Wow--time has passed in a blur. Just last week was the weekend before Thanksgiving, right? Normally, I'd take time to breathe during January and be all recup'd from all the holiday activities. Not this year. We went from holidays to inpatient treatment and this was our first weekend, since mid November where there was nothing going on at all. Anna even crawled into bed with us and slept until 8:30 on Sunday morning, which beat Saturday when she was up before 7.
Pete continues to do well. He needs a bit of prodding to keep up with the brace and walking, but now that we have the right size shoes (I had a small brain fart) it should be no problem. Yesterday, while I was doing I don't even remember what in the kitchen, Pete sat on the floor with Anna and played ball. I had to take pictures it was so cute. I cleaned the house, washed clothes, went to Little Gym with Anna, did grocery shopping, went to church and cooked. I can go for a few more of those.
Monday, February 1, 2010
Monday, January 25, 2010
Dang--3 weeks goes by fast
when you're running at full speed.
We checked Pete into TIRR on January 5, and he comes home, TOMORROW! We are very happy in our house tonight. Anna was having a hard time getting to sleep, but she's down now.
I have to say, and I'm sure Pete will agree, there is a world of difference between being admitted to a stroke rehab facility when you're not completely well from a medical perspective and when you are. They had to start him very slowly last time, he was still having periodic a-fibs, low blood pressures, tummy troubles (and of course that very annoying case of gallbladder disease) and significant cognitive difficulties. He would do 3 hours a day, in Occupational, Speech and Physical therapy. This time, he has those 3 hours, plus 2 or 3 "groups". One of those groups are cognitive, but the other 2 are exercise related classes. So, he could be spending as much as 4 hours a day doing physical or occupational therapy.
You have to know if you could spend that long every day working out, you'd have some progress to report. Well, Pete has done quite a bit of progressing. Of real import is that the tightness in his achille's tendon has been resolved and he's now standing flat on his feet. If the standing exercises hadn't worked, they would be scheduling him to have it lengthened surgically, which would have again delayed his recovery. He is much steadier on his feet and has gained a good deal of strength in his left leg. Because he's in the exercise classes, which are a whole bunch of stretching, his PT has really concentrated on the main event, walking.
Today, I went for discharge training, which I thought was pretty pointless, as we've already been to this rodeo, but it turned out to be a good refresher for me too. They have fitted him with a semi-rigid brace for his ankle and lower leg which makes a big difference in his stability. Anyway, this was a full hour of watching the therapists help Pete walk. Actually, he's doing all the work, all they (and I) were doing is helping him shift his weight from left to right. Ended up he walked enough to equal a short trip to the store. Most of it is very "normal" looking, every now and again he still has short steps, and he's sooo easily distracted. They started him off on a cane, but he was using it for too much weight bearing. They switched him to a thin metal pole. I told the therapist it looked like a ski pole. That exactly what it was. Very light, very thin, and not there at all to bear weight, and that's what he'll be working with next. At the end of the session, they had him walk up and down a full flight of stairs. Seriously, I'm not kidding. Obviously, he had help with the mechanics of the thing, but the strength was all his.
I'll go get him tomorrow at 10:00 or so and bring him home.
We checked Pete into TIRR on January 5, and he comes home, TOMORROW! We are very happy in our house tonight. Anna was having a hard time getting to sleep, but she's down now.
I have to say, and I'm sure Pete will agree, there is a world of difference between being admitted to a stroke rehab facility when you're not completely well from a medical perspective and when you are. They had to start him very slowly last time, he was still having periodic a-fibs, low blood pressures, tummy troubles (and of course that very annoying case of gallbladder disease) and significant cognitive difficulties. He would do 3 hours a day, in Occupational, Speech and Physical therapy. This time, he has those 3 hours, plus 2 or 3 "groups". One of those groups are cognitive, but the other 2 are exercise related classes. So, he could be spending as much as 4 hours a day doing physical or occupational therapy.
