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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
Wednesday, December 05, 2007
Christmas, 2007
Merry Christmas, Happy Holidays and Happy New Year from us to you. This year has been amazing, filled with progress, challenges, new toys, frustrations, sadness, joy, visits from family and good friends from near and far. I won't go in to all of them as you can review the year's entries on this blog, but I am including some photographic highlights of 2007.
Last spring we started the months-long process of getting a speech generating device for Rand. It is still a work in progress but we are making headway. Love the bureaucracy of managed care! Uff da!
Rand can now walk for about 15 minutes with safety precautions in place but with minimal assistance. Here he is walking, in early December, with help from two therapists. He is not wearing his leg brace and is using a regular cane rather than the quad-point cane. He leans heavily on the cane but his sense of balance is good.
Rand continues to be a demonstration patient for the "Recovering Function" course, which is part of the national certification process for physical and occupational therapists. In this photo a candidate is working on his right shoulder. Notice that his hand is "paddled" to keep his hand and fingers from curling up. He is their star student!
Rand relearned to hit golf balls in the "Saving Strokes" program. The first session he hit very few balls as his balance and stamina were so poor. By the 8th session he was hitting golf balls like mad - his stamina and balance were awesome. Thuan's support was dangerous but critical!
Rand and friends break in one of the eight new "Rand Elness Honorary Handicapped Curbs" on Antigua Drive. Notice the champagne glasses - some of which was used to christen each new ramp! It is so wonderful to have those ramps, especially with the new power wheelchair, Rand can go zooming where ever he wants!
Rand had so many visitors this year - friends from Illinois and various parts of California, Connie's cousins from Norway, his brother from Minnesota, his sister and her husband from Wisconsin, and at Thanksgiving, our niece and her husband, also from Madison, WI. This photo is of Kiki and Michael with Rand and me during a Thanksgiving weekend visit to a local winery.
Last Christmas, my sister Annie and I went on a wonderful cruise to the Mexican Riviera with friends. She will be coming here for Christmas again this month. She and I also spent a week together in Puerto Vallarta, Mexico, in June. I'm not including photos of our hair braiding expedition, the jet ski escapade, or other adventures during those fun times! I also spent a week in Hawaii with my cousin and his wife and ten days in Minnesota visiting friends and family.
Another major highlight of 2007 was buying three new vehicles: a handicap-converted mini-van with automatic ramp for Rand, the electric wheelchair "hot rod" to give him some more independence, plus a bright red Toyota Prius mainly for me. Rand is so good at maneuvering the new wheelchair - he never ceases to amaze me!
Rand and I celebrated our 44th wedding anniversary in August - what a journey it has been. The highs have been fabulous, the lows devastating. As 2007 marched by, we had great joys, unexpected accomplishments and tearful depressions. Next month it will be two years since Rand's stroke and the two of us are still struggling with the realities of it all. Rand's progress in that time has been nothing short of miraculous and we celebrate that every day, yet every day we also have to deal the limitations, frustrations and memories of times past. But who knows - maybe we'll dance on our 45th anniversary!
Thank you for being there for us during another year. We truly appreciate your cards, calls, visits and good thoughts.
We wish you all the good things for the holidays and in 2008 -
HOPE, PEACE and COOKIES!
Love,
Rand and Connie
Last spring we started the months-long process of getting a speech generating device for Rand. It is still a work in progress but we are making headway. Love the bureaucracy of managed care! Uff da!
Rand can now walk for about 15 minutes with safety precautions in place but with minimal assistance. Here he is walking, in early December, with help from two therapists. He is not wearing his leg brace and is using a regular cane rather than the quad-point cane. He leans heavily on the cane but his sense of balance is good.
Rand continues to be a demonstration patient for the "Recovering Function" course, which is part of the national certification process for physical and occupational therapists. In this photo a candidate is working on his right shoulder. Notice that his hand is "paddled" to keep his hand and fingers from curling up. He is their star student!
Rand relearned to hit golf balls in the "Saving Strokes" program. The first session he hit very few balls as his balance and stamina were so poor. By the 8th session he was hitting golf balls like mad - his stamina and balance were awesome. Thuan's support was dangerous but critical!
Rand and friends break in one of the eight new "Rand Elness Honorary Handicapped Curbs" on Antigua Drive. Notice the champagne glasses - some of which was used to christen each new ramp! It is so wonderful to have those ramps, especially with the new power wheelchair, Rand can go zooming where ever he wants!
Rand had so many visitors this year - friends from Illinois and various parts of California, Connie's cousins from Norway, his brother from Minnesota, his sister and her husband from Wisconsin, and at Thanksgiving, our niece and her husband, also from Madison, WI. This photo is of Kiki and Michael with Rand and me during a Thanksgiving weekend visit to a local winery.
Last Christmas, my sister Annie and I went on a wonderful cruise to the Mexican Riviera with friends. She will be coming here for Christmas again this month. She and I also spent a week together in Puerto Vallarta, Mexico, in June. I'm not including photos of our hair braiding expedition, the jet ski escapade, or other adventures during those fun times! I also spent a week in Hawaii with my cousin and his wife and ten days in Minnesota visiting friends and family.
Another major highlight of 2007 was buying three new vehicles: a handicap-converted mini-van with automatic ramp for Rand, the electric wheelchair "hot rod" to give him some more independence, plus a bright red Toyota Prius mainly for me. Rand is so good at maneuvering the new wheelchair - he never ceases to amaze me!
Rand and I celebrated our 44th wedding anniversary in August - what a journey it has been. The highs have been fabulous, the lows devastating. As 2007 marched by, we had great joys, unexpected accomplishments and tearful depressions. Next month it will be two years since Rand's stroke and the two of us are still struggling with the realities of it all. Rand's progress in that time has been nothing short of miraculous and we celebrate that every day, yet every day we also have to deal the limitations, frustrations and memories of times past. But who knows - maybe we'll dance on our 45th anniversary!
Thank you for being there for us during another year. We truly appreciate your cards, calls, visits and good thoughts.
We wish you all the good things for the holidays and in 2008 -
HOPE, PEACE and COOKIES!
Love,
Rand and Connie
Saturday, November 03, 2007
A Huge Whoopie!!
For the last 1 1/2 years I have had a two car garage with one car in residence. As of yesterday, every time I open the garage door I am shocked to see it filled to the brim with two vehicles. Not only did I pick up Rand's electric wheelchair yesterday, I also brought home the handicapped conversion Chevy minivan. On top of that, the previous week I bought a bright red Toyota Prius for myself. Yikes! Remind me to NEVER, EVER again buy three vehicles in the same week - reading and digesting the manuals alone will kill you! Rand's electric wheelchair is stored in the garage at his house and I have yet to pick up the passenger's seat for the minivan and store it in our garage. Uff da. I see more garage cleaning ahead.
