Thank you for your support and interest in Rand's progress over the last five years. This blog has been an outlet for me and a chronicle of the most difficult time in our lives and some of the most joyful times, too.
I was intending to bring this blog to a close at the end of this month, on the 5th anniversary of Rand's massive stroke. I am doing that a little earlier because the contents of this blog have been plagiarized by an unauthorized individual and used for his own purposes. That blatant misrepresentation is disgusting and deceitful. I will not allow Rand's name to be associated with it.
Once again, thank you for your constant support, love and caring during this scary, tumultuous and triumphant time. Your friendship means more to us than you will ever know.
We will keep in touch with you via email now and again to update you on Rand's progress.
This blog is now closed.
Love,
Rand and Connie
Wednesday, January 05, 2011
Saturday, June 19, 2010
Alaska or Bust!
June 19, 2010
Tomorrow morning, Sunday, June 20, at 7:00 a.m., Rand, Thuan, his wife Tina and their eleven-year-old daughter Cindy and I, leave for the airport to fly to Seattle and start our cruise to Alaska. Sometimes I thought this day would never arrive – other days I hoped it wouldn’t! I have learned so much about Rand, traveling with a handicapped person, rules, regs, potholes in the system, stumbling blocks of all kinds and companies that actually know what they are doing. This trip has been planned and executed much like a military invasion! Rand, Thuan and I have taken two “dry run” trips to Reno for the purpose of finding out how the systems work, how to prepare for all phases of a trip with Rand, including hotel rooms, restrooms, airline procedures and seating, security screening, arranging for shuttles with hydraulic lifts, loaner electric wheelchairs, restaurant table placement, and on and on and on. Through it all, Rand has been a trooper and kept a positive attitude, not always true of “The Wife!” Some areas operate like a well-oiled machine such as the airlines. Other areas are chaotic and just plain unsafe – like shuttle buses with drivers who have never used a handicapped vehicle before.
I was amazed that it took one hour to get Rand through the airport security check the first time. Thuan and I got it down to 30 minutes by the last time through when we planned out a system. We have to remove Rand's usual items: shoes, belt, watch, etc, and then we have to take off all of his braces and send them. along with his cane, through the scanning device. He then is rolled into the security area; he is wanded and then patted down. After that his wheelchair is gone over with a fine-toothed comb, as is his cane. Thuan and I then go through security and get ourselves back together and wait for Rand on the other side where we “reassemble” him and his equipment. We think that 30 minutes is good time and are proud of all three of us for cutting so much time off the process.
Earlier this week I brought one large (30 inch) suitcase and one small one to Rand’s room so Ariel and Thuan could pack the things on my list for him. Yesterday I got a call saying that the small suitcase was waaaaayyyyy too small! So I took another large one over to his house and they filled it to the brim. YIKES! I also took a luggage scale along so we can keep the weights under 50 pounds. It isn’t that Rand is going to be a fashion plate on this trip it is just that he is high maintenance and requires a lot of supplies. I don’t plan on having any of the closet or drawer space in our stateroom!
Speaking of that, our stateroom is handicap accessible and has a veranda. Thuan and his family are right across the hall from us. Unfortunately, the weather prediction is for cool weather and lots of rain all along the Alaska coastline next week. I hope we have some sun – I’m packing a bathing suit just in case. Rand is taking my Antarctica parka as he is always so cold. I knit all of us hats to wear and we will be a sight to behold!
I finally solved the dilemma of how to transport Rand’s electric wheelchair to and from the ship. You wouldn’t believe all the different ways there are to do that and you sure wouldn’t believe the costs involved! I finally found a company in Seattle that rents electric wheelchairs and bed rails to passengers on cruise lines. What a relief!! Both of those items will be waiting for us in our stateroom tomorrow – knock on wood.
Since the last blog posting, Rand has had an artery scan and there is no change in the plaque build up since his stroke. His blood clotting rate is normal and not fluctuating like it has in the past. WHOOPIE! He still has a blood draw every month to check on it. He continues to have physical therapy every three weeks and Thuan works with him five days a week. He can walk considerable distances on smooth surfaces by himself but with someone hovering next to him, just in case. I think his speech is improving a bit, but I’m biased. He will never be able to carry on a conversation but he is adding new words to his vocabulary now and again. I credit his weekly music therapy sessions for improving his confidence, vocabulary and comprehension. Emily, the therapist is wonderful! Rand also took golf lessons again this spring and thoroughly enjoyed it.
Is Rand excited about the cruise you ask? Well, that depends. Rand only lives in the moment. He does not remember what happened earlier in the day and can not anticipate the future, so he doesn’t/can’t think about the cruise that is coming up. When I ask him about it, he either smiles and says “yes,” or he looks blank and says “no” because he doesn’t understand what I’m talking about. I’m anxious to see what he remembers, retains, enjoys, etc. about the whole adventure.