You have to know if you could spend that long every day working out, you'd have some progress to report. Well, Pete has done quite a bit of progressing. Of real import is that the tightness in his achille's tendon has been resolved and he's now standing flat on his feet. If the standing exercises hadn't worked, they would be scheduling him to have it lengthened surgically, which would have again delayed his recovery. He is much steadier on his feet and has gained a good deal of strength in his left leg. Because he's in the exercise classes, which are a whole bunch of stretching, his PT has really concentrated on the main event, walking.
Today, I went for discharge training, which I thought was pretty pointless, as we've already been to this rodeo, but it turned out to be a good refresher for me too. They have fitted him with a semi-rigid brace for his ankle and lower leg which makes a big difference in his stability. Anyway, this was a full hour of watching the therapists help Pete walk. Actually, he's doing all the work, all they (and I) were doing is helping him shift his weight from left to right. Ended up he walked enough to equal a short trip to the store. Most of it is very "normal" looking, every now and again he still has short steps, and he's sooo easily distracted. They started him off on a cane, but he was using it for too much weight bearing. They switched him to a thin metal pole. I told the therapist it looked like a ski pole. That exactly what it was. Very light, very thin, and not there at all to bear weight, and that's what he'll be working with next. At the end of the session, they had him walk up and down a full flight of stairs. Seriously, I'm not kidding. Obviously, he had help with the mechanics of the thing, but the strength was all his.
I'll go get him tomorrow at 10:00 or so and bring him home.
Monday, January 4, 2010
TIRR-Inpaitent
Last November, Pete had a baclofen pump put in--and man is it a cute little bump on his tummy. It has been working quite well and doing its job. The muscle spacticity which has made Pete's life miserable for almost a year now is under control.
Not sure if I mentioned this before, but the problem really makes for all sorts of life problems. You know when you're falling asleep and your leg jerks and you wake up suddenly and wonder what that was? Pete would do that all night long, no way he could get a decent night of sleep. Since the pump was put in, he has done much better. Downside of the medication is that it is a central nervous system depressant (duh) and it does make Pete feel tired a good bit. He had some post surgery issues, which have resolved, and he's been released by the neurosurgeon for further therapy as of new years eve.
This afternoon, Pete and I got a call from the admissions people at TIRR, and a bed has opened up for him. We'll go tomorrow to check him in at lunchtime. The prospect of Pete getting 5 or 6 days of therapy is very exciting, although I am going to miss him terribly and feel very sad. We told Anna about it tonight and she said "no", no drama, just "no". I explained Daddy was going to the big gym to get better. No she doesn't get it really, but she said something like "can I have a samich for dinner", the 3 year old version of "since I don't have a choice, I don't want to talk about it anymore". I will not tell you what Steve had to say, because I think any bets on the subject would be sucker.
I'll try to keep everyone posted.
Not sure if I mentioned this before, but the problem really makes for all sorts of life problems. You know when you're falling asleep and your leg jerks and you wake up suddenly and wonder what that was? Pete would do that all night long, no way he could get a decent night of sleep. Since the pump was put in, he has done much better. Downside of the medication is that it is a central nervous system depressant (duh) and it does make Pete feel tired a good bit. He had some post surgery issues, which have resolved, and he's been released by the neurosurgeon for further therapy as of new years eve.
This afternoon, Pete and I got a call from the admissions people at TIRR, and a bed has opened up for him. We'll go tomorrow to check him in at lunchtime. The prospect of Pete getting 5 or 6 days of therapy is very exciting, although I am going to miss him terribly and feel very sad. We told Anna about it tonight and she said "no", no drama, just "no". I explained Daddy was going to the big gym to get better. No she doesn't get it really, but she said something like "can I have a samich for dinner", the 3 year old version of "since I don't have a choice, I don't want to talk about it anymore". I will not tell you what Steve had to say, because I think any bets on the subject would be sucker.
I'll try to keep everyone posted.
Thursday, October 8, 2009
New Developments/Technology
All--it has been a while since I've posted. Let me bring you up to speed.