Below are photos of Rand's maiden voyage today in the minivan, "Opplevelse 2", also using his "hot rod" (electric wheelchair) for the first time. What a challenge it was for him but he rose to the occasion and did a stellar job! With Manny's support and guidance, he learned to back his electric wheelchair up the ramp and into the far corner of the minivan. Then he learned to pull forward, making a sharp left turn into the passenger's seat area, positioning himself precisely until the chair "clanged" into the lock position on the power lock mechanism installed on the floor. The power lock clamps onto a rod on the bottom of his wheelchair and holds him tightly in place. When we arrive at our destination, I push a button and Rand has about 3-4 seconds to back up when the lock releases with another "clang" and then start the process in reverse, backing into the corner and going down the ramp facing forward. I was really worried about Rand making this work, but with some practice, he did beautifully! Positioning himself exactly for the power lock to kick in is the problem right now, but Rand will learn to do it precisely, exactly and every time. After three practice runs this afternoon, Rand and I took off for the mall. He negotiated the aisles at Target, the corridors of the mall which were filled with families, strollers, toddlers, oblivious teenagers, walkers and wheelchairs, like a pro! I thought it would be best if I walked on his right side to deflect his running into/over people and things. After he ran that 300 pound electric wheelchair over my foot once, I changed my mind! Actually, on a busy day like today, it worked best for me to walk ahead of him and clear the way - to cut a swath through the crowd for him. When we got home, he was bushed - mentally exhausted from all the concentration, commotion, learning, independence as well as the effort required to negotiate the aisles, being assaulted by all the products, colors, sights, sounds, smells, people, all the things not contained in his normal cocooned world. I also learned that I need to get a bike flag for his chair so I can spot him - he tends to lose concentration, he stops in the most unlikely places and it is easy to lose him in a store or a crowd. We're learning.
All in all, I can't tell you what a relief it was today to not have to transfer Rand from wheelchair to car and back again, over and over. To not have to sling that wheelchair in and out of the back of the SUV was such a blessing. Actually, I think Rand misses it. With the old method, every time he stood up for a transfer, he gave me lots of hugs and kisses - now that he is sitting down and it doesn't work so well! Oh well, we can fix that, too. Practice, practice, practice!
Rand and Manny getting ready to assault the minivan, "Opplevelse 2", with his new hot rod.
Backing into "Oppie 2" with Manny's guidance. Manny's attempt to push the hot rod is futile as Rand controls it totally. The door opens and the ramp lowers automatically as Oppie 2 "kneels" to make it closer to the ground.
More practice backing up the ramp. It turns out that that was the easy part! I'm going to put red duct tape on the left edge of the ramp to make it easier for Rand to see/use that as a guide. I'll also add red tape to the power lock and to the dashboard to give him some targets to help align the wheelchair exactly.

Rand positioned in the far corner/side of the minivan, ready to negotiate the sharp turn into the passenger's area. His knees are strapped together with a wide velcro strap as his right leg flops to the side and there is nothing on the chair to hold it in place. There is danger of his leg and/or pant leg getting caught in the front wheel. He is wearing the arm sling as the armrests are so short that there is nothing to prop up that arm and it would dangle uselessly, dangerously and heavily at his side.
Success!! Randbo is in place, the lock is holding him securely and he's ready for an opplevelse!!
The minivan floor is lowered ten inches to accommodate the ramp, wheelchair and extra headroom that is needed. The driver's seat is sitting up on a platform so Rand and I are the same height, just as we would be in a regular car.
Whew - this has been a busy and intense two weeks, filled with so many uncertainties, lots of "hurry up and wait," questions upon questions, anxiety, nerves, frustration, financial headaches and finally the reality of Rand making it all work. WHOOPIE!!
Keep Rand close - a few months ago this day would not have been possible. Thanks so much for sticking with us on this amazing journey. The progress continues.
Love,
Connie
Below are photos of Rand's maiden voyage today in the minivan, "Opplevelse 2", also using his "hot rod" (electric wheelchair) for the first time. What a challenge it was for him but he rose to the occasion and did a stellar job! With Manny's support and guidance, he learned to back his electric wheelchair up the ramp and into the far corner of the minivan. Then he learned to pull forward, making a sharp left turn into the passenger's seat area, positioning himself precisely until the chair "clanged" into the lock position on the power lock mechanism installed on the floor. The power lock clamps onto a rod on the bottom of his wheelchair and holds him tightly in place. When we arrive at our destination, I push a button and Rand has about 3-4 seconds to back up when the lock releases with another "clang" and then start the process in reverse, backing into the corner and going down the ramp facing forward. I was really worried about Rand making this work, but with some practice, he did beautifully! Positioning himself exactly for the power lock to kick in is the problem right now, but Rand will learn to do it precisely, exactly and every time. After three practice runs this afternoon, Rand and I took off for the mall. He negotiated the aisles at Target, the corridors of the mall which were filled with families, strollers, toddlers, oblivious teenagers, walkers and wheelchairs, like a pro! I thought it would be best if I walked on his right side to deflect his running into/over people and things. After he ran that 300 pound electric wheelchair over my foot once, I changed my mind! Actually, on a busy day like today, it worked best for me to walk ahead of him and clear the way - to cut a swath through the crowd for him. When we got home, he was bushed - mentally exhausted from all the concentration, commotion, learning, independence as well as the effort required to negotiate the aisles, being assaulted by all the products, colors, sights, sounds, smells, people, all the things not contained in his normal cocooned world. I also learned that I need to get a bike flag for his chair so I can spot him - he tends to lose concentration, he stops in the most unlikely places and it is easy to lose him in a store or a crowd. We're learning.
All in all, I can't tell you what a relief it was today to not have to transfer Rand from wheelchair to car and back again, over and over. To not have to sling that wheelchair in and out of the back of the SUV was such a blessing. Actually, I think Rand misses it. With the old method, every time he stood up for a transfer, he gave me lots of hugs and kisses - now that he is sitting down and it doesn't work so well! Oh well, we can fix that, too. Practice, practice, practice!
Rand and Manny getting ready to assault the minivan, "Opplevelse 2", with his new hot rod.
Backing into "Oppie 2" with Manny's guidance. Manny's attempt to push the hot rod is futile as Rand controls it totally. The door opens and the ramp lowers automatically as Oppie 2 "kneels" to make it closer to the ground.
More practice backing up the ramp. It turns out that that was the easy part! I'm going to put red duct tape on the left edge of the ramp to make it easier for Rand to see/use that as a guide. I'll also add red tape to the power lock and to the dashboard to give him some targets to help align the wheelchair exactly.
Rand positioned in the far corner/side of the minivan, ready to negotiate the sharp turn into the passenger's area. His knees are strapped together with a wide velcro strap as his right leg flops to the side and there is nothing on the chair to hold it in place. There is danger of his leg and/or pant leg getting caught in the front wheel. He is wearing the arm sling as the armrests are so short that there is nothing to prop up that arm and it would dangle uselessly, dangerously and heavily at his side.
Success!! Randbo is in place, the lock is holding him securely and he's ready for an opplevelse!!
The minivan floor is lowered ten inches to accommodate the ramp, wheelchair and extra headroom that is needed. The driver's seat is sitting up on a platform so Rand and I are the same height, just as we would be in a regular car.
Whew - this has been a busy and intense two weeks, filled with so many uncertainties, lots of "hurry up and wait," questions upon questions, anxiety, nerves, frustration, financial headaches and finally the reality of Rand making it all work. WHOOPIE!!
Keep Rand close - a few months ago this day would not have been possible. Thanks so much for sticking with us on this amazing journey. The progress continues.
Love,
Connie
Sunday, October 21, 2007
Woes and Whoopies
WOE: If Halloween doesn't hurry up and get here, I will have eaten all the "Gummy Body Parts" that I bought for the trick or treaters on Halloween! Uff da.