A full report will follow with pictures!
Keep Rand close to your hearts.
Love, Connie
Tomorrow morning, Sunday, June 20, at 7:00 a.m., Rand, Thuan, his wife Tina and their eleven-year-old daughter Cindy and I, leave for the airport to fly to Seattle and start our cruise to Alaska. Sometimes I thought this day would never arrive – other days I hoped it wouldn’t! I have learned so much about Rand, traveling with a handicapped person, rules, regs, potholes in the system, stumbling blocks of all kinds and companies that actually know what they are doing. This trip has been planned and executed much like a military invasion! Rand, Thuan and I have taken two “dry run” trips to Reno for the purpose of finding out how the systems work, how to prepare for all phases of a trip with Rand, including hotel rooms, restrooms, airline procedures and seating, security screening, arranging for shuttles with hydraulic lifts, loaner electric wheelchairs, restaurant table placement, and on and on and on. Through it all, Rand has been a trooper and kept a positive attitude, not always true of “The Wife!” Some areas operate like a well-oiled machine such as the airlines. Other areas are chaotic and just plain unsafe – like shuttle buses with drivers who have never used a handicapped vehicle before.
I was amazed that it took one hour to get Rand through the airport security check the first time. Thuan and I got it down to 30 minutes by the last time through when we planned out a system. We have to remove Rand's usual items: shoes, belt, watch, etc, and then we have to take off all of his braces and send them. along with his cane, through the scanning device. He then is rolled into the security area; he is wanded and then patted down. After that his wheelchair is gone over with a fine-toothed comb, as is his cane. Thuan and I then go through security and get ourselves back together and wait for Rand on the other side where we “reassemble” him and his equipment. We think that 30 minutes is good time and are proud of all three of us for cutting so much time off the process.
Earlier this week I brought one large (30 inch) suitcase and one small one to Rand’s room so Ariel and Thuan could pack the things on my list for him. Yesterday I got a call saying that the small suitcase was waaaaayyyyy too small! So I took another large one over to his house and they filled it to the brim. YIKES! I also took a luggage scale along so we can keep the weights under 50 pounds. It isn’t that Rand is going to be a fashion plate on this trip it is just that he is high maintenance and requires a lot of supplies. I don’t plan on having any of the closet or drawer space in our stateroom!
Speaking of that, our stateroom is handicap accessible and has a veranda. Thuan and his family are right across the hall from us. Unfortunately, the weather prediction is for cool weather and lots of rain all along the Alaska coastline next week. I hope we have some sun – I’m packing a bathing suit just in case. Rand is taking my Antarctica parka as he is always so cold. I knit all of us hats to wear and we will be a sight to behold!
I finally solved the dilemma of how to transport Rand’s electric wheelchair to and from the ship. You wouldn’t believe all the different ways there are to do that and you sure wouldn’t believe the costs involved! I finally found a company in Seattle that rents electric wheelchairs and bed rails to passengers on cruise lines. What a relief!! Both of those items will be waiting for us in our stateroom tomorrow – knock on wood.
Since the last blog posting, Rand has had an artery scan and there is no change in the plaque build up since his stroke. His blood clotting rate is normal and not fluctuating like it has in the past. WHOOPIE! He still has a blood draw every month to check on it. He continues to have physical therapy every three weeks and Thuan works with him five days a week. He can walk considerable distances on smooth surfaces by himself but with someone hovering next to him, just in case. I think his speech is improving a bit, but I’m biased. He will never be able to carry on a conversation but he is adding new words to his vocabulary now and again. I credit his weekly music therapy sessions for improving his confidence, vocabulary and comprehension. Emily, the therapist is wonderful! Rand also took golf lessons again this spring and thoroughly enjoyed it.
Is Rand excited about the cruise you ask? Well, that depends. Rand only lives in the moment. He does not remember what happened earlier in the day and can not anticipate the future, so he doesn’t/can’t think about the cruise that is coming up. When I ask him about it, he either smiles and says “yes,” or he looks blank and says “no” because he doesn’t understand what I’m talking about. I’m anxious to see what he remembers, retains, enjoys, etc. about the whole adventure.
A full report will follow with pictures!
Keep Rand close to your hearts.
Love, Connie
Monday, February 01, 2010
January 31, 2010
Dear Family and Friends,
Three days ago, January 28, was the fourth anniversary of Rand’s stroke. I can’t believe how fast the time has gone, and how much progress he has made. Rand was aware of the date and we talked about the event that changed both of our lives. An update on Rand is over due.
