I went back to KHC Wednesday morning. Had a meeting that lasted most of the afternoon, then got a motel room, ate and watched HBO. I really wanted to watch the US Gold Cup soccer game, but the Frankfort cable ddn't carry it. After watching my two children play soccer from the ages of five to eighteen, I've picked up a little knowledge of soccer (football to the rest of the world) and now I really enjoy watching it, especially if the men's or women's national team is playing. I only know one other guy, a US citizen, but born in France, that enjoys watching soccer, and he doesn't pull for the US team, but that's okay. I've found that people who enjoy soccer tend to have a more global outlook. I had prepared for the game by buying a 12-pack of Miller long-necks and a large bag of Doritos. Three bottles of Miller and the bag of Doritos made a fine supper, especially since I ate propped up in bed with a bunch of pillows all around me, and watched television. Life doesn't get much better than that. One of the many lucky breaks I got from my stroke was that my swallowing was unaffected. I was on a bland hospital diet for the first week, but basically went back to eating anything after that. When I got to inpatient rehab, they were very surprised. During one of my first meals there, a nurse said, "You can have that?" looking at my plate of salisbury steak, green beans, roll, and iced tea. "Yeah," I said, not understanding her surprise. At that time, I was so uninformed about the effects of stroke, I had no idea how lucky I was.
KHC has never questioned paying for a motel room for me when I stay overnight in Frankfort. They don't have to do that, and, in fact, I'm one of the few people they do it for. It's not a perfect place to work (what place is?) but they've always been good to me, especially after my stroke. I hate to think how most private businesses would have reacted. I imagine my working days would be over. I repay them by working hard and not complaining about the hours I put in.
Thursday morning I got up early and had my shower. I like to shower in the morning, it wakes me up, and one thing I especially enjoy doing is to shower standing up. I used a shower chair in rehab, and when I first got home, but standing up is one of those things that make me feel normal, which is a good feeling. What that means, though, is that in order to wash my feet, I have to balance on one foot while washing the other, then switch. Now I know this is not a good idea, especially for a sixty-two year-old, especially a sixty-two year-old who's had a stroke and has spasticity in one leg, and even more especially, in a motel tub with no rubber mat in it. But I did it anyway, and once more got away with it. I attended another meeting early Thursday morning, then took care of administrative tasks, and drove home.
Friday I worked in my home office and at five, Polly and I went to the Y, she to Zumba, me to the pool. I had tried a little experiment during the day Friday, and hadn't stretched or exercised in any way, and sure enough, the spasticity had been fooled a bit and had relaxed, and I was able to swim better than I had in months. The hardest thing is getting my left elbow up and out of the water, so my stroke is erratic and I list to one side, but I manage to get up and down the pool slowly, but steadily. I showered after 30 minutes of swimming laps, and we came home. Polly made nachos for us and we both managed to stay awake through a rerun of Blue Bloods, Polly's favorite program. She has a crush on Tom Selleck.
I know it sounds like a boring life, and in a few years when we both retire, we plan to do some traveling, but for right now, knowing the struggles that so many stroke survivors and caretakers endure, I appreciate that we can enjoy such a dull and sweet life together. Realizing what might have been makes me appreciate what is.
Saturday, July 27, 2013
Saturday, July 20, 2013
Okay, again
Okay, one more post about spasticity. I had every intention of not writing about it again, but it always seems to bring itself to my attention, so this will probably not be the last one either. I guess I'm as obsessed with it as it is with me.
It's been hot here the last few days, hot and humid. Since my stroke I like hot weather a lot more than I used to - the humidity, though, I can do without, but I'm used to it so it doesn't bother me much. In weather like this I like to go outside and stretch, so yesterday, knowing that I was going to swim later, I went outside in the sun and did some slow stretching, being careful not to bounce, just stretch and hold. As I stretched, I could feel my left side becoming tighter. That's right, the more I stretched, the more the spasticity fought back, until at the end of 30 minutes I could barely hobble back inside and collapse into my office chair. Polly and I left for the Y at 5:00, and I told her that I would be walking better and better able to swim if I hadn't stretched at all, just sat all day. Now that just isn't right, it shouldn't be that way. After swimming for 30 minutes and taking a long hot shower, the muscles on my left side felt like they were pulled so tight they were vibrating with tension, like guitar strings.
