Recently, the speech therapist gave Rand a card, published by The American Stroke Association, to keep with him in case he gets lost, is alone, needs help and can’t communicate. I haven’t figured out the logistics yet – how and where to keep it handy and how he can remember that he has this aid, when and where to use it. It does contain some useful information and tips for all of us, so I thought I would pass them along to you. Even though you may not see Rand, these suggestions could be helpful with anyone who has had a stroke.
I have APHASIA (uh fay’zhuh), which makes it hard to
communicate. I have difficulty communicating
because I have had a stroke. Please speak slowly and clearly.
I have trouble finding my words
I have trouble making sentences
I have trouble understanding
I can only read a little bit
I can only write a little bit
I have trouble with numbers
I cannot use the phone
How You Can Help
Speak directly to me
Use short sentences
Give me time to answer
Ask short yes/no questions
Write key words or let me write
Use simple drawings
Show me maps or pictures
Do not shout. I am not deaf.
All of the above information applies to Rand. Even though he can play cards, he has trouble with numbers. Even though his comprehension is better, he is still easily confused. Even though he is more aware of details around him and his problem solving skills are improving, he has no strategies for getting himself out of moderate to difficult situations.
Keep Rand close in your hearts.
Love,
Connie
Wednesday, November 26, 2008
Wednesday, October 29, 2008
Sunday, October 26, 2008
October Update
Today Rand came home for Sunday brunch and we had the best time together! It was as close to a normal day as we have had since his stroke. We had some champagne with brunch, read the paper, took a nap, watched a football game – just like we used to. Rand has made such wonderful physical progress that now I can transfer him from his wheelchair alone without fear, he is stable and balanced, can walk with his cane, humming and singing during the process! I left him alone in the familyroom while I cooked, set the table, cleaned up, and had no concern about his safety or the safety of things around him. I talked to him from the kitchen and he responded as best as he could. What a change from several months ago! What a relief to be relaxed with him at home and what a joy it is to have him here. He was ready to “go home” after about four hours and gave no indication that he wanted to stay here. So many times today I wondered if I should move him home permanently, but deep down I know that would not be a good idea for either one of us. Now that being here is so much easier, relaxed and manageable, we will do it more often.
Last week Rand and I filled out our vote by mail ballots for the upcoming election. I was concerned about the process because the California ballot is four pages long and filled with propositions and candidates we’d never heard of. While thinking ahead, I was hard pressed to explain some of the issues to Rand so he would understand and could make an informed decision. As usual, he knocked my socks off! He knew more about some of the propositions/candidates than I did and he understood my explanations of the others perfectly! He also knew who he wanted to vote for, which incumbents he wanted in and which he wanted out of office. We went through the ballot much faster than I expected. There was one glitch – to make a selection on the ballot you have to draw a line between the front and back of an arrow next to the candidate’s name or the Yes/No box. One line is all that is accepted – not coloring in the space to complete the arrow – just one thin line. Rand insisted on making a coloring project out of the exercise and would not comply with the instructions. We solved the problem by having him color in the arrows on the trial ballot and then I copied it to the official document with his blessing. I think part of the problem is his impaired vision – coloring in the arrow was easier for him to see. Of course, there’s always the stubborn Norwegian factor!
Rand is doing so well, his problem solving skills are improving along with his physical abilities. He is beginning to see possibilities in Solitare, to look ahead and see two or three moves coming up. He notices details more often and I would guess that his receptive language is about 95% accurate. His expressive language remains severely impaired but I am getting better at understanding his wants and needs.
Last week Rand had his regular blood draw to check on viscosity (almost perfect) and he had the full blood panel at the same time. His cholesterol, LDL, postasium, etc, are wonderful – cholesterol is 153. He’s healthy as a horse and has lost four pounds on top of it all! The best part is that he is content, in great spirits, his “Can Do” attitude never fails him, and he continues to be the Sweetheart of the Western World!
Rand’s sister, Karen, and our niece Kiki, will be arriving in two weeks for a whirlwind visit. It will be so wonderful to have them here and we are eagerly awaiting their time with us. We had more company from Minnesota in the last month and I made a fast trip to Moorhead/Fargo for my college class reunion in early October. It was great to see old friends and to wonder/guess who some of them were! The feeling was mutual. I also had the pleasure of spending some time at my sister’s school in Fertile, MN, reading to the first and second grade classes. I got my “kid fix” and had a wonderful time doing it.
Keep Rand close to your hearts. It has worked wonders so far! He loves company, cards and letters, so drop him a line or email him at my address and I will read it to him.
