however they are keeping the feeding tube as she was not able to drink water without choking. They will continue to evaluate this every other day. The doctors will be recommending a rehab schedule very soon with a choice of facilities. She has been frustrated with not being able to speak—we are trying to get her to write any request on a clipboard. But she has yet to write out anything. They are also considering giving her a special speech board that has a number of pre programmed responses. She continues to have some pain and has been receiving a codeine shot every 4 hours.
Lois’ condition has remained unchanged since Friday. Yesterday she was running a slightly high temp but by 9 PM Sat night it was back to normal. Several friends have come to visit and even though she has relayed to me that she does not want visitors, I think she has enjoyed the visits. She does have her sense of smell and we have talked about the different smells of the many flowers she has received. She can read which is a good thing as I know she has always been a big reader even a member of a local Mystery Book Club. I have tried to get her to write out any requests or feelings but she has been unwilling to do this at this time. The doctors and nurses have continually said that we must wait to see the full extent of the damage. She is having some trouble with short term memory which we understand due to the amount of medication she is on. Monday the Swallowing people will return to see about putting her on real food. She has relayed to me several times that she is hungry. I am not sure that hospital food is the answer but it has to be better than the feeding tube.
Lois has settled into her new semi private room. She was able to sit up for several hours yesterday and remained alert for us most of the time. The professionals from the Swallowing Department have determined that Lois is not ready to go on real food. This is not a good thing as she hates the feeding tube. Her right side remains paralyzed and she cannot speak. We communicate with yes or no answers and some hand gestures. She cannot receive phone calls and at this time. We are asking friends not to visit. This is Lois’ request and I ask all of you to please honor it at this time. Cards can be sent to our office: NewsTrax, 255 Great Arrow Ave # 2, Buffalo, NY 14207. We will take them to the hospital and read them to her. I suggest humorous cards as she does react to funny things. Her address at the hospital is Millard Fillmore Hospital, c/o Lois Sugar Room 608A, 3 Gates Circle, Buffalo, NY 14209. Her doctor has stated that she is impressed with her progress but there is still a long way to go. Today we are taking a small radio for her room which will be tuned to her favorite “oldies” station.
Yesterday was a good day! Lois was much more alert and able to answer many yes or no questions with the nod or shake of her head. She is even complaining about being hungry. We have finally been able to contact her step mother in TN. Today will be an important day as they will be doing another CAT Scan to see if the blood clot has reduced. She will also be evaluated to see if they can remove the feeding tube and start her on real food. They keep saying that the next few days are critical to determine the extent of the damage. She remains on meds to reduce swelling of the brain and the blood clot. Please do not send flowers or cards at this time as they cannot be received in the ICU. Your prayers and good thoughts are greatly appreciated.
NEWS FLASH: They are moving Lois to a regular room! This is great news as they had originally thought that she would be in ICU for 5-10 days. The nurse said that she is very alert this morning. Her room number is 608A. We will have the results of the CAT scan by midday and will update that if possible.
MORE GREAT NEWS: Lois was able to sit up in bed for most of the day. She was alert and able to understand questions. The CAT scan revealed that there is no new bleeding. Her status has been upgraded to SERIOUS but stable. This is a great improvement! She will be able to have regular visitors soon. A new kind of tears at our office. We feel like running around the block! Again thanks to all for prayers and kind comments.
Condition remains unchanged. They have removed the neck brace which was put on to prevent her neck from moving. They were concerned that she had fractured a vertebrae when she collapsed. The surgeon says that they will not do surgery as the bleeding has stopped (This is a good thing). The blood clot however remains quite large and they are giving her drugs to try to dissolve the blood clot. There is still swelling in the brain. She is responsive to questions and can nod or shake her head to answer simple questions. She remains paralyzed on her right side. The next few days will be important to know the extent of the damage.
Lois is still listed in critical condition. The results of the extensive testing show that the cranial bleeding has stopped but has formed into a baseball sized clot on her brain, one of the largest blood clots that the doctors here have ever seen. We are advised that the level of her recovery will be determined by her progress over the next five days. Surgery to relieve the pressure from the blood clot may be necessary.
Lois suffers a massive stoke while leaving the grocery store and collapses in the parking lot. She is taken to Buffalo’s Millard Fillmore Hospital at Gates Circle where she is admitted to the Neurosurgical Intensive Care Unit. Her condition is listed as critical. She is paralyzed on the entire right side of her body. She is aware of and can identify people around her. She is unable to speak. Her doctors are concerned as the bleeding in her brain continues.