Pete started The Challenge Program at TIRR Kirby Glen at the end of August. I had expected mid September, and was very happy to get him in sooner rather than later. He is there either 3 or 4 days a week, spending 1 to 3 hours in physical, occupational or speech therapy and several other hours in groups and classes. Some days can run to 5:00 p.m., which makes for a late afternoon. He has been doing very well and I can't imagine it is not immensely helpful for him to have contact with others who are in the same boat as he is, if on different levels. I have noticed significant cognitive improvements as well, and an improvement in his overall out look on things.
He has been dealing with a very serious case of muscle spacticity. Basically, the brain sending way too many messages to his left side trying to get it all to work. This makes his therapies very difficult and also is very uncomfortable. You know how you're falling asleep and something jerks and you are wide awake again? This happens to Pete all the time. There is an effective treatment for the problem in a drug called Baclofen. Unfortnately, it has some pretty obnoxious side effects. It has another method of delivery with a surgically implanted pump to provide a continuous flow directly into his spinal fluid. He went on Monday to have a trial and it went very well. I have just spoken to the surgeon's office and he is now scheduled for surgery on November 19.
After some recovery time, probably 6 or 8 weeks, he will do another stint as an inpatient at TIRR. Neither of us are very impressed with this concept, but it will be essential to build strength in his lower body.
After the trial, they pulled on him in every direction. Basically, bent him around like he's gumby! After that, they put him on a thing called a Gait Mat, which is a long mat attached to a computer to see how evenly he can walk. They put him in a forearm crutch and he did very well, and after he had several steps down, it looked fairly normal. This is the effect of the Baclofen working on him. I can only see good things in the future with him using this.
More later.
Pete started The Challenge Program at TIRR Kirby Glen at the end of August. I had expected mid September, and was very happy to get him in sooner rather than later. He is there either 3 or 4 days a week, spending 1 to 3 hours in physical, occupational or speech therapy and several other hours in groups and classes. Some days can run to 5:00 p.m., which makes for a late afternoon. He has been doing very well and I can't imagine it is not immensely helpful for him to have contact with others who are in the same boat as he is, if on different levels. I have noticed significant cognitive improvements as well, and an improvement in his overall out look on things.
He has been dealing with a very serious case of muscle spacticity. Basically, the brain sending way too many messages to his left side trying to get it all to work. This makes his therapies very difficult and also is very uncomfortable. You know how you're falling asleep and something jerks and you are wide awake again? This happens to Pete all the time. There is an effective treatment for the problem in a drug called Baclofen. Unfortnately, it has some pretty obnoxious side effects. It has another method of delivery with a surgically implanted pump to provide a continuous flow directly into his spinal fluid. He went on Monday to have a trial and it went very well. I have just spoken to the surgeon's office and he is now scheduled for surgery on November 19.
After some recovery time, probably 6 or 8 weeks, he will do another stint as an inpatient at TIRR. Neither of us are very impressed with this concept, but it will be essential to build strength in his lower body.
After the trial, they pulled on him in every direction. Basically, bent him around like he's gumby! After that, they put him on a thing called a Gait Mat, which is a long mat attached to a computer to see how evenly he can walk. They put him in a forearm crutch and he did very well, and after he had several steps down, it looked fairly normal. This is the effect of the Baclofen working on him. I can only see good things in the future with him using this.
More later.
Thursday, July 16, 2009
Our tax dollars at work!
As you may know, Pete was discharged from the outpatient therapy program at TIRR back in March for a couple of reasons. First, the medications he was on were making it impossible for him to focus on his therapy. Second, our insurance benefits were getting close to gone. Well, "close to gone" meant, absolutely no more coverage.
Since then, I have been working on getting him some additional assistance through whatever agencies might be of assistance. Through the aid of one of the attorneys in the office, I have gotten in contact with PTB (powers that be) in Austin in the Department of Aging and Rehabilitative Services (DARS). We got an initial appointment in mid-May to get into the system and get the ball rolling. We had delays because of medical records, and what I consider to be a pretty bad attitude on the part of one of the coordinators at TIRR, who discouraged me from working with DARS in the first place.