WHOOPIE: Rand is doing well in the weight department, turning down sweets right and left. He hasn't lost any weight but he hasn't put any on in the last six months either.
WOE: Today I called the Durable Medical Equipment Department of Kaiser to find out the status of Rand's speech generating device. They'd never heard of it! Six weeks or more ago, his doctor signed it off and sent it on electronically. It got lost in cyberspace. !@#$%^&*()! It has now been retrieved and is on its way to the Regional Review Committee who will decide if it is "appropriate" for Rand or not - six months late!!
I can't find a Whoopie in that mess!
WHOOPIE: Last week I sent out pictures of Rand driving a rented electric wheelchair - a trial run. He did so well that today I bought one for him! It will be here at the end of next week. It is bright blue with beige upholstery to match the interior of the new minivan that I bought on Wednesday! To see the minivan conversion (floor lowered by 10 inches, electric ramp and doors, passenger seat removed and a power wheelchair locking system in place, kneeling feature, etc.) go to www.braunmobility.com To see Rand's new hot rod, go to www.pridemobility.com and look up the "Jazzy 600." The unconverted minivan can be found on www.chevrolet.com under "Uplander." By Halloween, Rand and I should be cruising all over the place with new found freedom! At some point I will probably sell the Murano and get a small run around car for myself.
WOE: None really, but $$$$ keep my head spinning!
WHOOPIE: My baby sister, Annie, had two stints put in her heart two weeks ago. Two of the three arteries were totally clogged, so bad that the surgeon had a hard time getting the stints into the arteries! The surgeon said she was one lucky lady to have that major problem discovered when she did, through a routine stress test. There are five members of my immediate family and four of them share 13 heart bypasses and/or stints. Yikes! I have a stress test scheduled for next week.
WOE: Hmmmmmmmm - I can't think of any more. Life is good.
Rand is doing so well in the next round of Saving Stokes golf lessons! He's hitting a five iron out there, straight, with a nice loft. Pretty, pretty shots - not long but pretty. Thuan has found the perfect crouching position to keep Rand in place yet allowing his body to move with his swing. By the last lesson, Rand should be driving himself to the tee in his new chair!! Pictures of the new vehicles will be included in the next epistle.
Keep Rand close.
Love,
Connie
WHOOPIE: Rand is doing well in the weight department, turning down sweets right and left. He hasn't lost any weight but he hasn't put any on in the last six months either.
WOE: Today I called the Durable Medical Equipment Department of Kaiser to find out the status of Rand's speech generating device. They'd never heard of it! Six weeks or more ago, his doctor signed it off and sent it on electronically. It got lost in cyberspace. !@#$%^&*()! It has now been retrieved and is on its way to the Regional Review Committee who will decide if it is "appropriate" for Rand or not - six months late!!
I can't find a Whoopie in that mess!
WHOOPIE: Last week I sent out pictures of Rand driving a rented electric wheelchair - a trial run. He did so well that today I bought one for him! It will be here at the end of next week. It is bright blue with beige upholstery to match the interior of the new minivan that I bought on Wednesday! To see the minivan conversion (floor lowered by 10 inches, electric ramp and doors, passenger seat removed and a power wheelchair locking system in place, kneeling feature, etc.) go to www.braunmobility.com To see Rand's new hot rod, go to www.pridemobility.com and look up the "Jazzy 600." The unconverted minivan can be found on www.chevrolet.com under "Uplander." By Halloween, Rand and I should be cruising all over the place with new found freedom! At some point I will probably sell the Murano and get a small run around car for myself.
WOE: None really, but $$$$ keep my head spinning!
WHOOPIE: My baby sister, Annie, had two stints put in her heart two weeks ago. Two of the three arteries were totally clogged, so bad that the surgeon had a hard time getting the stints into the arteries! The surgeon said she was one lucky lady to have that major problem discovered when she did, through a routine stress test. There are five members of my immediate family and four of them share 13 heart bypasses and/or stints. Yikes! I have a stress test scheduled for next week.
WOE: Hmmmmmmmm - I can't think of any more. Life is good.
Rand is doing so well in the next round of Saving Stokes golf lessons! He's hitting a five iron out there, straight, with a nice loft. Pretty, pretty shots - not long but pretty. Thuan has found the perfect crouching position to keep Rand in place yet allowing his body to move with his swing. By the last lesson, Rand should be driving himself to the tee in his new chair!! Pictures of the new vehicles will be included in the next epistle.
Keep Rand close.
Love,
Connie
Thursday, October 11, 2007
October 11, 2007
For several months I have been looking for an electric wheelchair for Rand with the idea that we would then get a minivan converted for handicapped use and my days of slinging a wheelchair in and out of the SUV would be over while I was still in one piece. I knew that Rand could not operate a traditional electric wheelchair due to his limited spatial awareness, 50% blindness in both eyes, inability to attend to a task, to focus and to be aware of safety issues. My wheelchair search focused on one with "attendant controls", in other words, one with controls in the back of the chair that another person or I could operate. To make a long search story short, the only ones available are special order versions that cost in the $10,000 range! Out of sheer frustration last week, I started talking to myself about who on earth the expert was that said Rand couldn't handle a traditional electric wheelchair. It was me. And what do I know? The answer is NOTHING! So today I went to a store and rented a regular electric wheelchair for Rand for a week to see how it would work. Guess what??
RAND CAN DRIVE! RAND CAN OPERATE AN ELECTRIC WHEELCHAIR WITH EASE AND A GREAT DEAL OF SAFETY!! HE'S GOOD! HE LIKES IT!! WHOOOOOPIE!!! AND HERE'S PROOF!!
Out cruising the street
A stop at a friend's house
Catching up on the news at home - the wheelchair fits his room space perfectly!
I am so thrilled!! We practiced inside the house for awhile first and then took it out on Antigua Drive. Rand navigated like a pro. He went up and down the ramp, over obstacles on the sidewalk, around things, out on the street, learned how to regulate the speed and even how to use the weenie horn! I think he even surprised himself! He was amazed at how easily this chair goes over bumps, thresholds, and other things that make a regular wheelchair quake. I am ashamed of myself for doubting Rand's current abilities. On the other hand, it wasn't that long ago that my assessment was right, but he has come a long way in the last couple of months and I just hadn't understood how much progress he has made. I think we are home free and well on our way to being more independent. Just think, last Tuesday for the Saving Strokes golf program, I had to transfer Rand eight times in two hours. With this set up that number would be zero! That saves Rand a lot of grief and saves me a lot of wear and tear on my back and shoulders.
This is not the chair we will end up with. This chair is a rental, it is too low for him, and we need one that is a perfect fit - and has a decent horn! His arm rest doesn't work on this chair so we have to address that issue also. But there is a lot to like about this chair brand and it will take more research to find just the right combination for Rand. I hope I can accomplish that in short order and then we can move on to the minivan search. The next big decision is whether we buy new or used vehicles. There are pros and cons both ways.
Stay tuned - this is a huge milestone for Rand. I truly never thought I would see this day. I'm so happy I could cry!!
Keep Rand close.
Love,
Connie
RAND CAN DRIVE! RAND CAN OPERATE AN ELECTRIC WHEELCHAIR WITH EASE AND A GREAT DEAL OF SAFETY!! HE'S GOOD! HE LIKES IT!! WHOOOOOPIE!!! AND HERE'S PROOF!!