Love,
Connie
Last week Rand and I filled out our vote by mail ballots for the upcoming election. I was concerned about the process because the California ballot is four pages long and filled with propositions and candidates we’d never heard of. While thinking ahead, I was hard pressed to explain some of the issues to Rand so he would understand and could make an informed decision. As usual, he knocked my socks off! He knew more about some of the propositions/candidates than I did and he understood my explanations of the others perfectly! He also knew who he wanted to vote for, which incumbents he wanted in and which he wanted out of office. We went through the ballot much faster than I expected. There was one glitch – to make a selection on the ballot you have to draw a line between the front and back of an arrow next to the candidate’s name or the Yes/No box. One line is all that is accepted – not coloring in the space to complete the arrow – just one thin line. Rand insisted on making a coloring project out of the exercise and would not comply with the instructions. We solved the problem by having him color in the arrows on the trial ballot and then I copied it to the official document with his blessing. I think part of the problem is his impaired vision – coloring in the arrow was easier for him to see. Of course, there’s always the stubborn Norwegian factor!
Rand is doing so well, his problem solving skills are improving along with his physical abilities. He is beginning to see possibilities in Solitare, to look ahead and see two or three moves coming up. He notices details more often and I would guess that his receptive language is about 95% accurate. His expressive language remains severely impaired but I am getting better at understanding his wants and needs.
Last week Rand had his regular blood draw to check on viscosity (almost perfect) and he had the full blood panel at the same time. His cholesterol, LDL, postasium, etc, are wonderful – cholesterol is 153. He’s healthy as a horse and has lost four pounds on top of it all! The best part is that he is content, in great spirits, his “Can Do” attitude never fails him, and he continues to be the Sweetheart of the Western World!
Rand’s sister, Karen, and our niece Kiki, will be arriving in two weeks for a whirlwind visit. It will be so wonderful to have them here and we are eagerly awaiting their time with us. We had more company from Minnesota in the last month and I made a fast trip to Moorhead/Fargo for my college class reunion in early October. It was great to see old friends and to wonder/guess who some of them were! The feeling was mutual. I also had the pleasure of spending some time at my sister’s school in Fertile, MN, reading to the first and second grade classes. I got my “kid fix” and had a wonderful time doing it.
Keep Rand close to your hearts. It has worked wonders so far! He loves company, cards and letters, so drop him a line or email him at my address and I will read it to him.
Love,
Connie
Wednesday, September 17, 2008
September 17, 2008
Fall is in the air - Rand’s and my schedules are filling up again after a summer respite and it is time for a new update on Rand.
We had two sets of guests from Minnesota this summer, which was great fun. We did as many sights and events as we could and Rand went with us on many of them. We had several serious problems with the Chevy minivan conversion – in fact we had one too many so I traded it in and got a Honda Odyssey instead. The problems were with the conversion, not with the Chevy. The Honda conversion is by a different company and so far we are very happy with it. We named it Henry after Henry Honda/Fonda!
We had lunch on the beach in Capitola more than once this summer.
Rand is doing so well in most aspects of his life. Yesterday he finished the fall series of golf lessons. When he started a year ago, he could not stand up alone to hit the ball. Instead he sat in a chair and hit from there or Thuan held him in a standing position. At the beginning of this session a few weeks ago, he could stand, hit six balls and then had to sit down and rest. Yesterday he stood, hit 21 balls in succession and then rested for a few minutes, stood and hit 20 more – on and on! Thuan no longer has to hold him in place, he just stands behind him, hands at the ready. Rand’s stamina and balance are so improved. Recently, he stood up in his room, took his cane, walked out the front door, down the ramp, down the driveway, down the sidewalk about six houses, turned around and walked back to his room – unassisted! Three caregivers were around him to keep him safe, but he was fine on his own! We all jumped for joy and applauded his accomplishment! Just think, 30 months ago he couldn’t even hold his head up! Next week he starts adapted bowling again. He continues to have physical therapy every three weeks at the hospital and Thuan works with him two hours a day, following the therapist’s direction. It makes all the difference in the world!
Notice that Thuan is not holding Rand in place but is ready to keep him safe while he swings the club.
Thuan doesn't even have to duck when Rand follows through on his swing!
Every Monday Rand attends a small group speech therapy class at a local rehab hospital. He is more verbal now, but his words still do not make sense. I’m working on getting him involved/enrolled in a speech program at Stanford. He also has music therapy once a week, which he enjoys. We have made little progress in the area of reading and writing. The letters, sounds, pictures just don’t stay with him from one day to the next. On the other hand, he is getting very good at Solitaire! A year ago he couldn’t play because he couldn’t tell the difference between the colors and suits. He couldn’t put the numbers in ascending or descending order. Now he can do all of those things but still struggles with seeing/understanding the possibilities of combining cards. We play every day, a friend visits him every week and they play poker and other card games. Rand usually wins! As usual, he is amazing, has a wonderful attitude and is the sweetheart of the Western World!
Rand loves company, loves to go on outings no matter where. The destination doesn’t matter to him, it is the journey that he enjoys. Often we get in Henry and just go for a drive in the country, stop for lunch or ice cream and he is happy as a clam!
All is well. Stop by for a visit, send a card but above all, keep Rand close to your heart, in your thoughts and prayers. He is remarkable!