Today, we went back for a follow up, and to sign an Individualized Plan for Employment, with a goal of getting Pete's butt back in a desk chair planning and scheduling maintenance jobs. What he will be getting is 32 weeks of Challenge counseling (memory work, group assistance, etc) and a full hour of PT, OT, and Speech Therapy at each session. In addition, they will provide transportation assistance, either by paying an individual to do it or by providing a service to carry him back and forth for the sessions. I was really floored. All I had read told me he would not be eligible for physical or occupational therapy as a stroke patient, only cognitive rehab. I had been looking into a private pay physical therapist to get him back on his feet (literally) and it would have been a stretch and not the same quality as TIRR, but something. Looks like that won't be necessary at this point.
From the local office in Richmond, his file will be transferred to a coordinator in Houston who will work with Challenge to get the ball rolling. As you can imagine, I'm happy for that to happen, I don't know, say, TOMORROW. The counselor will also be referring him to an employment counselor/advocate who will help Pete in that way too. I should expect to hear from the woman in Houston in the next couple of weeks and then he'll be on his way.
Since then, I have been working on getting him some additional assistance through whatever agencies might be of assistance. Through the aid of one of the attorneys in the office, I have gotten in contact with PTB (powers that be) in Austin in the Department of Aging and Rehabilitative Services (DARS). We got an initial appointment in mid-May to get into the system and get the ball rolling. We had delays because of medical records, and what I consider to be a pretty bad attitude on the part of one of the coordinators at TIRR, who discouraged me from working with DARS in the first place.
Today, we went back for a follow up, and to sign an Individualized Plan for Employment, with a goal of getting Pete's butt back in a desk chair planning and scheduling maintenance jobs. What he will be getting is 32 weeks of Challenge counseling (memory work, group assistance, etc) and a full hour of PT, OT, and Speech Therapy at each session. In addition, they will provide transportation assistance, either by paying an individual to do it or by providing a service to carry him back and forth for the sessions. I was really floored. All I had read told me he would not be eligible for physical or occupational therapy as a stroke patient, only cognitive rehab. I had been looking into a private pay physical therapist to get him back on his feet (literally) and it would have been a stretch and not the same quality as TIRR, but something. Looks like that won't be necessary at this point.
From the local office in Richmond, his file will be transferred to a coordinator in Houston who will work with Challenge to get the ball rolling. As you can imagine, I'm happy for that to happen, I don't know, say, TOMORROW. The counselor will also be referring him to an employment counselor/advocate who will help Pete in that way too. I should expect to hear from the woman in Houston in the next couple of weeks and then he'll be on his way.
Tuesday, April 14, 2009
An update
I hope everyone had a happy and blessed Easter weekend. Friday was my first day really off work since January 2 and let me tell you what, I really needed it! Now I just have to wait until Memorial Day which is only 42 days away.
Things in the Beins household since February have been sort of up and down. Pete had a very bad reaction to the Keppra. I think the only way to describe it would be to say it turned him into a sleepwalker. Pretty zoned out and that's just not our Pete (unless he wants to be). I spoke to the doctor and he said that's a rare occurrence with Keppra but it does happen and got him onto something else. Getting off the Keppra took 3 full weeks of reducing the dosage, but it was so worth it! Almost immediately, he responded and is doing so much better. There has been no sign of further seizure activity, so we'll see how quickly we can get him off this medication.
Pete was discharged from TOTS on March 16. We've continued to work on his home program and he continues to do well. Our next stop is expected to be the Challenge program through TIRR, but we're not exactly sure at this point, there may be other plans more fitting his situation. Pete very much wants to get back to work, and continuing with his therapies are the road to that point.
Sometime early this month, he had an appointment with the neuropsychologist to see how he has progressed since his discharge from inpatient treatment. The doc gave him an A+ and said he is at the outside edge of what they had hoped for (but not expected) on his discharge.