About four years ago today, the doctors told me that Rand would never walk again. Today he walks every day under Thuan’s supervision. He has physical therapy once a month and is doing unbelievable things. At each session he starts out by walking “the circuit” throughout the PT unit with Laura, the PT, and Thuan. Something over a year ago it took Rand 17 minutes and 30 seconds to walk the circuit. Last week he did it in five minutes and 53 seconds! He never gives up, never complains, just smiles and keeps on going. After that routine he has a few minutes rest and then Laura ties his legs together with an elastic band and he stands by the parallel bars. He kicks each leg out to the side ten times and then walks sideways along the bar to one end and back to the other. Then he kicks each leg back at an angle ten times and walks the bar again. Remember that the band hobbles his legs and his left leg is paralyzed. All in all, he kicks each leg in each direction 100 times and walks the bar ten times. By the end of the session he is tired but still smiling! I’ve tried to keep up with him in the kicking and sideways walking but I can’t do it! He is a wonder.
Rand’s speech is improving but it is still problematic. He has music therapy every week and I think that has helped him more than all the speech therapy of the last few years. His pronunciation, syntax and vocabulary are improving although it is still extremely difficult for him to make his wants and needs known. Every once in awhile he will form a simple, complete sentence and I don’t think he even realizes it. I suspect he knows exactly what he wants to say and when it comes out that way I am surprised but he isn’t!
His awareness of the world around him has improved dramatically as has his comprehension of the spoken word. Last week, Ariel, his main caregiver, asked him how old he would be on his next birthday. Rand counted out loud on his fingers to seven. Ariel said “8, 9” and Rand said “No!” He looked at me and I put one finger up and Rand said triumphantly, “Seven and one!!” He was exactly right – he will be seventy-one on February 24. That is the first time since his stroke that he has either known or been able to communicate that information. I was whooping and clapping!
Even though Rand can only count to ten, cannot add or subtract and numbers mean very little to him, he can clean your clock in Blackjack and Solitaire! A dear friend comes over every weekend to play Blackjack and most often Rand wins. They will play twenty or more hands and Geoff gets taken to the cleaners! Rand plays Solitaire during the day and he and I play Solitaire every afternoon for an hour or more. When a friend started reteaching him how to play a couple of months after his stroke, he couldn’t tell the difference between the suits or the colors of the cards, let alone the numbers and their sequence. Now he plays quite well – I think he wins too frequently when he plays alone! I wouldn’t say he cheats, but he does get confused at times and somehow manages to win under odd deals of the cards! He forgets if the red five goes on the black four or vice versa. He is meticulous in the neatness of the cards. Each pile must be lined up perfectly, the aces on top must have their logos facing the proper direction and nothing must be messy or out of alignment. He will stop playing frequently to straighten out all the cards. When he wins, he lines the suits up neatly at the edge of the table so he can admire them before carefully putting them back in the box. The perfectly arranged boxes are not used again until all seven decks of cards are in order via winning hands. Then he will start with the first deck, shuffle it in his electric card shuffler and start again. He never tires of playing cards.
In early December, Thuan, Rand and I went on the first of several overnight trips in preparation for the cruise to Alaska in June. Rand was absolutely ecstatic about staying in a hotel! He laughed and whooped, giggled, grinned and drove around the room again and again, smiling to beat the band! He was thrilled and the happiest I have ever seen him. The change of scenery and routine were the best things that ever happened to him! I thought I knew the routine Rand went through each day, but I was unprepared. It was like a military invasion! Thuan and I each had a small overnight bag but Rand had a big suitcase full of clothes and supplies. The back of the van was piled high with pillows, braces, bed rails, canes, food, coolers, you name it. Thuan came in at 7:00 a.m. the next morning to get Rand ready for the day and that process took two hours. The food was for Rand to eat when he took his first batch of medications before breakfast. There were several changes of clothes, just in case, jackets, sweatshirts and sweaters as Rand is always chilly. We are going over night again on Valentine’s Day and this time we will try to pare down the amount of things we take. We have to be mean and lean when we get on that plane for Seattle on June 20!
Rand bowls every Tuesday afternoon and will start an Adaptive Golf series in April. He joins me at the bowling alley now and again to watch his friends bowl in the weekly league. He cheers for each spare and strike we make, puts the team envelopes in order, has a beer and a great time. The weather has been so cold and rainy that he hasn’t wanted to venture out much since Christmas.
In November Rand agreed to donate Max, the speech-generating device, back to the hospital that helped us get it in the first place. The speech therapist had a child who could use it and that was a perfect solution. Max has not been missed but I’m so glad that we went through all the grief to get the grant and give it the old college try. I would never have been satisfied if we hadn’t done that. If Rand could have someone by his side at all times, prompting him on its use, it might have worked. Without that, there was no way he could make use or sense of it.
