Hello! I hope life is good for all of you.
Things here are busy but fine. We're falling into a routine and getting things done. Probably the biggest progress we see right now is in Steve's eating, and that's most likely because we have the time and patience to let him eat at his own pace. Meals can take hours, but who cares? It's a huge improvement in the quality of his life.
Speech continues to be challenging. The quieter environment here and a different style of speech therapy, among other things, might be contributing. Something to work on. Sometimes he surprises us with the things he says, though. For instance, last night we went for a ride for ice cream and then to Kensington Park. When we got home, he said to me, "You know Darlene from therapy? She takes her dog to the horse trail at Kensington. I guess you can let them run there. I can't imagine what Nyah would do with a horse!" It took quite awhile for that to be said, and some repeating and air spelling, but he made his point! At other times, though, it's a struggle to say just a few words. On December 1st, they're getting Steve a device that might help him communicate; it was tried in the hospital but not successful there; they want to give it a try now that he's home. The thought is that he's "all there" as far as thinking, memory, humor, etc. goes, and they want him to be able to express what's on his mind more quickly and easily. The device also provides a voice for the things he types.
We're taking Steve to Muskegon this week to visit with some of our relatives there. One of his favorite places and some of his favorite people...he can't wait. Neither can we. We'll be gone all day Friday, and Saturday morning. If anyone would like to visit this weekend, we'll be home Saturday afternoon and Sunday...please stop by! We'd love to see you.
We are thinking of our many blessings this Thanksgiving and count you among them. We hope you have a wonderful holiday. Take care of yourselves and each other.
Love,
Linda
Sunday, November 23, 2008
Friday, November 14, 2008
Update #98 from Rob and Linda
Hello! Sorry to all who read this blog for the delays in updating...our days are hectic! Although we are VERY glad Steve is home, we never realized how easy it was to get Steve to rehab when he was "in-patient" so to speak.
We rarely use the wheelchair now, but walk with Steve to and from the car, at home, and at Re-hab. This takes a bit longer than simply loading him in the chair and pushing him down the hall to the elevators. The fact that our drive is 40 miles one-way requires much more planning each day. We are on the go from 9AM when Steve wakes to 5 PM when we get home with him. We are really grateful that our re-hab appointments are in the afternoon, and that he has Fridays "off."
We were excited that it was time for Steve to try the Lokomat machine at re-hab. The machine is designed to monitor what a person's muscles are doing when walking, and then can tailor treatment to specific areas to strengthen the weak muscles. Steve was uncomfortable so we had to cut the use short after only 15 minutes. It seems the harness catches him and causes discomfort. We are re-thinking the type of clothing he will wear the next time. He's scheduled to use this machine again next Wednesday.
Speech is still very weak; we have some exercises to help him improve this, and may put you to work when you visit! He told Beth it's like having a dream when you need to call out for help and you can't, so we know he's anxious to make improvements. They are going to get him a device that will speak for him, but have reassured us that this is only temporary. Part of speech therapy is analyzing his memory, ability to do logic problems, math, predicting, etc. etc. and he routinely scores 100% or close to it on all tests. He has lots on his mind that he'd like to share, and the thought is that this device will reduce that frustration. Also, Steve wants to try it, and one of our goals is to give him more ownership of his therapy. Swallowing is still an issue, and he continues to eat very slowly, but this is improving. He is up to 182 lbs and we may now have to think seriously of curtailing how much he eats!
I don't know about Lin, but there are times I get a little impatient waiting for Steve to get better. Improvements seem to come more slowly now; the major, more dramatic accomplishments may have already happened. But when you think about it, this is not about us, but about Steve. He will get better at his own pace, and do things on his own agenda, just like before the accident. As the doctors in Bethesda said, "this is a marathon not a sprint."
That said, when I watched him wash his hands today, he reached up and shut off the water faucet with his left hand. He continued to do this all day like there was never a concern. Just amazing!!!
We also increased his anti-seizure medication today and so far there are no issues.
OK, this is from Linda. I am not as close to the daily therapy sessions as Rob is, so my perspective is different. I took him Thursday and watched as he stood up many times unaided after sitting on a table in PT. Then the therapist sat on a stool facing Steve with his right hand in the air. Steve pushed down on it with his left hand and walked around the gym that way (while the therapist, Andy, scooted backwards on the stool) with no other support. Rob sees this every day, but to me it was breathtaking!