What infuriates me the most is that looking back over the course of my recovery, if I had to pick a high point, it was at eight or nine months post-stroke. At that point, cognitively I was almost back 100%, and my balance, coordination and strength were returning rapidly. At that point I could see 100% recovery. I was headed toward it, it was within sight. Then the spasticity started. I refused to give in to it and continued to get stronger and re-establish balance and control. But the stronger I got, the stronger the spasticity got. It feeds off me. Like some kind of weird parasite, the stronger I get, the stronger it gets. The only way to weaken it seems to be to become weaker myself. It's as if it's mission is to not let me achieve full recovery. I believe that if I gave up that goal and stopped trying, it would go dormant and leave me alone. It's quite a dilemma.
I haven't been able to find any guidance abouit my situation, not in my research, not by talking to any health care professional. If the physiatrist I worked with knew anything about anything, he didn't let on. My neurologist didn't seem to know anything about the effects of stroke after the first week. My old PT can only recommend more PT. My PCP is a good generalist, but isn't a specialist in anything, certainly not stroke. So I'm on my own here, so I guess I'll have to chart my own course. Onward and hopefully upward.
It's been hot here the last few days, hot and humid. Since my stroke I like hot weather a lot more than I used to - the humidity, though, I can do without, but I'm used to it so it doesn't bother me much. In weather like this I like to go outside and stretch, so yesterday, knowing that I was going to swim later, I went outside in the sun and did some slow stretching, being careful not to bounce, just stretch and hold. As I stretched, I could feel my left side becoming tighter. That's right, the more I stretched, the more the spasticity fought back, until at the end of 30 minutes I could barely hobble back inside and collapse into my office chair. Polly and I left for the Y at 5:00, and I told her that I would be walking better and better able to swim if I hadn't stretched at all, just sat all day. Now that just isn't right, it shouldn't be that way. After swimming for 30 minutes and taking a long hot shower, the muscles on my left side felt like they were pulled so tight they were vibrating with tension, like guitar strings.
What infuriates me the most is that looking back over the course of my recovery, if I had to pick a high point, it was at eight or nine months post-stroke. At that point, cognitively I was almost back 100%, and my balance, coordination and strength were returning rapidly. At that point I could see 100% recovery. I was headed toward it, it was within sight. Then the spasticity started. I refused to give in to it and continued to get stronger and re-establish balance and control. But the stronger I got, the stronger the spasticity got. It feeds off me. Like some kind of weird parasite, the stronger I get, the stronger it gets. The only way to weaken it seems to be to become weaker myself. It's as if it's mission is to not let me achieve full recovery. I believe that if I gave up that goal and stopped trying, it would go dormant and leave me alone. It's quite a dilemma.
I haven't been able to find any guidance abouit my situation, not in my research, not by talking to any health care professional. If the physiatrist I worked with knew anything about anything, he didn't let on. My neurologist didn't seem to know anything about the effects of stroke after the first week. My old PT can only recommend more PT. My PCP is a good generalist, but isn't a specialist in anything, certainly not stroke. So I'm on my own here, so I guess I'll have to chart my own course. Onward and hopefully upward.
Friday, July 12, 2013
And Again
A post about spasticity again. It is the bane of my life. I would like to ignore it, but can't. It makes itself known as soon as I get up in the morning and doesn't release me until I lie down at night. I try to ignore it during the day, but it will have none of that. That makes it mad. It's obsessed with me, and determined to make me acknowledge its existence.
