Blog at http://drpeg2003.blogspot.com/
May 20, 2006 (2:10pm)
I think that when Gary was worse off and I wasn’t with him as much, my writing of the emails/blog might have been more coherent. Now that I’m spending more time with him, I have time only for snatches of writing here and there. So if you’ve noticed a decrease in quality, that is why. (Or so I’ll say ;-))
Okay, catching up on the last mail we got at B’ham. Thanks to Mom Gruenhage, Beth Fletcher, Lois Staving, the Barjenbruchs, and Wanjun Hu.
And I would like to mention the email from Bob, Gary’s younger brother – I hope Bob won’t mind. It was very sweet. Bob mentioned how one time when both he and Gary were living in California, Bob got mad over some trivial thing, and Gary told him not to get mad, but to solve the problem. Bob said he always remembered that, that it helped him, and how he could see how Gary still lived by that. I was reminded of Bob’s email yesterday, when the counselor assigned to Gary came by to meet Gary and tell him they had an appointment scheduled for some time next week. She asked if Gary had any questions, or if there were any issues he wanted to discuss. Gary told her he thought everything had pretty much been covered – then later worried she might not appreciate the way he had put that, indicating she wasn’t necessary :-). I told him that it had seemed to me he had taken this pretty well from the beginning, and asked if that was really the case (since communication had been somewhat limited there for a while). He said maybe he was kidding himself (I don’t think he is), but he felt he had accepted that this was the way it was going to be, and that the only thing to do was to make the best of it. I mentioned how I had felt that it was useless to ask the why’s because I felt there was no answer (at least that I could comprehend). He said even if he knew the answers to why the accident had happened, it wouldn’t matter because it didn’t change how things were.
Broadening that from this specific instance to a life-view, that has pretty much been my guiding philosophy for years now – beliefs, understanding, *in a sense* don’t matter – it’s how you live your life (I put “in a sense” because I know there are those who would argue that it is beliefs and understanding that guide how life is lived).
Besides a counselor, Gary has an entire “team” assigned to him: his doctor, case manager, physical therapist (for mobility issues, like sitting up, transferring between surfaces, rolling, and also for working on his lower body (keeping it flexible)), occupational therapist (for functional issues – learning how to bathe, dress – the details of daily living – and strengthening his upper body), speech therapist (for learning how to speak with the hole in his trache), recreational therapist, counselor.
I got a homework assignment from the OT the first full day we were here: to do a house survey, where particulars about our house are filled in (width of doorframes, details about bathrooms and bedrooms, etc.). Based on this they will make recommendations for alterations that should be made.
Jumping to a new topic, Saturday Gary wheeled himself around for the first time, the trip being down to the gym on the second floor (he’s on the third). So he had to maneuver down the hall to the elevators and then to the gym (the PT told him he should do all the driving himself, not to let others push him – needs to build up those muscles). To get into the chair from the bed, and from the chair to the gym mat, he was lifted by a device the nurses call a “hoyer,” maybe named after the manufacturer :-). He lays on a “net.” Hooks then go into eyes on the net on both sides of his shoulders and hips. He pushes a control button, and the hoyer lifts him. Then he lowers himself onto the chair (or mat). The PT gave him arm and shoulder exercises to do – bicep curls, flyes, tricep extension. I loved lifting weight when I used to be able to. I loved it almost as much as swimming. So when the PT walked over to the other mat to help someone else, I couldn’t resist correcting Gary’s form, telling him to slow down so he was using the muscle and not momentum, that quality was more important than quantity, telling him how he should be breathing out on the exertional phase, informing him when he had miscounted and still had more to go (cheater! ;-)). The PT told me I should have been a PT. Gary told me I was a hard taskmaster. I said he probably wanted to fire me, but he said no, it was good. He is supposed to do his arm exercises twice a day. Even if he has the skin flap surgery done on his bed sore, which will again render him on his back for at least two weeks, he is supposed to continue with the arm and shoulder exercises. Building these muscles will be vital for his rehab. We are expecting him to be quite buff by the time he goes home ;-).