Love,
Connie
We had two sets of guests from Minnesota this summer, which was great fun. We did as many sights and events as we could and Rand went with us on many of them. We had several serious problems with the Chevy minivan conversion – in fact we had one too many so I traded it in and got a Honda Odyssey instead. The problems were with the conversion, not with the Chevy. The Honda conversion is by a different company and so far we are very happy with it. We named it Henry after Henry Honda/Fonda!
We had lunch on the beach in Capitola more than once this summer.Rand is doing so well in most aspects of his life. Yesterday he finished the fall series of golf lessons. When he started a year ago, he could not stand up alone to hit the ball. Instead he sat in a chair and hit from there or Thuan held him in a standing position. At the beginning of this session a few weeks ago, he could stand, hit six balls and then had to sit down and rest. Yesterday he stood, hit 21 balls in succession and then rested for a few minutes, stood and hit 20 more – on and on! Thuan no longer has to hold him in place, he just stands behind him, hands at the ready. Rand’s stamina and balance are so improved. Recently, he stood up in his room, took his cane, walked out the front door, down the ramp, down the driveway, down the sidewalk about six houses, turned around and walked back to his room – unassisted! Three caregivers were around him to keep him safe, but he was fine on his own! We all jumped for joy and applauded his accomplishment! Just think, 30 months ago he couldn’t even hold his head up! Next week he starts adapted bowling again. He continues to have physical therapy every three weeks at the hospital and Thuan works with him two hours a day, following the therapist’s direction. It makes all the difference in the world!
Notice that Thuan is not holding Rand in place but is ready to keep him safe while he swings the club.
Thuan doesn't even have to duck when Rand follows through on his swing!Every Monday Rand attends a small group speech therapy class at a local rehab hospital. He is more verbal now, but his words still do not make sense. I’m working on getting him involved/enrolled in a speech program at Stanford. He also has music therapy once a week, which he enjoys. We have made little progress in the area of reading and writing. The letters, sounds, pictures just don’t stay with him from one day to the next. On the other hand, he is getting very good at Solitaire! A year ago he couldn’t play because he couldn’t tell the difference between the colors and suits. He couldn’t put the numbers in ascending or descending order. Now he can do all of those things but still struggles with seeing/understanding the possibilities of combining cards. We play every day, a friend visits him every week and they play poker and other card games. Rand usually wins! As usual, he is amazing, has a wonderful attitude and is the sweetheart of the Western World!
Rand loves company, loves to go on outings no matter where. The destination doesn’t matter to him, it is the journey that he enjoys. Often we get in Henry and just go for a drive in the country, stop for lunch or ice cream and he is happy as a clam!
All is well. Stop by for a visit, send a card but above all, keep Rand close to your heart, in your thoughts and prayers. He is remarkable!
Love,
Connie
Sunday, August 10, 2008
Friday, June 20, 2008
Captain America near the 4th of July - AN UPDATE
When Rand was teaching eighth grade American History, he painted his classroom red, white and blue. There were stars and stripes on the walls, door, bulletin boards and his podium. He frequently wore flag inspired shirts, his “Americana” necktie collection was legendary and his patriotic spirit earned him the nickname “Captain America.” His room at the assisted living home is also decorated in red, white and blue, although I’m not sure he knows why. He has one red wheelchair and one blue one. There is a large American flag outside that he watches and informs me when it needs straightening or care. Rand was always the first one in line at the voting booth and refused to vote absentee, as he wanted to exercise his franchise in person. Now he has permanent vote-by-mail status and we talk the candidates and ballot issues through thoroughly before each election. He keeps abreast of current events better than I do and he has a clear sense of whom and what he wants to vote for.
Rand’s mental and physical progress in the last six months has been nothing short of phenomenal in my book. In the large scheme of things, it probably isn’t much, but in our world, it is huge. He can now walk distances that are more than double what he could cover before Christmas. Then it took him 17 minutes to walk the short course at rehab, now it is just seconds over five minutes to cover the long version. Last winter when he was doing so many jigsaw puzzles, getting the pieces to fit was a by guess and by gosh proposition. Now he can use some logic, some problem solving strategies and the process of elimination to find and place the pieces correctly. A five hundred piece puzzle is still a big challenge and takes a lot of time, but now he can sort out the edge pieces and begin making the frame all by himself. He continues to clean everyone’s clock in Blackjack and is getting pretty good at Solitaire.
The reading project is slower than slow but he isn’t giving up, nor am I. He can do dot-to-dot pictures using the alphabet with fewer and fewer mistakes. Colors and numbers are still a mystery to him but he keeps working at them. His sister sends him postcards from Wisconsin each week and he is now attempting to read them out loud before turning them over to me. I read, “Dear Rand,” and he impatiently says, “Yes, yes” as in “that’s obvious, get on with it!” He saves every postcard, studies it and then puts it in his red, white and blue box of treasures for safe-keeping. Six months ago, “Dear Rand” would have brought a look of detachment and disinterest. Now he’s all ears.