Tuesday was a sunny day here and I went outside and stretched, and exercised with my 10 pound weights. Then, in the evening Polly and I swam laps at the Y. And how did the spasticity respond to all that? Tuesday night I could barely move. The spasticity was so bad on my left side, my right side was affected. I could feel it on the right side of my neck and shoulder. Regardless, though, I had to get up early Wednesday morning and drive to Frankfort. I had a training on some new software Wednesday morning, a meeting with an architect who is preparing some rental housing designs for us in the afternoon, then a teleconference with a D.C consultant until 6. I stayed overnight in Frankfort Wednesday night, then attended a meeting of the state Behavioral Health Planning and Advisory Council from 10 to 3 Thursday. Then back to KHC to take care of a few items, then a two-hour drive back home. Today is another work day with follow-up items from the meetings of Wednesday and Thursday. Later today, Polly and I are going swimming again, then maybe a relaxing movie night if either of us can stay awake.
My co-workers at KHC seem to have forgotten that I had a stroke and they don't hesitate to schedule me for as many meetings and expect the same amount of work as pre-stroke. They don't realize how fighting the spasticity tires me, because I won't let them see it. But that has been my goal all along so I won't complain. The way I see it, I have a decision to make about the spasticity. I can give in to it and stop exercising and focus on relaxation and maybe some light and slow stretching, or fight it and continue to work out and swim and try my best to live the same life as I did before. My decision is the latter. I will fight it, knowing that it may win and some day I may become immobile and may have to quit work and adopt a whole new lifestyle. But fighting is the only option for me. We have to be true to our nature.
Tuesday was a sunny day here and I went outside and stretched, and exercised with my 10 pound weights. Then, in the evening Polly and I swam laps at the Y. And how did the spasticity respond to all that? Tuesday night I could barely move. The spasticity was so bad on my left side, my right side was affected. I could feel it on the right side of my neck and shoulder. Regardless, though, I had to get up early Wednesday morning and drive to Frankfort. I had a training on some new software Wednesday morning, a meeting with an architect who is preparing some rental housing designs for us in the afternoon, then a teleconference with a D.C consultant until 6. I stayed overnight in Frankfort Wednesday night, then attended a meeting of the state Behavioral Health Planning and Advisory Council from 10 to 3 Thursday. Then back to KHC to take care of a few items, then a two-hour drive back home. Today is another work day with follow-up items from the meetings of Wednesday and Thursday. Later today, Polly and I are going swimming again, then maybe a relaxing movie night if either of us can stay awake.
My co-workers at KHC seem to have forgotten that I had a stroke and they don't hesitate to schedule me for as many meetings and expect the same amount of work as pre-stroke. They don't realize how fighting the spasticity tires me, because I won't let them see it. But that has been my goal all along so I won't complain. The way I see it, I have a decision to make about the spasticity. I can give in to it and stop exercising and focus on relaxation and maybe some light and slow stretching, or fight it and continue to work out and swim and try my best to live the same life as I did before. My decision is the latter. I will fight it, knowing that it may win and some day I may become immobile and may have to quit work and adopt a whole new lifestyle. But fighting is the only option for me. We have to be true to our nature.
Friday, July 5, 2013
Routine
On those work days when I'm not on the road traveling to Frankfort or some other place in Kentucky, I work out of my home office. On those days, around 5:00 pm I change into swim trunks, sandals and a t-shirt, wrap my goggles and a pair of short pants up in a beach towel, and my wife and I head to the YMCA. Her Zumba class starts at 5:30, and while she does that, I swim. I was on the road yesterday, but Tuesday I worked at home.
She likes to get to her class a little early to make sure she gets a good spot, so I went to the pool and watched the YMCA swim team finish up practice at 5:30. Watching them brought back memories of when my daughter and son were young. They both started swimming on the Y team when they were six, and continued through high school, also swimming on their high school team. They were both talented and athletic, and were competitive on the state level, but neither of them had the competitive fire that you have to have to continue swimming after high school. Swimming is an ultra-competitive sport, with even small colleges bringing in swimmers from all over the world.