There is one more thing that you should know. For many, many months I have struggled with the idea of bringing Rand home to live, with the help of a 24-hour caregiver living with us. I have talked to doctors, therapists, caregivers, geriatric consultants, friends, family and to myself. I have debated the wisdom of making that move, I have made lists upon lists of pros and cons for both Rand and me. I feel strongly both ways. I want Rand home but I also need to think of myself. I would become his second caregiver; my time and house would no longer be mine/ours. Rand’s and my life together has changed forever and even through he has made so much progress, I have decided that I can’t do it and I don’t think it is in Rand’s best interest either. For as far as he has come in the last four years, he is still totally dependant, he is like a child in many ways. He cannot initiate anything including help that he needs. He can’t figure out that he needs a Kleenex when his nose runs, the water in his glass when he is thirsty, or the snacks on his table to eat when he is hungry. He watches the world go by through his big window onto the street, he watches TV or plays Solitaire. Sometimes, if I call his attention to them, he will page though some magazines such as Sports Illustrated and Time. He cannot remember that he has cards, books and letters to look at. He can not take the initiative to use the pens, paints, markers, and paper that are always handy, to put a puzzle together, to do any or all of the other activities that are available to him. His world is very small and very compartmentalized. Maybe that is how he handles life now, how he controls his environment. At least for the foreseeable future, we will continue to spend several hours a day together but live in separate houses. I don’t know if my decision is right, is selfish, is something I will regret or is the best for both of us. I revisit the decision often and, who knows, maybe I will change my mind someday.
Keep Rand close to you hearts and in your thoughts and prayers. He is truly a remarkable man.
Love,
Connie
Three days ago, January 28, was the fourth anniversary of Rand’s stroke. I can’t believe how fast the time has gone, and how much progress he has made. Rand was aware of the date and we talked about the event that changed both of our lives. An update on Rand is over due.
About four years ago today, the doctors told me that Rand would never walk again. Today he walks every day under Thuan’s supervision. He has physical therapy once a month and is doing unbelievable things. At each session he starts out by walking “the circuit” throughout the PT unit with Laura, the PT, and Thuan. Something over a year ago it took Rand 17 minutes and 30 seconds to walk the circuit. Last week he did it in five minutes and 53 seconds! He never gives up, never complains, just smiles and keeps on going. After that routine he has a few minutes rest and then Laura ties his legs together with an elastic band and he stands by the parallel bars. He kicks each leg out to the side ten times and then walks sideways along the bar to one end and back to the other. Then he kicks each leg back at an angle ten times and walks the bar again. Remember that the band hobbles his legs and his left leg is paralyzed. All in all, he kicks each leg in each direction 100 times and walks the bar ten times. By the end of the session he is tired but still smiling! I’ve tried to keep up with him in the kicking and sideways walking but I can’t do it! He is a wonder.
Rand’s speech is improving but it is still problematic. He has music therapy every week and I think that has helped him more than all the speech therapy of the last few years. His pronunciation, syntax and vocabulary are improving although it is still extremely difficult for him to make his wants and needs known. Every once in awhile he will form a simple, complete sentence and I don’t think he even realizes it. I suspect he knows exactly what he wants to say and when it comes out that way I am surprised but he isn’t!
His awareness of the world around him has improved dramatically as has his comprehension of the spoken word. Last week, Ariel, his main caregiver, asked him how old he would be on his next birthday. Rand counted out loud on his fingers to seven. Ariel said “8, 9” and Rand said “No!” He looked at me and I put one finger up and Rand said triumphantly, “Seven and one!!” He was exactly right – he will be seventy-one on February 24. That is the first time since his stroke that he has either known or been able to communicate that information. I was whooping and clapping!
Even though Rand can only count to ten, cannot add or subtract and numbers mean very little to him, he can clean your clock in Blackjack and Solitaire! A dear friend comes over every weekend to play Blackjack and most often Rand wins. They will play twenty or more hands and Geoff gets taken to the cleaners! Rand plays Solitaire during the day and he and I play Solitaire every afternoon for an hour or more. When a friend started reteaching him how to play a couple of months after his stroke, he couldn’t tell the difference between the suits or the colors of the cards, let alone the numbers and their sequence. Now he plays quite well – I think he wins too frequently when he plays alone! I wouldn’t say he cheats, but he does get confused at times and somehow manages to win under odd deals of the cards! He forgets if the red five goes on the black four or vice versa. He is meticulous in the neatness of the cards. Each pile must be lined up perfectly, the aces on top must have their logos facing the proper direction and nothing must be messy or out of alignment. He will stop playing frequently to straighten out all the cards. When he wins, he lines the suits up neatly at the edge of the table so he can admire them before carefully putting them back in the box. The perfectly arranged boxes are not used again until all seven decks of cards are in order via winning hands. Then he will start with the first deck, shuffle it in his electric card shuffler and start again. He never tires of playing cards.