Rand’s many activities are on summer hiatus so it is nice for us to have some time off too. He does go to a group speech class every week, but he doesn’t attempt to participate yet. Among friends and family, he is much more verbal but still not intelligible. He enjoys music therapy every week and is doing well. The speech-generating device is sitting idle as Rand has moved somewhat beyond it. Those of us who are with him every day have become pretty good at interpreting his wants and needs which is a strength of the device. Because he cannot read, spell or recognize letters, he cannot use it to conduct conversations, make comments, join in discussions, ask questions, all the things he so desperately wants to do.
Thuan, our wonderful CNA, who works with Rand every day, has offered to take a day off and go with us on an outing in July. That is going to be so much fun! We will leave first thing in the morning and return that evening. This will be Rand’s first full, fun day away in well over two years! Rand’s physical needs are such that I can’t care for him alone, but with Thuan there, we can go pretty much anywhere we want. We are in the process of planning the day and I think it will include a stop at a casino! Rand doesn’t remember the plans from one day to the next but when we discuss it, he is very excited. I hope this will be the first of many expeditions/opplevelses for us and that Rand will enjoy and remember it.
You should see Rand maneuvering in his “hot rod” electric wheelchair. Everyone who encounters him in action is amazed at how agile he is, how wonderful his spatial awareness is, how careful and polite he is around groups of people. It has given him so much independence, even though he pooh-poohs it, he couldn’t go back to depending on others to move him about. I doubt if he remembers what it was like to not be totally in control.
Rand enjoys coming home now. For a long time he either refused to come here or would only stay outside on the patio. Now he chooses our house over other places to go. Recently, I gave him the choice of several restaurants to go to for dinner. He shook his head no to each one. In desperation, I suggested we have dinner at home. BINGO! That was a big yes! I don’t know who was happier – Rand or me!
I’m still trying to get away one day a month with varying degrees of success. With Rand so much more aware of his surroundings and improved memory, I feel I have a little more flexibility. He understands where I am going and why, why I might be late one day, what errands are, and at times he goes grocery shopping with me. His tolerance for that is about the same as before his stroke, but he does enjoy getting out, although Target is still his favorite destination!
The long and short of it is that all is well. Captain America is so far ahead of what I ever thought was possible, I am in awe of him every day. He is content, determined, game for anything, and the Sweetheart of the Western World! He loves company, cards and letters, so keep them coming.
Keep Rand close to your hearts, in your thoughts and prayers.
Love,
Connie
Rand’s mental and physical progress in the last six months has been nothing short of phenomenal in my book. In the large scheme of things, it probably isn’t much, but in our world, it is huge. He can now walk distances that are more than double what he could cover before Christmas. Then it took him 17 minutes to walk the short course at rehab, now it is just seconds over five minutes to cover the long version. Last winter when he was doing so many jigsaw puzzles, getting the pieces to fit was a by guess and by gosh proposition. Now he can use some logic, some problem solving strategies and the process of elimination to find and place the pieces correctly. A five hundred piece puzzle is still a big challenge and takes a lot of time, but now he can sort out the edge pieces and begin making the frame all by himself. He continues to clean everyone’s clock in Blackjack and is getting pretty good at Solitaire.
The reading project is slower than slow but he isn’t giving up, nor am I. He can do dot-to-dot pictures using the alphabet with fewer and fewer mistakes. Colors and numbers are still a mystery to him but he keeps working at them. His sister sends him postcards from Wisconsin each week and he is now attempting to read them out loud before turning them over to me. I read, “Dear Rand,” and he impatiently says, “Yes, yes” as in “that’s obvious, get on with it!” He saves every postcard, studies it and then puts it in his red, white and blue box of treasures for safe-keeping. Six months ago, “Dear Rand” would have brought a look of detachment and disinterest. Now he’s all ears.
Rand’s many activities are on summer hiatus so it is nice for us to have some time off too. He does go to a group speech class every week, but he doesn’t attempt to participate yet. Among friends and family, he is much more verbal but still not intelligible. He enjoys music therapy every week and is doing well. The speech-generating device is sitting idle as Rand has moved somewhat beyond it. Those of us who are with him every day have become pretty good at interpreting his wants and needs which is a strength of the device. Because he cannot read, spell or recognize letters, he cannot use it to conduct conversations, make comments, join in discussions, ask questions, all the things he so desperately wants to do.
Thuan, our wonderful CNA, who works with Rand every day, has offered to take a day off and go with us on an outing in July. That is going to be so much fun! We will leave first thing in the morning and return that evening. This will be Rand’s first full, fun day away in well over two years! Rand’s physical needs are such that I can’t care for him alone, but with Thuan there, we can go pretty much anywhere we want. We are in the process of planning the day and I think it will include a stop at a casino! Rand doesn’t remember the plans from one day to the next but when we discuss it, he is very excited. I hope this will be the first of many expeditions/opplevelses for us and that Rand will enjoy and remember it.
You should see Rand maneuvering in his “hot rod” electric wheelchair. Everyone who encounters him in action is amazed at how agile he is, how wonderful his spatial awareness is, how careful and polite he is around groups of people. It has given him so much independence, even though he pooh-poohs it, he couldn’t go back to depending on others to move him about. I doubt if he remembers what it was like to not be totally in control.