Yesterday, we had another visit with the low vision specialist at U of H. Pete has done exceptionally well with the "yoked prism" therapy. The left side neglect is much less pronounced and he's got a much better picture of "where he is" in the world. This is a huge improvement.
I've been asked a few times what can we do for Pete. The only way to help Pete is to encourage him and keep his spirits up. It is very hard for him to see much progress in his recovery, although he has. He is not comparing himself to how he was doing on November 15 when he was released, he is looking at how he was on August 24. It would be very difficult to get your head around the idea of spending a couple of years getting back what you lost overnight.
Things in the Beins household since February have been sort of up and down. Pete had a very bad reaction to the Keppra. I think the only way to describe it would be to say it turned him into a sleepwalker. Pretty zoned out and that's just not our Pete (unless he wants to be). I spoke to the doctor and he said that's a rare occurrence with Keppra but it does happen and got him onto something else. Getting off the Keppra took 3 full weeks of reducing the dosage, but it was so worth it! Almost immediately, he responded and is doing so much better. There has been no sign of further seizure activity, so we'll see how quickly we can get him off this medication.
Pete was discharged from TOTS on March 16. We've continued to work on his home program and he continues to do well. Our next stop is expected to be the Challenge program through TIRR, but we're not exactly sure at this point, there may be other plans more fitting his situation. Pete very much wants to get back to work, and continuing with his therapies are the road to that point.
Sometime early this month, he had an appointment with the neuropsychologist to see how he has progressed since his discharge from inpatient treatment. The doc gave him an A+ and said he is at the outside edge of what they had hoped for (but not expected) on his discharge.
Yesterday, we had another visit with the low vision specialist at U of H. Pete has done exceptionally well with the "yoked prism" therapy. The left side neglect is much less pronounced and he's got a much better picture of "where he is" in the world. This is a huge improvement.
I've been asked a few times what can we do for Pete. The only way to help Pete is to encourage him and keep his spirits up. It is very hard for him to see much progress in his recovery, although he has. He is not comparing himself to how he was doing on November 15 when he was released, he is looking at how he was on August 24. It would be very difficult to get your head around the idea of spending a couple of years getting back what you lost overnight.
Wednesday, February 25, 2009
6 months, wow
That's not enough time to grow a baby, but look at all that's happened!
Six months ago tonight, I was coming home about this time, still in a pretty good amount of shock, that really hasn't worn off that much. Of those 180 days, Pete spent 21 at Methodist then a week at TIRR then a couple days back at Methodist and then 50 some days at TIRR. So about 85 days in the hospital and 95 at home. And it seems like he was in the hospital forever, and probably a little longer to him.
I would have never made it through as well as I have if it had not been for our family, friends and supporters who have followed this blog and otherwise prayed for us. Believe me, what strength I have, I know comes from above.
Since developments are much less common, I have not updated the blog very often. I know that many people check in regularly to see if there's an update. Be sure if something happens, you will know, even if it's a little delayed.
Last Saturday (Valentines Day), Anna and I went to The Little Gym like always and when I came home, I open the door and see Pete's chair, sitting there, with no Pete in it. Heart on the carpet already, I go over to where he is and he's laying on the floor, with no idea how he got there. I called a friend who had the good sense to marry a doctor and relayed his condition and he thought Pete probably had a seizure, which is a pretty common event after a stroke. He perked up very quickly, which meant we didn't get to spend Valentines Day at the ER. We went to see the doctor on Monday and were told yeah, around 6 months is about when the brain has done a bunch of rewiring work and sometimes seizures happen. Pete will take some medication for a few months to make sure everything is A-OK.
Last week, we had an appointment at the eye doctor. After doing a million tests, it's confirmed that Pete has no loss of visual field, what he has is a serious problem with neglect. He will not look at certain parts of a page of text. I hide things from him on his left side, including things like, well, part of his dinner that goes on the left side of the plate. I've been told to get on the "torture Pete" bandwagon.