In early December, Thuan, Rand and I went on the first of several overnight trips in preparation for the cruise to Alaska in June. Rand was absolutely ecstatic about staying in a hotel! He laughed and whooped, giggled, grinned and drove around the room again and again, smiling to beat the band! He was thrilled and the happiest I have ever seen him. The change of scenery and routine were the best things that ever happened to him! I thought I knew the routine Rand went through each day, but I was unprepared. It was like a military invasion! Thuan and I each had a small overnight bag but Rand had a big suitcase full of clothes and supplies. The back of the van was piled high with pillows, braces, bed rails, canes, food, coolers, you name it. Thuan came in at 7:00 a.m. the next morning to get Rand ready for the day and that process took two hours. The food was for Rand to eat when he took his first batch of medications before breakfast. There were several changes of clothes, just in case, jackets, sweatshirts and sweaters as Rand is always chilly. We are going over night again on Valentine’s Day and this time we will try to pare down the amount of things we take. We have to be mean and lean when we get on that plane for Seattle on June 20!
Rand bowls every Tuesday afternoon and will start an Adaptive Golf series in April. He joins me at the bowling alley now and again to watch his friends bowl in the weekly league. He cheers for each spare and strike we make, puts the team envelopes in order, has a beer and a great time. The weather has been so cold and rainy that he hasn’t wanted to venture out much since Christmas.
In November Rand agreed to donate Max, the speech-generating device, back to the hospital that helped us get it in the first place. The speech therapist had a child who could use it and that was a perfect solution. Max has not been missed but I’m so glad that we went through all the grief to get the grant and give it the old college try. I would never have been satisfied if we hadn’t done that. If Rand could have someone by his side at all times, prompting him on its use, it might have worked. Without that, there was no way he could make use or sense of it.
There is one more thing that you should know. For many, many months I have struggled with the idea of bringing Rand home to live, with the help of a 24-hour caregiver living with us. I have talked to doctors, therapists, caregivers, geriatric consultants, friends, family and to myself. I have debated the wisdom of making that move, I have made lists upon lists of pros and cons for both Rand and me. I feel strongly both ways. I want Rand home but I also need to think of myself. I would become his second caregiver; my time and house would no longer be mine/ours. Rand’s and my life together has changed forever and even through he has made so much progress, I have decided that I can’t do it and I don’t think it is in Rand’s best interest either. For as far as he has come in the last four years, he is still totally dependant, he is like a child in many ways. He cannot initiate anything including help that he needs. He can’t figure out that he needs a Kleenex when his nose runs, the water in his glass when he is thirsty, or the snacks on his table to eat when he is hungry. He watches the world go by through his big window onto the street, he watches TV or plays Solitaire. Sometimes, if I call his attention to them, he will page though some magazines such as Sports Illustrated and Time. He cannot remember that he has cards, books and letters to look at. He can not take the initiative to use the pens, paints, markers, and paper that are always handy, to put a puzzle together, to do any or all of the other activities that are available to him. His world is very small and very compartmentalized. Maybe that is how he handles life now, how he controls his environment. At least for the foreseeable future, we will continue to spend several hours a day together but live in separate houses. I don’t know if my decision is right, is selfish, is something I will regret or is the best for both of us. I revisit the decision often and, who knows, maybe I will change my mind someday.
Keep Rand close to you hearts and in your thoughts and prayers. He is truly a remarkable man.
Love,
Connie
Tuesday, October 13, 2009
October 13, 2009
Complaints about the infrequency of my updates on Rand are once again filling my email box! My apologies for being so lax about keeping you informed. Rand continues to be my top priority and the rest of my time is spent running errands, taking care of the house, doing all those things both of us used to do. Time slips away so quickly.
In the last chapter, Rand was being tested for possible seizures, which occurred intermittently. The neurologist found no evidence of seizures now or in the past. Whoopie!! He has no idea what occurs and Rand has not had an episode since the one on July 4. If he should have another one, the neurologist has flagged his medical record to indicated that an EEG be done immediately. We’re keeping our fingers crossed.
Rand’s use of Max, the speech-generating device, has come to a screeching halt. After he stopped seeing the speech pathologist, he also stopped using Max and it has been sitting idle in his room since August. He is not willing to give it up, to use it or to donate it just yet, so it collects dust. I hope he will make a decision soon as the technology is getting older as we speak. I don’t want to force the issue but it needs to be resolved. The speech pathologist said that there is no point in Rand continuing with her services as, once again, she is not seeing any progress. She said that his brain is like Swiss cheese and it will never recover. Yet, I can see/hear improvement in his speech – it is slow, uneven, halting, but always improving. Others who have not seen or talked to him for some time also note improvements. I guess it will be for us to encourage and celebrate his progress, as the professionals have to devote their time to those who will benefit most. For instance, Rand had swallowing lessons several times daily for seven months after his stroke and before he could eat again. That issue alone made it possible for him to leave the hospital and live in assisted living.