Rand enjoys coming home now. For a long time he either refused to come here or would only stay outside on the patio. Now he chooses our house over other places to go. Recently, I gave him the choice of several restaurants to go to for dinner. He shook his head no to each one. In desperation, I suggested we have dinner at home. BINGO! That was a big yes! I don’t know who was happier – Rand or me!
I’m still trying to get away one day a month with varying degrees of success. With Rand so much more aware of his surroundings and improved memory, I feel I have a little more flexibility. He understands where I am going and why, why I might be late one day, what errands are, and at times he goes grocery shopping with me. His tolerance for that is about the same as before his stroke, but he does enjoy getting out, although Target is still his favorite destination!
The long and short of it is that all is well. Captain America is so far ahead of what I ever thought was possible, I am in awe of him every day. He is content, determined, game for anything, and the Sweetheart of the Western World! He loves company, cards and letters, so keep them coming.
Keep Rand close to your hearts, in your thoughts and prayers.
Love,
Connie
Thursday, May 15, 2008
May 15, 2008
Last week, Rand's doctor ordered a CT scan of Rand's brain as he hadn't had one for over two years. The doctor warned me that the progress I'm seeing in Rand is the result of minute nerve endings that are reconnecting (there are millions more to go) and they are so tiny that they will not show up on the scan. I stood behind the tech during the scan and I was so happy to see what appeared to me to be a smaller area of the "black hole" that was the left side of Rand's brain. I just knew that there would be progress shown in the scan! Obviously, I didn't know what I was seeing as the doctor called a couple of days later to inform me that there is no change in Rand's brain in the last two years. That news was a punch in the stomach as I was convinced that there was/would be visible improvement.
I guess that is why the reading project is not going very well. It has only been a month or so, but I don't see any progress in letter, word, color or shape recognition. He can not remember things from one minute to the next, let alone a few hours or a day. He can sing the alphabet song with about 60% accuracy, but he can not recognize any of the letters in or out of order. He has memorized several names and a couple of short phrases that he can write but that is about it. Now I'm even wondering about the Speech Generating Device - is it worth the hundreds of hours it will take to program it.
This news was very depressing. I really, really thought there would be evidence that the massive damage was slowly being repaired by time, mental stimulation, physical exercise, relearning to coordinate his body, to attend to things around him, problem solving, etc. I know Rand has made tremendous progress and I guess I will have to be content with that. I will have to start accepting the fact that the damage can not be fixed, even in small bits and pieces.
Rand has not asked about the results of the CT scan and I haven't volunteered any information. I'm sure he doesn't even remember going to the hospital for the test. So be it.
Love,
Connie
I guess that is why the reading project is not going very well. It has only been a month or so, but I don't see any progress in letter, word, color or shape recognition. He can not remember things from one minute to the next, let alone a few hours or a day. He can sing the alphabet song with about 60% accuracy, but he can not recognize any of the letters in or out of order. He has memorized several names and a couple of short phrases that he can write but that is about it. Now I'm even wondering about the Speech Generating Device - is it worth the hundreds of hours it will take to program it.
This news was very depressing. I really, really thought there would be evidence that the massive damage was slowly being repaired by time, mental stimulation, physical exercise, relearning to coordinate his body, to attend to things around him, problem solving, etc. I know Rand has made tremendous progress and I guess I will have to be content with that. I will have to start accepting the fact that the damage can not be fixed, even in small bits and pieces.
Rand has not asked about the results of the CT scan and I haven't volunteered any information. I'm sure he doesn't even remember going to the hospital for the test. So be it.
Love,
Connie
Sunday, April 27, 2008
April 21, 2008
It has been a busy six weeks or so since the last update on Rand. Every day he surprises me with the new skills and information that he possesses. His walking has improved so much. He has learned to correct his right foot so it points straight ahead, not off to the side. His balance is good, his stamina is amazing and his confidence and stick-to-it-tiveness knows no bounds! Thuan walks with him every day and it really shows. He still has PT every three weeks, bowling every Tuesday and music therapy every Wednesday. He is learning all seven verses to "Amazing Grace!" Adaptive Bowling will end soon and on May 8 I have him enrolled in an adaptive golf tournament. Shortly after that, he will begin the spring session of golf lessons at the driving range. He "talks" much more now and even though he is not generally understandable, his verbalization is much improved and his willingness to speak is commonplace.
Rand's sister, Karen and her husband Kaj, were here for ten glorious days in April. They escaped the last of the record breaking snow in Madison, WI. The four of us went on outings almost every day, including a picnic with friends from Minnesota. They got to see Rand in PT, bowling and music, driving his hot rod, negotiating the mini-van, sidewalks, stores and parks. Rand and Karen painted together, played catch, talked, listened to Karen read parts of her memoirs, and laughed uproariously at family stories. It was so wonderful to have them here. While the rest of us were having fun, Kaj was tackling projects around the house - painting a bathroom, fixing whatever was broken, sharpening knives, doing so many things that needed to be done. What a blessing they both are! We miss them already.