Out cruising the street
A stop at a friend's house
Catching up on the news at home - the wheelchair fits his room space perfectly!
I am so thrilled!! We practiced inside the house for awhile first and then took it out on Antigua Drive. Rand navigated like a pro. He went up and down the ramp, over obstacles on the sidewalk, around things, out on the street, learned how to regulate the speed and even how to use the weenie horn! I think he even surprised himself! He was amazed at how easily this chair goes over bumps, thresholds, and other things that make a regular wheelchair quake. I am ashamed of myself for doubting Rand's current abilities. On the other hand, it wasn't that long ago that my assessment was right, but he has come a long way in the last couple of months and I just hadn't understood how much progress he has made. I think we are home free and well on our way to being more independent. Just think, last Tuesday for the Saving Strokes golf program, I had to transfer Rand eight times in two hours. With this set up that number would be zero! That saves Rand a lot of grief and saves me a lot of wear and tear on my back and shoulders.
This is not the chair we will end up with. This chair is a rental, it is too low for him, and we need one that is a perfect fit - and has a decent horn! His arm rest doesn't work on this chair so we have to address that issue also. But there is a lot to like about this chair brand and it will take more research to find just the right combination for Rand. I hope I can accomplish that in short order and then we can move on to the minivan search. The next big decision is whether we buy new or used vehicles. There are pros and cons both ways.
Stay tuned - this is a huge milestone for Rand. I truly never thought I would see this day. I'm so happy I could cry!!
Keep Rand close.
Love,
Connie
Monday, October 01, 2007
October 1, 2007
As we slide into fall and Christmas decorations abound, it is time for another update on Rand. All is well and he is as busy as ever. He has occupational and physical therapy twice a month now, as an out-patient at the hospital, down from once a week. I suspect that may end totally before the year is out as he has plateaued physically and Medicare isn't seeing the progress they want in order to keep the therapy going. As I understand it, PT and OT usually continue for six months or so and Rand has had nineteen months, plus the intensive month in Vallejo over a year ago. That tells you something about the tremendous progress he has made. Thuan sees him six days a week as usual, which keeps him limber, active and moving ahead. His new articulated leg/foot brace has also had an impact as he can now bend his right knee and ankle - a real plus when trying to walk.
Rand completed the "Saving Strokes" golf clinic two weeks ago and made so much progress in balance, confidence, accuracy and stamina. Lo and behold, he has been accepted into the program again and starts the next round on October 9, every week for four weeks! He grinned from ear to ear when I told him today! However, I haven't told Thuan yet - I hope he is as enthusiastic! Uff da.
Rand's blood thinning meds continue to be monitored every two weeks and adjusted as necessary. His blood thickness never stays constant - it fluctuates all the time and is hard to pin down. I keep hoping that they will find the magic formula and it will stabilize. Three weeks ago Rand had an nasty neurological episode when we were at the hospital, about to go in for a blood draw. He has these bouts often but not as tough and hard as this one was. He was nauseated, had chills and was gripped in pain. A "Code 44" went out over the speaker system and within seconds Rand was surrounded by nurses, technicians, LVNs, even security! He was embarrassed as the event had passed by that time. He saw the doctor, was declared fit as a fiddle and we went home. Whew!
His wonderful attitude and contentment continue to be a comfort to both of us. I don't know what I would do if he became unhappy and disillusioned with his situation. I still haven't given up on the idea that he may be able to come home to live some day, but in my brain I know that won't happen. In my heart I keep hoping that he will continue to recover sufficiently to make that a possibility.
Last night I returned from a ten day trip to Minnesota with stops in Fargo, North Dakota; my hometown of Owatonna, and in Minneapolis. I also took a day trip to see one of my college roommates whom I haven't seen in 35 years. What a joy that was! We talked like we hadn't seen each other since last week! I also saw two more of my college roomies and a bunch of my high school friends - some of whom I haven't seen in well over 40 years! Wheeeee! I wouldn't have missed that "girl's only" luncheon in Minneapolis for the world! What a great time we had. I also had a good time with my sister, aunt and uncle and made some goodly contributions to the Minnesota economy. Rand understood that he would have been bored to tears on this "girl's trip" so he was very happy to let me go alone. It was a grand adventure for me and I got a glorious welcome home today.
The next big project is to find an electric wheelchair for Rand with the controls in the back for me. So far I haven't had any luck. It looks like I might have to buy a regular electric wheelchair and have the controls moved/modified. Rand can not operate an electric chair safely as his vision, perception, danger zone sensibilities no longer function properly. He would be a danger to himself and others in a chair like that. I am coming to grips with the fact that I can't keep slinging that transport chair in and out of the back of the SUV without endangering myself. Even pushing Rand in his standard chair up and down ramps is becoming a real challenge for me as the whole package weighs about 300 pounds. So far, the best solution as I see it, is to get a minivan, modified with a ramp, kneeling capacity, lowered floor, safety locks for the chair in place of the passenger's seat, and the electric chair to go up and down the ramp and all around the town with ease. Rand agrees. Just getting me to accept that a minivan is the answer is a big step! I wanted a better solution but I guess this is it. If you know of anyone who has a rear-controlled power chair, please put them in touch with me as I have run up against an brick wall. The minivan is the easy part of this puzzle.
Speaking of puzzles, Rand has completed dozens of 200-300 piece puzzles and I've glued each one together. They are proudly stacked in his room and his puzzle supply is down to rock bottom. I asked if he wanted me to find more puzzles for him and he said no - I think he has had his fill! I wonder how he would like water colors, with an easel, drop cloth, etc. Any other ideas for him?
The speech generating device was approved in September by the insurance company - Wheeeeee! That means that they will pay for 80% of the cost including the wheelchair mounting. That is huge!! I haven't heard anything more about it, so I suppose the paper work is slowly grinding its way through channels. Pretty soon I will start hounding them to find out where everything stands. I'm anxious to get my hands on it and start the programming and training process.
Speaking of training, I have taken on five teacher interns this semester, coaching them through the first months of their careers. It is a challenge to say the least. One has already resigned and I'm concerned about at least one more. I have agreed to work with them this semester - we'll see how it goes and if I can or want to stay with it longer. Parts of it are fun but parts are an awful lot like work!
All is well. Rand is as handsome and sweet as ever. Please keep him close in your thoughts and prayers. Do stop by to see him - he loves to go for a walk and to show off the eight "Rand Elness Honorary Handicapped Curbs" on Antigua Drive! Keep those cards and letters coming.
Love,
Connie
Rand completed the "Saving Strokes" golf clinic two weeks ago and made so much progress in balance, confidence, accuracy and stamina. Lo and behold, he has been accepted into the program again and starts the next round on October 9, every week for four weeks! He grinned from ear to ear when I told him today! However, I haven't told Thuan yet - I hope he is as enthusiastic! Uff da.
Rand's blood thinning meds continue to be monitored every two weeks and adjusted as necessary. His blood thickness never stays constant - it fluctuates all the time and is hard to pin down. I keep hoping that they will find the magic formula and it will stabilize. Three weeks ago Rand had an nasty neurological episode when we were at the hospital, about to go in for a blood draw. He has these bouts often but not as tough and hard as this one was. He was nauseated, had chills and was gripped in pain. A "Code 44" went out over the speaker system and within seconds Rand was surrounded by nurses, technicians, LVNs, even security! He was embarrassed as the event had passed by that time. He saw the doctor, was declared fit as a fiddle and we went home. Whew!