The big news is that Rand can now walk on his own!! He will always need his quad cane, but he no longer needs Thuan or me holding on to him and no longer needs to wear a gait belt. He can get up from his recliner (which pushes him up into a near standing position) and take off across the room and down the hall! I never thought I’d see the day! I still hover around him, ready to steady him or catch him if he stumbles, but he walks well with good balance and a steady stride. He hasn’t walked outside yet as the sidewalks pose too many hazards – but that will come. It has taken three and a half years for him to get to this point, with therapy every day. I bet the next “step” is not that far away!
Rand’s Adapted Bowling sessions started again last month. It is so fun to watch Thuan, who had never seen a bowling alley before, compete against Rand. They have a great time together and I am the go-fer, ball girl, cheerleader, coach and driver. Think of Rand every Tuesday at 3:30 p.m. PST, as he and Thuan are bowling, hooting, laughing and high-fiving each other!
Earlier in this blog, I mentioned Rand’s physical therapy sessions. Below are some photos of him as he goes through the paces. His legs are tied together just above his knees with a strong plastic band and he has to kick sideways, backward and at an angle 100 times on each leg. Then he has to walk the length of the parallel bars ten times each way. All of this is after he has walked the long course at the PT facility. You can see the determination on his face, the orange band around his legs as well as the struggle he has to complete the session. But he has never given up, never complained, has endured the pain for over three years. The photos are self explanatory and do not need captions.
Keep Rand close to your hearts and in your thoughts. He is remarkable.
Love,
Connie
In the last chapter, Rand was being tested for possible seizures, which occurred intermittently. The neurologist found no evidence of seizures now or in the past. Whoopie!! He has no idea what occurs and Rand has not had an episode since the one on July 4. If he should have another one, the neurologist has flagged his medical record to indicated that an EEG be done immediately. We’re keeping our fingers crossed.
Rand’s use of Max, the speech-generating device, has come to a screeching halt. After he stopped seeing the speech pathologist, he also stopped using Max and it has been sitting idle in his room since August. He is not willing to give it up, to use it or to donate it just yet, so it collects dust. I hope he will make a decision soon as the technology is getting older as we speak. I don’t want to force the issue but it needs to be resolved. The speech pathologist said that there is no point in Rand continuing with her services as, once again, she is not seeing any progress. She said that his brain is like Swiss cheese and it will never recover. Yet, I can see/hear improvement in his speech – it is slow, uneven, halting, but always improving. Others who have not seen or talked to him for some time also note improvements. I guess it will be for us to encourage and celebrate his progress, as the professionals have to devote their time to those who will benefit most. For instance, Rand had swallowing lessons several times daily for seven months after his stroke and before he could eat again. That issue alone made it possible for him to leave the hospital and live in assisted living.
The big news is that Rand can now walk on his own!! He will always need his quad cane, but he no longer needs Thuan or me holding on to him and no longer needs to wear a gait belt. He can get up from his recliner (which pushes him up into a near standing position) and take off across the room and down the hall! I never thought I’d see the day! I still hover around him, ready to steady him or catch him if he stumbles, but he walks well with good balance and a steady stride. He hasn’t walked outside yet as the sidewalks pose too many hazards – but that will come. It has taken three and a half years for him to get to this point, with therapy every day. I bet the next “step” is not that far away!
Rand’s Adapted Bowling sessions started again last month. It is so fun to watch Thuan, who had never seen a bowling alley before, compete against Rand. They have a great time together and I am the go-fer, ball girl, cheerleader, coach and driver. Think of Rand every Tuesday at 3:30 p.m. PST, as he and Thuan are bowling, hooting, laughing and high-fiving each other!
Earlier in this blog, I mentioned Rand’s physical therapy sessions. Below are some photos of him as he goes through the paces. His legs are tied together just above his knees with a strong plastic band and he has to kick sideways, backward and at an angle 100 times on each leg. Then he has to walk the length of the parallel bars ten times each way. All of this is after he has walked the long course at the PT facility. You can see the determination on his face, the orange band around his legs as well as the struggle he has to complete the session. But he has never given up, never complained, has endured the pain for over three years. The photos are self explanatory and do not need captions.
Keep Rand close to your hearts and in your thoughts. He is remarkable.
Love,
Connie
Monday, July 13, 2009
July 13, 2009
Captain America Update.
This update on Rand is so long over due that I am getting complaints from friends and family! In the last entry I had just found out that Rand’s left artery was completely blocked so vascular surgery is out of the question. After discussing the situation with his doctor, the decision is to keep a close eye on the other artery and see what the rate of build up is. That will decide the next steps.