Rand continues to be healthy as a horse, thank goodness. His blood viscosity levels are still uneven so we visit "The Vampire Room" about every two weeks to have it checked. He didn't have a cold or even the sniffles this winter.
For his birthday I got him a 40" Sony HD TV and a Nintendo Wii video game. His room is now the most popular place at his house! You can hear whoops and hollars coming from his room as he and friends play Wii bowling, golf, etc. What fun!
Our latest project is to teach Rand to read. I am in the process of trying to assess what he knows and how he learns. He and his brain are so incredible that I am having a hard time figuring out where to start. He does not know any letters of the alphabet, can not recognize them and does not know what sounds the letters make. He does not know colors or shapes or any sight words. Yet, he can write his name, my name, sometimes correct the spelling of other's names. He has memorized some words and patterns but has no strategies to understand other words. He is skeptical about his ability to learn to read but we're going to give it a try. He understands that the materials will be child-ish and he is an eager student. His short term memory is poor so this will be a long process. As long as he is willing to work at it, so am I.
Karen and Kaj brought me a book that I highly recommend. If you are interested in strokes and brain function in easy to understand terms and in plain English, then run, do not walk to the nearest bookstore (or online) and pick up a paperback copy of "Stroke of Insight," by Jill Bolte Taylor. It is a fast and fascinating read about what it is like to have a stroke, told by a brain researcher (the author) and the story of her recovery. She had a very different stroke than Rand, but I could see and hear him on every page and start to understand what it was like for him in the months following his stroke. She had a total recovery eight years later, but every step of the way was painful, frustrating, scary and triumphant - just like it is for Rand.
Thuan is beside Rand for safety, but Rand can walk alone short distances now. Rand's sister Karen is in the background.
Keep those cards and letters coming and visit when you can. Rand loves company and so do I!
Keep Rand close in your hearts.
Love,
Connie
Rand's sister, Karen and her husband Kaj, were here for ten glorious days in April. They escaped the last of the record breaking snow in Madison, WI. The four of us went on outings almost every day, including a picnic with friends from Minnesota. They got to see Rand in PT, bowling and music, driving his hot rod, negotiating the mini-van, sidewalks, stores and parks. Rand and Karen painted together, played catch, talked, listened to Karen read parts of her memoirs, and laughed uproariously at family stories. It was so wonderful to have them here. While the rest of us were having fun, Kaj was tackling projects around the house - painting a bathroom, fixing whatever was broken, sharpening knives, doing so many things that needed to be done. What a blessing they both are! We miss them already.
Rand continues to be healthy as a horse, thank goodness. His blood viscosity levels are still uneven so we visit "The Vampire Room" about every two weeks to have it checked. He didn't have a cold or even the sniffles this winter.
For his birthday I got him a 40" Sony HD TV and a Nintendo Wii video game. His room is now the most popular place at his house! You can hear whoops and hollars coming from his room as he and friends play Wii bowling, golf, etc. What fun!
Our latest project is to teach Rand to read. I am in the process of trying to assess what he knows and how he learns. He and his brain are so incredible that I am having a hard time figuring out where to start. He does not know any letters of the alphabet, can not recognize them and does not know what sounds the letters make. He does not know colors or shapes or any sight words. Yet, he can write his name, my name, sometimes correct the spelling of other's names. He has memorized some words and patterns but has no strategies to understand other words. He is skeptical about his ability to learn to read but we're going to give it a try. He understands that the materials will be child-ish and he is an eager student. His short term memory is poor so this will be a long process. As long as he is willing to work at it, so am I.
Karen and Kaj brought me a book that I highly recommend. If you are interested in strokes and brain function in easy to understand terms and in plain English, then run, do not walk to the nearest bookstore (or online) and pick up a paperback copy of "Stroke of Insight," by Jill Bolte Taylor. It is a fast and fascinating read about what it is like to have a stroke, told by a brain researcher (the author) and the story of her recovery. She had a very different stroke than Rand, but I could see and hear him on every page and start to understand what it was like for him in the months following his stroke. She had a total recovery eight years later, but every step of the way was painful, frustrating, scary and triumphant - just like it is for Rand.

Thuan is beside Rand for safety, but Rand can walk alone short distances now. Rand's sister Karen is in the background.
Keep those cards and letters coming and visit when you can. Rand loves company and so do I!
Keep Rand close in your hearts.
Love,
Connie
Friday, March 14, 2008
March 12, 2008
Rand was overwhelmed today when his belated Christmas and birthday presents finally arrived all at one time. At 9:00 this morning the Geek Squad from Best Buy marched into his room with a 40" LCD HDTV and I was right behind them with a wrapped box containing a Nintendo Wii game station. He didn't know what hit him! The Geek Squad set up the TV in no time, added the Wii and stuck around to teach us the basics of operation. What fun!! We played golf and bowling before Rand wanted to see his regular shows on TV. He was astounded - he couldn't get over the BIG picture, the sound, the ease of the remote - the BIG picture! He played with the remote for some time and then asked me for help. He is probably now propped up in bed, experimenting with the remote as we speak.