His wonderful attitude and contentment continue to be a comfort to both of us. I don't know what I would do if he became unhappy and disillusioned with his situation. I still haven't given up on the idea that he may be able to come home to live some day, but in my brain I know that won't happen. In my heart I keep hoping that he will continue to recover sufficiently to make that a possibility.
Last night I returned from a ten day trip to Minnesota with stops in Fargo, North Dakota; my hometown of Owatonna, and in Minneapolis. I also took a day trip to see one of my college roommates whom I haven't seen in 35 years. What a joy that was! We talked like we hadn't seen each other since last week! I also saw two more of my college roomies and a bunch of my high school friends - some of whom I haven't seen in well over 40 years! Wheeeee! I wouldn't have missed that "girl's only" luncheon in Minneapolis for the world! What a great time we had. I also had a good time with my sister, aunt and uncle and made some goodly contributions to the Minnesota economy. Rand understood that he would have been bored to tears on this "girl's trip" so he was very happy to let me go alone. It was a grand adventure for me and I got a glorious welcome home today.
The next big project is to find an electric wheelchair for Rand with the controls in the back for me. So far I haven't had any luck. It looks like I might have to buy a regular electric wheelchair and have the controls moved/modified. Rand can not operate an electric chair safely as his vision, perception, danger zone sensibilities no longer function properly. He would be a danger to himself and others in a chair like that. I am coming to grips with the fact that I can't keep slinging that transport chair in and out of the back of the SUV without endangering myself. Even pushing Rand in his standard chair up and down ramps is becoming a real challenge for me as the whole package weighs about 300 pounds. So far, the best solution as I see it, is to get a minivan, modified with a ramp, kneeling capacity, lowered floor, safety locks for the chair in place of the passenger's seat, and the electric chair to go up and down the ramp and all around the town with ease. Rand agrees. Just getting me to accept that a minivan is the answer is a big step! I wanted a better solution but I guess this is it. If you know of anyone who has a rear-controlled power chair, please put them in touch with me as I have run up against an brick wall. The minivan is the easy part of this puzzle.
Speaking of puzzles, Rand has completed dozens of 200-300 piece puzzles and I've glued each one together. They are proudly stacked in his room and his puzzle supply is down to rock bottom. I asked if he wanted me to find more puzzles for him and he said no - I think he has had his fill! I wonder how he would like water colors, with an easel, drop cloth, etc. Any other ideas for him?
The speech generating device was approved in September by the insurance company - Wheeeeee! That means that they will pay for 80% of the cost including the wheelchair mounting. That is huge!! I haven't heard anything more about it, so I suppose the paper work is slowly grinding its way through channels. Pretty soon I will start hounding them to find out where everything stands. I'm anxious to get my hands on it and start the programming and training process.
Speaking of training, I have taken on five teacher interns this semester, coaching them through the first months of their careers. It is a challenge to say the least. One has already resigned and I'm concerned about at least one more. I have agreed to work with them this semester - we'll see how it goes and if I can or want to stay with it longer. Parts of it are fun but parts are an awful lot like work!
All is well. Rand is as handsome and sweet as ever. Please keep him close in your thoughts and prayers. Do stop by to see him - he loves to go for a walk and to show off the eight "Rand Elness Honorary Handicapped Curbs" on Antigua Drive! Keep those cards and letters coming.
Love,
Connie
Sunday, September 09, 2007
Rand at the Beginning of September, 2007
August was a busy month for both of us. Rand got a new recliner (blue of course) that is better in so many ways. It is electric and the back and foot rest operate independently of each other. That eliminates the foot stool and another piece of furniture he has to navigate around as well as gives him more independence and control of a part of his life. You have seen pictures of Rand in the "Saving Strokes" program. That has been so good for him even though he is very hard on himself. The final golf lesson is next Tuesday and is followed by a lunch. His PT and OT sessions continue every other week and the music therapist will begin again as soon as the golf program is ended. Thuan continues to work with Rand six days a week.
We also had company in August in the form of good, old friends from Southern Calif. We haven't seen each other in too long a time and had such fun together.
Rand also had a sprained foot from some near falls in PT, twisting his foot as he began to go down. The doctor confirmed that there was nothing broken or fractured, just a bad sprain. All is well now. Rand also got a new brace for his right leg/foot. This one is articulated and allows him to bend his knee and ankle for the first time since his stroke. We can already see a difference in his gait. He is able to "walk" more normally again after having his leg/foot in a rigid brace since his stroke. Nice!!
Last winter I wrote a letter to our City Council person asking how it was possible for the City of San Jose to permit the establishment of an assisted living home on Antigua Dr. for six mobility impaired adults and not provide the handicapped curbs required by Federal law. I got a visit from the City Engineer telling me that I was right and the curbs would be installed in 2007. They are done!! The "Rand Elness Honorary Curbs" are about to be broken in by Rand himself sometime this week and we will celebrate with champagne! Whoopie!
Last week the excitement around here was that a 10-12 inch alligator lizard took up residence in the kitchen, between the cabinets. It stayed for three days and I didn't know how to get rid of it. FInally it came out into the open and I was able to "escort" it out the door with some help from a magazine. Yuck! They are very snake-like in their appearance - way too much for me!! Uff da.
I may be out of my mind, but I have taken on five intern teachers as their coach/mentor for the semester. We are just getting acquainted and I start with observations on Monday. It could be fun and rewarding, it could also be that I am out of my mind!!
Yesterday I started a weekly exercise class based on the Feldenkrais method. Very interesting - unlike any class I have taken in the past. I felt good when I left. I am doing well on my resolve to take a trip once a month, even for a day, just to get out of town. Last week a friend and I went to San Francisco to see "Jersey Boys." Run, do not walk, to get tickets when it comes to your area. I just loved it! We stayed overnight in SF, ate wonderful meals, rode the cable cars hanging on the outside, had Irish Coffee at the Buena Vista, a night cap at the top of Sir Francis Drake, did all the touristy stuff and had a great time. At the end of Sept. I will be going to Minnesota to see family and friends for ten days. I'm really looking forward to that trip. It is getting easier for me to leave Rand and I think it is easier for Rand to see me go. He is always so sad, but I think he understands, probably doesn't miss me much once I leave and always welcomes me home with open arms. I have monthly "get-aways" planned through the end of February.
The speech generating device for Rand continues to be a work in progress. It seems to have dragged on forever. We were supposed to have the big meeting last week but it was canceled at the last minute. I hope, hope, hope, that it is rescheduled ASAP. Interestingly enough, the SLP that I had a run in with last winter is the one who makes the decision about recommending the device for Rand!! Uff da. Her comments still rankle my hide but I hope they don't color her judgement. I'll keep you posted.
Keep Rand close in your hearts and prayers.
Love,
Connie
We also had company in August in the form of good, old friends from Southern Calif. We haven't seen each other in too long a time and had such fun together.