Late last fall, Rand started having “episodes” now and again. I was afraid that they were TIAs or mini-strokes. They have become more frequent (about twice a month) and the neurologist told me to call 911 whenever Rand had one. Just as we were sitting down for dinner on July 4, Captain America had another episode. We spent the next eight hours in ER where he had a CAT scan and an EKG. Both tests showed that he is not having TIAs, thank goodness, but they suspect he is having seizures. He will have an EEG this afternoon to help determine what is going on. I don’t know when we will get the results, but the doctor said that they might not give him meds to control the seizures because the side effects are so tough and he is already taking so many meds, that they are reluctant to add more. I will keep you informed via this blog. Keep your fingers crossed that it is something that is easy to control.
Rand is once again having speech therapy every week. The therapist is focusing on the speech-generating device (Max, son of Mo) that we got about a year ago. During the almost yearlong process of writing the grant, having it lost, rewriting, etc, Rand’s speech needs changed a lot. By the time Max arrived, Rand had moved beyond it in some ways and in some ways Max was beyond Rand’s ability to use effectively. For instance, it is critical that Rand be able to read and write, at least on a basic level, to use Max. He cannot do either one so Max’s strengths remain untapped. The speech therapy will continue into mid-August. If there is little or no progress with Max, then the therapist has suggested that we donate it to someone who can make good use of it. I had such high hopes for this device, but as the therapist said, Rand’s brain is now like Swiss cheese - there are holes and gaps everywhere,
We have been so busy the last few months but I can’t tell you what we have been doing! The Adapted Golf program that Rand attended went by the wayside when the sponsoring hospital was closed. Rand did participate in the Saving Strokes golf event in May. There may be another golf series starting next spring but that is a wait-and-see proposition. The Adapted Bowling series is on hiatus for the summer as is Recovering Function. His music therapy continues every week and he is doing well. Nonetheless, we seem to be on the go all the time. Captain America is doing wonderful things in physical therapy. His walking improves every session – he is walking very straight and tall, with a good, smooth gait and improved timing. Now he prefers to walk around our house using his quad-cane rather than using his wheelchair. He never ceases to amaze me.
Two weeks ago today I returned from a month in Italy and the Eastern Mediterranean. What a wonderful trip! My sister and I and two friends spent a week in Rome, then cruised to Croatia, Greece, some of the Greek islands, and Turkey. A friend and I went on to Milan for a few days before returning home. My cousin, his wife and family lived in our house during that time and really saw the Bay Area. It was great to have them here, keeping an eye on Rand and on the house. Rand is happy to have me home!
Love,
Connie
P.S. It is later in the day and the EEG went well. The technician said that she saw no traces of seizures, no evidence that there have been any! WHOOPEE!! We'll get the final report from the neurologist in the next couple of days. I'll keep you posted.
This update on Rand is so long over due that I am getting complaints from friends and family! In the last entry I had just found out that Rand’s left artery was completely blocked so vascular surgery is out of the question. After discussing the situation with his doctor, the decision is to keep a close eye on the other artery and see what the rate of build up is. That will decide the next steps.
Late last fall, Rand started having “episodes” now and again. I was afraid that they were TIAs or mini-strokes. They have become more frequent (about twice a month) and the neurologist told me to call 911 whenever Rand had one. Just as we were sitting down for dinner on July 4, Captain America had another episode. We spent the next eight hours in ER where he had a CAT scan and an EKG. Both tests showed that he is not having TIAs, thank goodness, but they suspect he is having seizures. He will have an EEG this afternoon to help determine what is going on. I don’t know when we will get the results, but the doctor said that they might not give him meds to control the seizures because the side effects are so tough and he is already taking so many meds, that they are reluctant to add more. I will keep you informed via this blog. Keep your fingers crossed that it is something that is easy to control.
Rand is once again having speech therapy every week. The therapist is focusing on the speech-generating device (Max, son of Mo) that we got about a year ago. During the almost yearlong process of writing the grant, having it lost, rewriting, etc, Rand’s speech needs changed a lot. By the time Max arrived, Rand had moved beyond it in some ways and in some ways Max was beyond Rand’s ability to use effectively. For instance, it is critical that Rand be able to read and write, at least on a basic level, to use Max. He cannot do either one so Max’s strengths remain untapped. The speech therapy will continue into mid-August. If there is little or no progress with Max, then the therapist has suggested that we donate it to someone who can make good use of it. I had such high hopes for this device, but as the therapist said, Rand’s brain is now like Swiss cheese - there are holes and gaps everywhere,
We have been so busy the last few months but I can’t tell you what we have been doing! The Adapted Golf program that Rand attended went by the wayside when the sponsoring hospital was closed. Rand did participate in the Saving Strokes golf event in May. There may be another golf series starting next spring but that is a wait-and-see proposition. The Adapted Bowling series is on hiatus for the summer as is Recovering Function. His music therapy continues every week and he is doing well. Nonetheless, we seem to be on the go all the time. Captain America is doing wonderful things in physical therapy. His walking improves every session – he is walking very straight and tall, with a good, smooth gait and improved timing. Now he prefers to walk around our house using his quad-cane rather than using his wheelchair. He never ceases to amaze me.