Two years ago, when I knew that Rand was coming out of the hospital, I bought a 24" TV for him as a temporary fix. I figured that in a few months it would become the TV set in the caregiver's room at our house when Rand came home. Things changed and Plan A didn't happen. With his impaired vision, I decided that he needed a large screen to help him enjoy one of the pleasures of his days. Now he has it and he is thrilled! The 24" TV did end up in the caregiver's room - the caregivers at Rand's Home. They had a weenie 12" screen TV and now, they joke, they have a "BIG SCREEN TV!" I don't know who is happier - Rand or the caregivers!!
The Nintendo Wii game system is recommended by many physical and occupational therapists as excellent exercise for seniors and especially, wheelchair bound folks. In fact, last Sunday's newspaper supplemental magazine had an article about it and how it is being used at retirement centers, nursing and assisted living homes, etc. for the exercise benefits. Jay Ar and Thuan know how to play it so they are excited about involving Rand. I think these purchases will pay off in the long run, big time! I am a little concerned about the fact that these are high tech gadgets and you have to have some knowledge to operate them. Friends have reminded me about how I felt about the electric wheelchair and Rand is now a whiz at that! They are right - Rand is amazing in his ability to learn and to cope.
The eight week adaptive bowling program ended this week. Rand improved so much - in his balance, stamina, aim, hand-eye coordination. The first two weeks Rand bowled sitting in his wheelchair. Yesterday he bowled standing up for 2 of the 3 games and finally sat down for for the last few frames. He did so well and enjoyed it so much. The next eight week program starts again in two weeks and ends in time for the spring golf program to begin! Rand has PT practice for two hours a day, five days a week at home with Thuan, and a full bore PT session once every three weeks. Just before the holidays, the PT timed Rand walking the length of the hallway in both directions in the PT department. I don't know how far that is, but it is a considerable distance. The first time he walked it, it took him just over 17 minutes. Last week he covered the same distance in 5 minutes and six seconds! WOW! Practice pays off. Rand also has music therapy once a week and they are working on all seven verses of "Amazing Grace!" Whew! Rand, his schedule and accomplishments are a full time job!
Thank you for your continued support of and interest in Rand's progress. He is amazing and hasn't slowed down for a minute! He tolerates my whims as he always has, and now participates in them with gusto. People are still in disbelief when I tell them that he is bowling and playing golf - in a adaptive manner and setting, of course, but he has come so far and is willing to try anything. That's the best therapy in the world!!
Keep Rand close to your hearts - he is remarkable.
Love,
Connie
Two years ago, when I knew that Rand was coming out of the hospital, I bought a 24" TV for him as a temporary fix. I figured that in a few months it would become the TV set in the caregiver's room at our house when Rand came home. Things changed and Plan A didn't happen. With his impaired vision, I decided that he needed a large screen to help him enjoy one of the pleasures of his days. Now he has it and he is thrilled! The 24" TV did end up in the caregiver's room - the caregivers at Rand's Home. They had a weenie 12" screen TV and now, they joke, they have a "BIG SCREEN TV!" I don't know who is happier - Rand or the caregivers!!
The Nintendo Wii game system is recommended by many physical and occupational therapists as excellent exercise for seniors and especially, wheelchair bound folks. In fact, last Sunday's newspaper supplemental magazine had an article about it and how it is being used at retirement centers, nursing and assisted living homes, etc. for the exercise benefits. Jay Ar and Thuan know how to play it so they are excited about involving Rand. I think these purchases will pay off in the long run, big time! I am a little concerned about the fact that these are high tech gadgets and you have to have some knowledge to operate them. Friends have reminded me about how I felt about the electric wheelchair and Rand is now a whiz at that! They are right - Rand is amazing in his ability to learn and to cope.
The eight week adaptive bowling program ended this week. Rand improved so much - in his balance, stamina, aim, hand-eye coordination. The first two weeks Rand bowled sitting in his wheelchair. Yesterday he bowled standing up for 2 of the 3 games and finally sat down for for the last few frames. He did so well and enjoyed it so much. The next eight week program starts again in two weeks and ends in time for the spring golf program to begin! Rand has PT practice for two hours a day, five days a week at home with Thuan, and a full bore PT session once every three weeks. Just before the holidays, the PT timed Rand walking the length of the hallway in both directions in the PT department. I don't know how far that is, but it is a considerable distance. The first time he walked it, it took him just over 17 minutes. Last week he covered the same distance in 5 minutes and six seconds! WOW! Practice pays off. Rand also has music therapy once a week and they are working on all seven verses of "Amazing Grace!" Whew! Rand, his schedule and accomplishments are a full time job!
Thank you for your continued support of and interest in Rand's progress. He is amazing and hasn't slowed down for a minute! He tolerates my whims as he always has, and now participates in them with gusto. People are still in disbelief when I tell them that he is bowling and playing golf - in a adaptive manner and setting, of course, but he has come so far and is willing to try anything. That's the best therapy in the world!!