Rand also had a sprained foot from some near falls in PT, twisting his foot as he began to go down. The doctor confirmed that there was nothing broken or fractured, just a bad sprain. All is well now. Rand also got a new brace for his right leg/foot. This one is articulated and allows him to bend his knee and ankle for the first time since his stroke. We can already see a difference in his gait. He is able to "walk" more normally again after having his leg/foot in a rigid brace since his stroke. Nice!!
Last winter I wrote a letter to our City Council person asking how it was possible for the City of San Jose to permit the establishment of an assisted living home on Antigua Dr. for six mobility impaired adults and not provide the handicapped curbs required by Federal law. I got a visit from the City Engineer telling me that I was right and the curbs would be installed in 2007. They are done!! The "Rand Elness Honorary Curbs" are about to be broken in by Rand himself sometime this week and we will celebrate with champagne! Whoopie!
Last week the excitement around here was that a 10-12 inch alligator lizard took up residence in the kitchen, between the cabinets. It stayed for three days and I didn't know how to get rid of it. FInally it came out into the open and I was able to "escort" it out the door with some help from a magazine. Yuck! They are very snake-like in their appearance - way too much for me!! Uff da.
I may be out of my mind, but I have taken on five intern teachers as their coach/mentor for the semester. We are just getting acquainted and I start with observations on Monday. It could be fun and rewarding, it could also be that I am out of my mind!!
Yesterday I started a weekly exercise class based on the Feldenkrais method. Very interesting - unlike any class I have taken in the past. I felt good when I left. I am doing well on my resolve to take a trip once a month, even for a day, just to get out of town. Last week a friend and I went to San Francisco to see "Jersey Boys." Run, do not walk, to get tickets when it comes to your area. I just loved it! We stayed overnight in SF, ate wonderful meals, rode the cable cars hanging on the outside, had Irish Coffee at the Buena Vista, a night cap at the top of Sir Francis Drake, did all the touristy stuff and had a great time. At the end of Sept. I will be going to Minnesota to see family and friends for ten days. I'm really looking forward to that trip. It is getting easier for me to leave Rand and I think it is easier for Rand to see me go. He is always so sad, but I think he understands, probably doesn't miss me much once I leave and always welcomes me home with open arms. I have monthly "get-aways" planned through the end of February.
The speech generating device for Rand continues to be a work in progress. It seems to have dragged on forever. We were supposed to have the big meeting last week but it was canceled at the last minute. I hope, hope, hope, that it is rescheduled ASAP. Interestingly enough, the SLP that I had a run in with last winter is the one who makes the decision about recommending the device for Rand!! Uff da. Her comments still rankle my hide but I hope they don't color her judgement. I'll keep you posted.
Keep Rand close in your hearts and prayers.
Love,
Connie
Tuesday, August 28, 2007
"Saving Strokes"
Today Rand had his second golf lesson. Last week he had so much trouble with balance that he rarely hit the ball. Today he hit a ton of balls - some were pretty good shots. It was hot already this morning so he rested frequently, drank lots of water and was slathered in sun screen. Having him hit balls at the driving range is a two person job. Thuan steadies/holds Rand and watches out for his own head while I tee up the ball, make sure his club face is on the correct side of the ball, help with positioning the club (he was using a 6 iron today) and act as the major cheerleader and gofer. The pictures below show Rand in various stages of his swing, Thuan trying to hold him up and still duck for cover, the Pro working with him and Thuan and the PT helping him into the cart at the end of the session.
Rand is very hard on himself and I'm not sure he really enjoys it liked I hoped. His frustration level was high - hitting a golf ball for the first time in almost two years and left handed to boot is tough. He was very critical of himself. Maybe next week he'll feel better about it. I still think it is a wonderful program and I'm so glad he is involved!
Keep Rand close.
Love,
Connie
Rand is very hard on himself and I'm not sure he really enjoys it liked I hoped. His frustration level was high - hitting a golf ball for the first time in almost two years and left handed to boot is tough. He was very critical of himself. Maybe next week he'll feel better about it. I still think it is a wonderful program and I'm so glad he is involved!
Keep Rand close.
Love,
Connie
Wednesday, August 15, 2007
Rand in mid-August
The most exciting thing happened today - I got the call saying that next Tuesday Rand starts taking golf lessons! He is going to participate in a golf program sponsored by the American Stroke Association called "Saving Strokes." How's that for a clever name? Golf courses around the area donate space, the golf pros donate their time and a limited number of pre-stroke golfers get involved in the game again! Rand is happy, happy, happy! When I told him that I was going to get him involved in this program last spring, he poo-pooed the whole thing. What me golf again? No way. Today when I told him the lessons are about to start, he grinned from ear to ear! He will learn to swing left-handed and from a wheelchair, but it is a start. After the lessons are over (it is a series of four) there is a golf tournament for all the Saving Strokes participants. The most amazing thing is that the coordinator of that tournament is the only student Rand and I both taught in our combined years of teaching! I had her in second grade and Rand had her for history in middle school. Small world! She and I had a good talk recently. Amazing!
Rand will never truly walk again like he used to, but he is getting so much better at walking the way he can now. He uses a quad-cane and has to have at least one person with him to keep him balanced and safe, but in that way he can walk across a room and back. Last week he was molded for a new leg/foot brace - this one will be articulated which should help his gait so much. The brace he has now is solid and rigid - there is no give to it at all. The new one will have an ankle joint so his ankle can bend with each step. What an improvement that will be! The therapists and I are so anxious to see his reaction and how it impacts his walking. The brace will be ready in another week or so. He is also going to get new socks made just for wearing with a brace.
In another week or so Rand will be getting his new recliner/lounge chair. It is electric, with a much higher seat than the current one so he can get in and out of it easier. The back and built-in foot rest operate via electric controls and independently of each other so he can move his feet and legs by himself and not be stuck until someone can do it for him. It also eliminates the separate footstool which has become a pain as Rand becomes more able to move around his room on his own. It will be one less obstacle for him to contend with in the room. I'm excited!
Last weekend Rand and I celebrated our 44th wedding anniversary! We had some friends over for champagne and cake and we had a good time. With Manny's help, Rand made me a special anniversary card that made me cry. He is so sweet - no wonder we made it together this long!
Rand continues to do well - he's healthy, content, has a positive attitude and is knee deep in 100-300 piece puzzles. Right now, there is something wrong with his right foot. We don't know what happened, but as Manny said, it is wonderful that Rand can feel that it hurts and can tell us where it hurts. Until recently that was not possible. We'll keep a close eye on it. Rand has plateaued in many areas - his occupational therapy will end next month and I fear that the physical therapy will be close behind. Those therapies end when the therapists can't continue to document significant gains for Medicare. He just completed another eight consecutive days as a demo patient for Recovering Function and is scheduled to return in November and again in February. I hope the speech generating device will culminate at the end of this month and that the wheels will start spinning again. Despite his iron will power, he has not lost any weight. But he hasn't gained any either and that's good.
Keep those cards and letters coming - Rand loves every one. Please stop by for a visit - he loves that even more!
Keep him close in your thoughts and prayers.
Love.
Connie
Rand will never truly walk again like he used to, but he is getting so much better at walking the way he can now. He uses a quad-cane and has to have at least one person with him to keep him balanced and safe, but in that way he can walk across a room and back. Last week he was molded for a new leg/foot brace - this one will be articulated which should help his gait so much. The brace he has now is solid and rigid - there is no give to it at all. The new one will have an ankle joint so his ankle can bend with each step. What an improvement that will be! The therapists and I are so anxious to see his reaction and how it impacts his walking. The brace will be ready in another week or so. He is also going to get new socks made just for wearing with a brace.