Two weeks ago today I returned from a month in Italy and the Eastern Mediterranean. What a wonderful trip! My sister and I and two friends spent a week in Rome, then cruised to Croatia, Greece, some of the Greek islands, and Turkey. A friend and I went on to Milan for a few days before returning home. My cousin, his wife and family lived in our house during that time and really saw the Bay Area. It was great to have them here, keeping an eye on Rand and on the house. Rand is happy to have me home!
Love,
Connie
P.S. It is later in the day and the EEG went well. The technician said that she saw no traces of seizures, no evidence that there have been any! WHOOPEE!! We'll get the final report from the neurologist in the next couple of days. I'll keep you posted.
Tuesday, March 31, 2009
March 31, 2009
Yesterday the neurologist informed me that the CT scan last week showed that Rand’s left carotid artery is completely blocked – not even a trickle of blood is getting through to the brain on that side. Consequently, vascular surgery to clear out that artery is not feasible. In two weeks I will meet with the doctor and find out the implications and options for Rand as a result of that test. I will post a summary of that meeting on this blog. I am not going to discuss the results of the scan with Rand as he has already forgotten about it.
This afternoon we are off to adapted bowling and life goes on.
Keep Rand close.
Love,
Connie
This afternoon we are off to adapted bowling and life goes on.
Keep Rand close.
Love,
Connie
Tuesday, March 24, 2009
March 24, 2009
Rand celebrating his February birthday.
Recently, during physical therapy at the hospital, Rand suffered a TIA, which is a precursor to a stroke, and he spent several hours in ER. As a result, the neurologist ordered an ultra sound of his carotid arteries. Today we met with the neurologist to discuss the results. The ultra sound showed that the left carotid artery is totally blocked and supplies no blood to Rand's brain. The doctor told us that the ultra sound is not completely accurate and reliable so he has ordered a CTV scan with an iodine contrast which Rand will have this Friday morning. He said that if the CT scan shows that the artery is really totally blocked there is nothing they can do, but if there is even a trickle of blood getting through that artery, then they have some options. The first and foremost option is surgery to clean out/roto-router the artery. That is a dangerous surgery because a piece of plaque in the artery can be easily jarred loose, travel to the brain or other major organs and be fatal. There are other procedures as well, but the doctor didn't discuss them with us. About a week or ten days after the CT scan we will meet with the neurologist again and hear those results. We will then either say good bye to him or be sent on to a vascular surgeon for a consultation and some decision making.
The other day I was telling Rand about the tests that were coming up and that he had gone through similar ones about three years ago. At that time the doctors did not recommend vascular surgery because he was so weak that they did not feel he could survive the operation. When I told him that there might be a similar discussion this time, Rand said, "NO! NO!! NO!!!" After the appointment today, we went out for lunch and I told him again about the procedure on Friday and the options that the results would produce. He listened carefully, had a pained, anxious look on his face but did not say anything.
The neurologist examined Rand and was pleased with what he could do, very interested in what deficits he has and how his processing works. Rand could tell the doctor his name but not mine. He did know that I was not his mother or sister and laughed at both suggestions. When the word "wife" came up he said Yes. Not too long ago he didn't understand the difference between the terms and confused the roles when questioned. When asked to hold up three fingers and point them at the ceiling, he struggled and looked at me to confirm that he was doing the right things, that he had figured out three fingers and the location of the ceiling. After a hesitant and shaky start, he managed to follow the directions correctly and was very proud of himself, emphatically pointing at the ceiling much longer than necessary.
The neurologist also made a referral to the Speech Pathology Dept. It will be interesting to see if they will continue to provide services to Rand after all this time.
He made some comments about quality of life and said that he fully expected Rand's life span to be another 15 to 20 years.
This has been a long, tiring day, filled with anxiety and the unknown. Rand was so tired after lunch that he decided not to go bowling which was fine with me! To top it all off, this afternoon I got a call from the cruise line about our celebratory Mexican Riviera Cruise in April, 2010. The company has canceled all cruises to Mexico and added trips in the Caribbean instead. Uff da. I am back to the drawing board. Oh, well, it gives me something else to think about, look forward to and to keep me out of trouble.
I will keep you posted on the next steps. Please keep Rand close to your hearts and in your thoughts and prayers. It is an anxious time.
Love,
Connie
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