Keep Rand close to your hearts - he is remarkable.
Love,
Connie
Sunday, February 17, 2008
February 14, 2008
For the last several weeks, Thuan and I have been trying to figure out ways to make bowling work better for Rand. He can stand and bowl for a while but then he gets tired and has to sit down. Throwing the ball from his electric or manual wheelchairs has its drawbacks, as the ball hits the wheels, the brakes, the arm rest, anything else that can get in the way, does.
This week, I found an unused lounge chair near the bowling alley bar and got permission to bring it out onto the alley. Rand loved it - it was a bit lower than his wheelchair, it has no strange protrusions, it has arm rests to support him, nothing goes bump in the night and it is comfortable between shots! Below are some photos of this unique solution. It proved to be temporary as he needed the extra height that his electric wheelchair gives him and by the middle of the second game, he was back to his hotrod. But it was fun while it lasted! Not too many people can claim to have bowled from a bar lounge chair! Every week Rand bowls better and better. This week he had several spares and two strikes! He's enjoying himself and that's what counts.
We are in the third week of "The Puzzle From Hell" - a photo of dozens of beautiful, multi-colored butterflies, with no rhyme or reason to the top, bottom or sides. Several of us have been slaving over it and, along with Rand, should have it done in the next day or two. Then - a break from puzzles!! A friend gave Rand a beautiful set of wooden Tangrams for Christmas. The patterns are too small for him to deal with so she blew them up to fit the pieces, glued them to poster board and made several patterns that are the right size. That will be our next project. What a wonderful gift!
"Max," the speech generating device, is still sitting in the wings. We have been so busy with Rand's on-going participation in Recovering Function and other therapies and activities, that we haven't had time to jump into Max with a vengeance. Next week I am scheduled into an all day training on Max which includes some one-on-one time with the trainer, so I will feel more prepared to tackle that project. Rand is skeptical about it but he will cooperate as he always does. I'm afraid that he is getting comfortable with not being able to communicate well. All of us around him can interpret his needs and wants most of the time so his frustration level has dropped a bit.
Thuan helps Rand to get up from his bar chair on the alley.
There it goes - getting closer to a 300 game! Notice how Thuan's knee is supporting Rand's right knee to keep it straight and solid.
Rand just passed the second anniversary of his stroke. He remembered. He kept pointing to January 28th on the calendar and we talked about it. He remembered the paramedics, ICU, falling down at home, most of the morning. He does not remember much of the succeeding seven months. I was amazed that he remembered any of it - this is the first time. He also remembered Valentine's Day and gave me a Valentine. He is such a sweetheart!
Keep him close in your thoughts and prayers.
Love,
Connie
This week, I found an unused lounge chair near the bowling alley bar and got permission to bring it out onto the alley. Rand loved it - it was a bit lower than his wheelchair, it has no strange protrusions, it has arm rests to support him, nothing goes bump in the night and it is comfortable between shots! Below are some photos of this unique solution. It proved to be temporary as he needed the extra height that his electric wheelchair gives him and by the middle of the second game, he was back to his hotrod. But it was fun while it lasted! Not too many people can claim to have bowled from a bar lounge chair! Every week Rand bowls better and better. This week he had several spares and two strikes! He's enjoying himself and that's what counts.
We are in the third week of "The Puzzle From Hell" - a photo of dozens of beautiful, multi-colored butterflies, with no rhyme or reason to the top, bottom or sides. Several of us have been slaving over it and, along with Rand, should have it done in the next day or two. Then - a break from puzzles!! A friend gave Rand a beautiful set of wooden Tangrams for Christmas. The patterns are too small for him to deal with so she blew them up to fit the pieces, glued them to poster board and made several patterns that are the right size. That will be our next project. What a wonderful gift!
"Max," the speech generating device, is still sitting in the wings. We have been so busy with Rand's on-going participation in Recovering Function and other therapies and activities, that we haven't had time to jump into Max with a vengeance. Next week I am scheduled into an all day training on Max which includes some one-on-one time with the trainer, so I will feel more prepared to tackle that project. Rand is skeptical about it but he will cooperate as he always does. I'm afraid that he is getting comfortable with not being able to communicate well. All of us around him can interpret his needs and wants most of the time so his frustration level has dropped a bit.
Thuan helps Rand to get up from his bar chair on the alley.
There it goes - getting closer to a 300 game! Notice how Thuan's knee is supporting Rand's right knee to keep it straight and solid.
Rand just passed the second anniversary of his stroke. He remembered. He kept pointing to January 28th on the calendar and we talked about it. He remembered the paramedics, ICU, falling down at home, most of the morning. He does not remember much of the succeeding seven months. I was amazed that he remembered any of it - this is the first time. He also remembered Valentine's Day and gave me a Valentine. He is such a sweetheart!
Keep him close in your thoughts and prayers.
Love,
Connie
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