In another week or so Rand will be getting his new recliner/lounge chair. It is electric, with a much higher seat than the current one so he can get in and out of it easier. The back and built-in foot rest operate via electric controls and independently of each other so he can move his feet and legs by himself and not be stuck until someone can do it for him. It also eliminates the separate footstool which has become a pain as Rand becomes more able to move around his room on his own. It will be one less obstacle for him to contend with in the room. I'm excited!
Last weekend Rand and I celebrated our 44th wedding anniversary! We had some friends over for champagne and cake and we had a good time. With Manny's help, Rand made me a special anniversary card that made me cry. He is so sweet - no wonder we made it together this long!
Rand continues to do well - he's healthy, content, has a positive attitude and is knee deep in 100-300 piece puzzles. Right now, there is something wrong with his right foot. We don't know what happened, but as Manny said, it is wonderful that Rand can feel that it hurts and can tell us where it hurts. Until recently that was not possible. We'll keep a close eye on it. Rand has plateaued in many areas - his occupational therapy will end next month and I fear that the physical therapy will be close behind. Those therapies end when the therapists can't continue to document significant gains for Medicare. He just completed another eight consecutive days as a demo patient for Recovering Function and is scheduled to return in November and again in February. I hope the speech generating device will culminate at the end of this month and that the wheels will start spinning again. Despite his iron will power, he has not lost any weight. But he hasn't gained any either and that's good.
Keep those cards and letters coming - Rand loves every one. Please stop by for a visit - he loves that even more!
Keep him close in your thoughts and prayers.
Love.
Connie
Monday, July 30, 2007
End of July Update
As the calendar turns once again and Back to School sales are in full swing, it is time to give you an update on Rand. In a nutshell, all is well: his blood viscosity is right on the nose, he's healthy as a horse and has been very good about healthy eating. He will be weighed next week so we can see if there is any weight loss. He is a puzzle maniac and has a stack of glued puzzles completed. A friend made a great suggestion and some of the puzzles are now under plastic and used as placemats at the dining table! The other residents get a kick out of seeing which one they get on any given day. He can complete 300 piece puzzles with a lot of help. One to two hundred pieces are best. I think I've bought every one on eBay!
His physical therapy continues twice a month. He is now walking an obstacle course each time - on uneven surfaces, stepping over objects, stepping up onto platforms and down the other side, using both legs alternately to stay balanced and having to use his sense of distance, logic and experience to get from point A to point B. The obstacle course is set up between the parallel bars so sometimes Rand uses that to support himself and sometimes he uses his quad cane. His walking has improved so much in the last couple of months! In occupational therapy he is required to put a lot of pressure on his right hand/arm. We can see some movement in his right bicep and feel some strength in his lower arm, too, when he does that. The therapist has him using his left arm to do tasks while balancing himself on the right. I'm not sure he really realizes how much weight he is supporting with his right side. Either way, he has come so, so far!! Thuan continues to work with him every day. Every Tuesday morning, Emily, the music therapist works with him for an hour. Rand loves it! Rand continues to be the prize demo patient for Recovering Function so gets a double dose of excellent therapy frequently. He is in the middle of another two hour session every day for eight consecutive days.
Today we met with Jennie, the Speech/Language Pathologist, about the speech generating device we called Mo. Her life has been chaotic the last few months plus she has changed jobs, so little has been done about the grant. I think we are back on track and I hope we can submit the paperwork by the end of August. She will not be working with Rand as a speech therapist any more but she will stay with us through the grant process and on into the training phase. So much time has passed since Mo was around that it is hard to assess where Rand is with the whole notion. Jennie is now in the administrative end of the outpatient treatment program so will no longer be seeing clients. We were lucky to have had her when we did.
Friends from another part of Calif. visited us a couple of weeks ago. It was such fun to have them here. Another couple from So. Calif. will be visiting near the end of August. It has been years since we've seen them also, so it will be great to have them here.
Recently, the husband of a former colleague who now lives near Phoenix, died suddenly and unexpectedly. She asked a couple of us to spend a few days with her. It was a tough time, a fun time, a nostalgic time. There were lots of tears, laughs, serious talks, plus some shopping, plenty of time in the pool. It was a healing time for me, maybe more so than for her. I heard myself in many of her comments, laments, and wishful thinking. Meg told me to use her as a gage of how far I have come. Boy, oh, boy - I have come a long, long way in the last eighteen months. I'm proud of myself and how I have gotten through this life changing event. I still have a long ways to go, but I think I'm doing well.
In about two weeks, Rand and I will celebrate our 44th wedding anniversary! I hope we can do something special that day.
Keep Rand close.
Love,
Connie
His physical therapy continues twice a month. He is now walking an obstacle course each time - on uneven surfaces, stepping over objects, stepping up onto platforms and down the other side, using both legs alternately to stay balanced and having to use his sense of distance, logic and experience to get from point A to point B. The obstacle course is set up between the parallel bars so sometimes Rand uses that to support himself and sometimes he uses his quad cane. His walking has improved so much in the last couple of months! In occupational therapy he is required to put a lot of pressure on his right hand/arm. We can see some movement in his right bicep and feel some strength in his lower arm, too, when he does that. The therapist has him using his left arm to do tasks while balancing himself on the right. I'm not sure he really realizes how much weight he is supporting with his right side. Either way, he has come so, so far!! Thuan continues to work with him every day. Every Tuesday morning, Emily, the music therapist works with him for an hour. Rand loves it! Rand continues to be the prize demo patient for Recovering Function so gets a double dose of excellent therapy frequently. He is in the middle of another two hour session every day for eight consecutive days.
Today we met with Jennie, the Speech/Language Pathologist, about the speech generating device we called Mo. Her life has been chaotic the last few months plus she has changed jobs, so little has been done about the grant. I think we are back on track and I hope we can submit the paperwork by the end of August. She will not be working with Rand as a speech therapist any more but she will stay with us through the grant process and on into the training phase. So much time has passed since Mo was around that it is hard to assess where Rand is with the whole notion. Jennie is now in the administrative end of the outpatient treatment program so will no longer be seeing clients. We were lucky to have had her when we did.
Friends from another part of Calif. visited us a couple of weeks ago. It was such fun to have them here. Another couple from So. Calif. will be visiting near the end of August. It has been years since we've seen them also, so it will be great to have them here.
Recently, the husband of a former colleague who now lives near Phoenix, died suddenly and unexpectedly. She asked a couple of us to spend a few days with her. It was a tough time, a fun time, a nostalgic time. There were lots of tears, laughs, serious talks, plus some shopping, plenty of time in the pool. It was a healing time for me, maybe more so than for her. I heard myself in many of her comments, laments, and wishful thinking. Meg told me to use her as a gage of how far I have come. Boy, oh, boy - I have come a long, long way in the last eighteen months. I'm proud of myself and how I have gotten through this life changing event. I still have a long ways to go, but I think I'm doing well.
In about two weeks, Rand and I will celebrate our 44th wedding anniversary! I hope we can do something special that day.
Keep Rand close.