Often Steve's friends write him notes asking how they can visit him. You are always more than welcome at our home! There is also the possibility of meeting you someplace else if that works better for you. For example, some of Steve's friends are meeting him tomorrow to see a movie. It is SO good for him to see his friends, even if it's for just a quick visit. You can call me (Linda) at 248-568-6091 or email me at lindapercha@gmail.com to check on our schedule and yours. You may wonder what to expect when visiting him...know that he's "all there" mentally and understands everything that goes on. His memory, humor, etc. are all intact. He loves to hear your stories and jokes! What challenges him are things like talking and walking, but we are always there with him and he has other ways to communicate.
As always, thank you for your continued thoughts and prayers. We hope all is well with all of you! Take care.
Love,
Rob and Linda
We rarely use the wheelchair now, but walk with Steve to and from the car, at home, and at Re-hab. This takes a bit longer than simply loading him in the chair and pushing him down the hall to the elevators. The fact that our drive is 40 miles one-way requires much more planning each day. We are on the go from 9AM when Steve wakes to 5 PM when we get home with him. We are really grateful that our re-hab appointments are in the afternoon, and that he has Fridays "off."
We were excited that it was time for Steve to try the Lokomat machine at re-hab. The machine is designed to monitor what a person's muscles are doing when walking, and then can tailor treatment to specific areas to strengthen the weak muscles. Steve was uncomfortable so we had to cut the use short after only 15 minutes. It seems the harness catches him and causes discomfort. We are re-thinking the type of clothing he will wear the next time. He's scheduled to use this machine again next Wednesday.
Speech is still very weak; we have some exercises to help him improve this, and may put you to work when you visit! He told Beth it's like having a dream when you need to call out for help and you can't, so we know he's anxious to make improvements. They are going to get him a device that will speak for him, but have reassured us that this is only temporary. Part of speech therapy is analyzing his memory, ability to do logic problems, math, predicting, etc. etc. and he routinely scores 100% or close to it on all tests. He has lots on his mind that he'd like to share, and the thought is that this device will reduce that frustration. Also, Steve wants to try it, and one of our goals is to give him more ownership of his therapy. Swallowing is still an issue, and he continues to eat very slowly, but this is improving. He is up to 182 lbs and we may now have to think seriously of curtailing how much he eats!
I don't know about Lin, but there are times I get a little impatient waiting for Steve to get better. Improvements seem to come more slowly now; the major, more dramatic accomplishments may have already happened. But when you think about it, this is not about us, but about Steve. He will get better at his own pace, and do things on his own agenda, just like before the accident. As the doctors in Bethesda said, "this is a marathon not a sprint."
That said, when I watched him wash his hands today, he reached up and shut off the water faucet with his left hand. He continued to do this all day like there was never a concern. Just amazing!!!
We also increased his anti-seizure medication today and so far there are no issues.
OK, this is from Linda. I am not as close to the daily therapy sessions as Rob is, so my perspective is different. I took him Thursday and watched as he stood up many times unaided after sitting on a table in PT. Then the therapist sat on a stool facing Steve with his right hand in the air. Steve pushed down on it with his left hand and walked around the gym that way (while the therapist, Andy, scooted backwards on the stool) with no other support. Rob sees this every day, but to me it was breathtaking!
Often Steve's friends write him notes asking how they can visit him. You are always more than welcome at our home! There is also the possibility of meeting you someplace else if that works better for you. For example, some of Steve's friends are meeting him tomorrow to see a movie. It is SO good for him to see his friends, even if it's for just a quick visit. You can call me (Linda) at 248-568-6091 or email me at lindapercha@gmail.com to check on our schedule and yours. You may wonder what to expect when visiting him...know that he's "all there" mentally and understands everything that goes on. His memory, humor, etc. are all intact. He loves to hear your stories and jokes! What challenges him are things like talking and walking, but we are always there with him and he has other ways to communicate.
As always, thank you for your continued thoughts and prayers. We hope all is well with all of you! Take care.
Love,
Rob and Linda
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