On a sad note, over the weekend, Pete's dog Dusty went to be with his old buds, Max, Lizzie, & Sadie to run and play in the clouds, somewhere that he is young and frisky, with no grey in his muzzle and no hind leg that hurts when it's cold out. Dusty was a good dog and a good friend to Pete. Anna has not noticed, but she seems to understand being "in heaven" means not here. So, we have been asking God to bless Dusty in heaven.
Today, I picked Pete up from his outpatient therapy and he told me that on Friday, the PT wants to get him up and walking, but not on the locomat, not with the "moses stick" but with a walker. He went some today, but not for long.
The botox injections in his upper body have had a very good effect on the toning in his arm and hand. He has so much better range of motion, including being able to bend is wrist back about as far as I can. Tonight, I asked him to squeeze my hand and he was able to fold his fingers around mine. This is a new development. If he's done it before, it was more involuntary.
We keep moving day by day with the therapies and appointments and homework and exercise. Needless to say, between shuttling him hither and yon, taking care of Anna and the house and working, I'm getting pretty tired and just a little punchy sometimes. Your continued prayers for my fortitude would be appreciated, by more than just me.
I hope to continue to post developments and improvements over the next several weeks and months. What I said before about this being a marathon, not a sprint, was no lie.
Six months ago tonight, I was coming home about this time, still in a pretty good amount of shock, that really hasn't worn off that much. Of those 180 days, Pete spent 21 at Methodist then a week at TIRR then a couple days back at Methodist and then 50 some days at TIRR. So about 85 days in the hospital and 95 at home. And it seems like he was in the hospital forever, and probably a little longer to him.
I would have never made it through as well as I have if it had not been for our family, friends and supporters who have followed this blog and otherwise prayed for us. Believe me, what strength I have, I know comes from above.
Since developments are much less common, I have not updated the blog very often. I know that many people check in regularly to see if there's an update. Be sure if something happens, you will know, even if it's a little delayed.
Last Saturday (Valentines Day), Anna and I went to The Little Gym like always and when I came home, I open the door and see Pete's chair, sitting there, with no Pete in it. Heart on the carpet already, I go over to where he is and he's laying on the floor, with no idea how he got there. I called a friend who had the good sense to marry a doctor and relayed his condition and he thought Pete probably had a seizure, which is a pretty common event after a stroke. He perked up very quickly, which meant we didn't get to spend Valentines Day at the ER. We went to see the doctor on Monday and were told yeah, around 6 months is about when the brain has done a bunch of rewiring work and sometimes seizures happen. Pete will take some medication for a few months to make sure everything is A-OK.
Last week, we had an appointment at the eye doctor. After doing a million tests, it's confirmed that Pete has no loss of visual field, what he has is a serious problem with neglect. He will not look at certain parts of a page of text. I hide things from him on his left side, including things like, well, part of his dinner that goes on the left side of the plate. I've been told to get on the "torture Pete" bandwagon.
On a sad note, over the weekend, Pete's dog Dusty went to be with his old buds, Max, Lizzie, & Sadie to run and play in the clouds, somewhere that he is young and frisky, with no grey in his muzzle and no hind leg that hurts when it's cold out. Dusty was a good dog and a good friend to Pete. Anna has not noticed, but she seems to understand being "in heaven" means not here. So, we have been asking God to bless Dusty in heaven.
Today, I picked Pete up from his outpatient therapy and he told me that on Friday, the PT wants to get him up and walking, but not on the locomat, not with the "moses stick" but with a walker. He went some today, but not for long.
The botox injections in his upper body have had a very good effect on the toning in his arm and hand. He has so much better range of motion, including being able to bend is wrist back about as far as I can. Tonight, I asked him to squeeze my hand and he was able to fold his fingers around mine. This is a new development. If he's done it before, it was more involuntary.
We keep moving day by day with the therapies and appointments and homework and exercise. Needless to say, between shuttling him hither and yon, taking care of Anna and the house and working, I'm getting pretty tired and just a little punchy sometimes. Your continued prayers for my fortitude would be appreciated, by more than just me.
I hope to continue to post developments and improvements over the next several weeks and months. What I said before about this being a marathon, not a sprint, was no lie.
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