Love,
Connie
Sunday, July 15, 2007
First Half of July
This is a summary of the first half of the month of July. I know that I said I would put the Epistle on hold for the time being, but so many little things are going on that I decided to write an update.
Rand has been doing puzzles galore! He wants each one glued, not returned to the box. There are stacks in his room and I don't know what to do with them as there is no place to display them - now what!?
Thuan became a US Citizen on July 5 and wore Rand's red, white and blue jacket on the big day. Rand was so happy and proud of him!
July 14, Bastille Day, marked one year since Rand left the hospital for good. He came "home" that day to the rainbow/Randbo banner from the Fisher School group and took up residence on Antigua Dr. on July 14, 2006. Last night, returning from an outing with friends, I asked him if he wanted to come home for dessert. He said no. That was the first time ever that he has turned down an opportunity to come to the house. I guess the transition to his new home is complete - this is no longer home to him. I hate that.
He's watching his weight with that enormous will-power of his. He chooses fresh fruit over candy, cookies and goodies every time. I haven't seen a drop in pounds yet, but that will come. His blood test results are the envy of all of us - cholesterol, triglycerides, etc. numbers are perfect. His blood viscosity is still variable and the coumadin is adjusted every two weeks.
Rand's becoming a good solitaire player - when I'm there. He won't try it on his own yet. He misses some moves and doesn't see all the possibilities.
I've ordered a new lounge chair for him. It is electric with separate controls for the back and the foot rest as well as a seat lift. It is made by Zero Gravity and, again it is in blue. The company is changing the controls to the left side for Rand so it should be here by Labor Day. I think it will solve several problems that the current one creates such as being too low to get in and out of easily, letting him raise and lower his legs independently without waiting for help and eliminating the separate foot stool- another piece of furniture that gets in his way. I am concerned about the electric seat lift as I see it as a safety issue - Rand doesn't know when to stop and I fear that he will go head over teacup as that feature catapults him up and out of the chair. I'll have to figure something out. His chair from home worked well until recently, but now he can transfer much easier except that he sits so low in the chair. When he needed two people to help him stand up from the chair, it wasn't a problem. Now it is.
We had company for a few days. They are old friends and Rand loved seeing them and every minute spent with them. While they were here we called another couple that we used to run around with and had a fun, funny six-way conversation. The photo below was taken during that phone call. You can see how Rand enjoyed hearing their voices and laughing at old memories!
This week Rand was a demo patient for Recovering Function - he was the only one and the instructor worked on him in front of the class. Later this month he will again be a demo patient for Recovering Function for eight days. We are so fortunate to have him receive this extra therapy by the best of the best in the nation!
My latest resolution is to take a trip every month. The trip might only be one day, but I will get out of town and have a change of scenery. I find that I am rejuvenated, relaxed, and have new energy when I get away. It is good for my soul as well as giving me something to look forward to. I have two July trips planned - one to an Indian casino out in the middle of nowhere! It is a one day adventure and I will thoroughly enjoyed myself. The other is to the Phoenix area to spend a couple of days with a friend whose husband died suddenly and unexpectedly this week. I hope I can offer her some solace and insight - if not, I'll just be there.
Rand enjoying a phone call from far-away friends.
All is well - Keep Randbo close.
Love,
Connie
Rand has been doing puzzles galore! He wants each one glued, not returned to the box. There are stacks in his room and I don't know what to do with them as there is no place to display them - now what!?
Thuan became a US Citizen on July 5 and wore Rand's red, white and blue jacket on the big day. Rand was so happy and proud of him!
July 14, Bastille Day, marked one year since Rand left the hospital for good. He came "home" that day to the rainbow/Randbo banner from the Fisher School group and took up residence on Antigua Dr. on July 14, 2006. Last night, returning from an outing with friends, I asked him if he wanted to come home for dessert. He said no. That was the first time ever that he has turned down an opportunity to come to the house. I guess the transition to his new home is complete - this is no longer home to him. I hate that.
He's watching his weight with that enormous will-power of his. He chooses fresh fruit over candy, cookies and goodies every time. I haven't seen a drop in pounds yet, but that will come. His blood test results are the envy of all of us - cholesterol, triglycerides, etc. numbers are perfect. His blood viscosity is still variable and the coumadin is adjusted every two weeks.
Rand's becoming a good solitaire player - when I'm there. He won't try it on his own yet. He misses some moves and doesn't see all the possibilities.
I've ordered a new lounge chair for him. It is electric with separate controls for the back and the foot rest as well as a seat lift. It is made by Zero Gravity and, again it is in blue. The company is changing the controls to the left side for Rand so it should be here by Labor Day. I think it will solve several problems that the current one creates such as being too low to get in and out of easily, letting him raise and lower his legs independently without waiting for help and eliminating the separate foot stool- another piece of furniture that gets in his way. I am concerned about the electric seat lift as I see it as a safety issue - Rand doesn't know when to stop and I fear that he will go head over teacup as that feature catapults him up and out of the chair. I'll have to figure something out. His chair from home worked well until recently, but now he can transfer much easier except that he sits so low in the chair. When he needed two people to help him stand up from the chair, it wasn't a problem. Now it is.
We had company for a few days. They are old friends and Rand loved seeing them and every minute spent with them. While they were here we called another couple that we used to run around with and had a fun, funny six-way conversation. The photo below was taken during that phone call. You can see how Rand enjoyed hearing their voices and laughing at old memories!
This week Rand was a demo patient for Recovering Function - he was the only one and the instructor worked on him in front of the class. Later this month he will again be a demo patient for Recovering Function for eight days. We are so fortunate to have him receive this extra therapy by the best of the best in the nation!
My latest resolution is to take a trip every month. The trip might only be one day, but I will get out of town and have a change of scenery. I find that I am rejuvenated, relaxed, and have new energy when I get away. It is good for my soul as well as giving me something to look forward to. I have two July trips planned - one to an Indian casino out in the middle of nowhere! It is a one day adventure and I will thoroughly enjoyed myself. The other is to the Phoenix area to spend a couple of days with a friend whose husband died suddenly and unexpectedly this week. I hope I can offer her some solace and insight - if not, I'll just be there.
Rand enjoying a phone call from far-away friends.
All is well - Keep Randbo close.
Love,
Connie
Tuesday, July 03, 2007
July 2, 2007
Summer vacations have started with a vengeance and I think I will put this Epistle on vacation for awhile, too. Thuan is off to Vietnam, Jennie is on vacation with her family as is Emily, the OT and PT at Kaiser are scheduling Rand in around their time off and our lives are becoming very quiet and predictable. I will start writing the Epistle again when there is something to write about.
In the meantime, you can picture Rand and me spending time together every day, talking, working on puzzles, going for walks around the block, playing cards and eating healthy weight-conscious things! A restaurant called "The Sonoma Chicken Coop" is about to open half-way between our houses. I'm looking forward to taking Rand there for lunch in the near future.
Until then, be well, stay healthy and keep Rand close.
Love,
Connie
In the meantime, you can picture Rand and me spending time together every day, talking, working on puzzles, going for walks around the block, playing cards and eating healthy weight-conscious things! A restaurant called "The Sonoma Chicken Coop" is about to open half-way between our houses. I'm looking forward to taking Rand there for lunch in the near future.
Until then, be well, stay healthy and keep Rand close.
Love,
Connie
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