At 5:30 practice ended, and I got in. We have a very nice Y for a small town, and the pool is large. They keep half the pool for free swim, and reserve three lanes for lap swimmers. Sometines you have to share a lane, but Tuesday I had one to myself. Because of the spasticity, I don't swim nearly as well as I used to. But I manage to get a few laps in even if I do have to stop and rest occasionally. I get out at 6:00 because I have to go slowly and cautiously getting out of the pool, negotiating the pool deck, and getting into the shower. Tuesday, this journey was made harder because of a family that was camped out on the steps at the shallow end. I imagine I could get out using one of the ladders at the deep end, but I feel safer using the steps with the handrail. The young lifeguard on duty didn't tell them to move and I didn't ask them to, although I probably should have. I managed to maneuver around them and get into the locker room without incident. By the time I showered, got dressed, and got out to the lobby, it was 6:30 and Polly was waiting for me. Sometimes we stop and get a salad, usually at Zaxby's, but Tuesday we had a great supper at home of ribs, fried apples, and garden squash and zuchinni.
As we ate, I complained that it took me so long to shower and dress that I could only swim for thirty minutes. Polly said, "At least you can get in and out of the pool by yourself, and I don't have to be with you the whole time." I had to agree with her about that. In the first few months after my hemorrhagic stroke, I was in such bad shape that Polly envisioned her future as being my constant caregiver, so while I sometimes complain about my abilities compared to pre-stroke, Polly usually calls me on it and reminds me of what might have been. She helps me keep things in perspective, and helps me realize that our routine, mundane though it may be, is something that many stroke survivors and their caregivers would be very grateful to have.
She likes to get to her class a little early to make sure she gets a good spot, so I went to the pool and watched the YMCA swim team finish up practice at 5:30. Watching them brought back memories of when my daughter and son were young. They both started swimming on the Y team when they were six, and continued through high school, also swimming on their high school team. They were both talented and athletic, and were competitive on the state level, but neither of them had the competitive fire that you have to have to continue swimming after high school. Swimming is an ultra-competitive sport, with even small colleges bringing in swimmers from all over the world.
At 5:30 practice ended, and I got in. We have a very nice Y for a small town, and the pool is large. They keep half the pool for free swim, and reserve three lanes for lap swimmers. Sometines you have to share a lane, but Tuesday I had one to myself. Because of the spasticity, I don't swim nearly as well as I used to. But I manage to get a few laps in even if I do have to stop and rest occasionally. I get out at 6:00 because I have to go slowly and cautiously getting out of the pool, negotiating the pool deck, and getting into the shower. Tuesday, this journey was made harder because of a family that was camped out on the steps at the shallow end. I imagine I could get out using one of the ladders at the deep end, but I feel safer using the steps with the handrail. The young lifeguard on duty didn't tell them to move and I didn't ask them to, although I probably should have. I managed to maneuver around them and get into the locker room without incident. By the time I showered, got dressed, and got out to the lobby, it was 6:30 and Polly was waiting for me. Sometimes we stop and get a salad, usually at Zaxby's, but Tuesday we had a great supper at home of ribs, fried apples, and garden squash and zuchinni.
As we ate, I complained that it took me so long to shower and dress that I could only swim for thirty minutes. Polly said, "At least you can get in and out of the pool by yourself, and I don't have to be with you the whole time." I had to agree with her about that. In the first few months after my hemorrhagic stroke, I was in such bad shape that Polly envisioned her future as being my constant caregiver, so while I sometimes complain about my abilities compared to pre-stroke, Polly usually calls me on it and reminds me of what might have been. She helps me keep things in perspective, and helps me realize that our routine, mundane though it may be, is something that many stroke survivors and their caregivers would be very grateful to have.
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