Today, Sunday, he was more active in the chair. He wheeled down to a Sunday service on the third floor for the singing, then we went down to the first floor and outside to the garden they have here. They had a ramp down from the door of the building to the garden level, and I had to hang onto the wheelchair so Gary wouldn’t go flying down it. I almost lost him in the bushes (just kidding – though I did have to hang on tight). The garden was a very small area – I had been hoping for something larger. While we were there, a person came around with a dog, a black lab. She was from “Canine Assistants,” which trains dogs for people with mobility issues – the dogs open doors, pick up items, pull wheelchairs, go for help, turn on lights, etc., and the service is free. She said the dogs came with eighty commands, which made me laugh, since it made the dogs sound like programmable machines. That impression was reinforced when she said the dogs could then be customized to their owners’ needs. Gary asked how they do with cats, and she assured him that the dogs were raised with cats and so took to them very well. I couldn’t help saying, yeah, but I doubt our cats would take to a dog. She said the dog would so identify with Gary that the cats wouldn’t think of it as a dog, but I am dubious. Besides, I don’t really want to take care of a dog (not to mention I am afraid of them, though I’m sure the ones chosen wouldn’t justify any fears). Of course, if Gary really wants one, I wouldn’t deny him. (I just asked him – he said he’d rather try to get along without one first, but it was a nice program.) We left the garden after a little while, Gary not quite able to make it up the slope of the ramp on his own – but all I did was prevent him from going backwards, not push him up it. (There’s a reason he calls me a hard taskmaster – he later said, “I see you took those words to heart about not pushing me in the wheelchair :-).) We then went along the hall on the first floor where they have pictures of various people up. I still haven’t taken the time to see exactly who these pictures are of, but I recalled seeing one of Christopher Reeve, so we went looking for it. We found it – it was a poster for the ’96 Para Olympics which were held in Atlanta. By this time Gary had been active for two hours – definitely more active than he’s been at any time in the past five weeks. So we went back to the room, and he turned on the TV and watched golf. I got out the laptop and am composing this, later to be sent out as emails and put on the blog.
For some reason meal times are crowded together today – we’re not sure if it’s because it’s Sunday. Normally he’s been having breakfast around seven, lunch at twelve, dinner at six. But today’s breakfast was at 9:30, lunch at 11:30, and now dinner is here at five! They are really pushing protein on Gary – fish/meat at every meal, plus ensure, plus a protein drink – they say this will help heal the bedsore. But we are not usually impressed with the meals (I in particular raising an eyebrow at it). “Southern cooking,” Gary declares it. Fried steak, stuff smothered in gravy, tough, overcooked veggies. The beef they gave him for lunch was so tough he could hardly chew it. Fortunately we still had some salmon from the kabob in the fridge, so Gary had that, and I reminded him that I would get him whatever he wanted from elsewhere and cook it for him if he so desired – I think good nutrition is supremely important right now, though of course he and I are not always in agreement as to what good nutrition is ;-).
He has to be very careful and concentrate with his chewing, because they saw signs that some of his food is going down the wrong tube and ending up in his lungs. This could cause an infection. Everything is such a balancing act. If he has the surgery for the bed sore, he is supposed to lay flat for the incision to heal properly, but the respiratory people don’t want him lying flat because of breathing and eating issues – we’ll see how they resolve this dilemma if it comes to that. And for bladder issues first he was on a foley and now they do “ic’s” on him (incentive catheterization (sp?)), which he will be doing to himself, once his finger heals up. But now he has a bladder infection, I assume from having those tubes in him.
Speaking of that bed sore, it is amazing to us the trouble it causes. If he has the surgery, it turns out it will affect how he is able to take care of other personal issues for about a year. And he will have to be vigilant to make sure it is healing properly and doesn’t return.
And we still have the breathing issues. Because of the damage to his lungs during the accident and also probably due to all the various breathing tubes he had to have in him during this ordeal, he still has problems with congestion. He has been getting breathing treatments every four hours, as he did at B’ham.
Oh, I haven’t mentioned his hearing in a while. It seemed to slowly improve at B’ham. They tested him again the day before we were to leave B’ham (no doubt not wanting Shepherd to think they hadn’t followed through ;-)), and found him to be on the edge of normal. They still think it will completely clear up once he is more active. At least I don’t have to yell anymore, just have
to raise my voice slightly above normal.
Another thing that will come into play that we hadn’t realized is temperature regulation. Evidently his body won’t do that so well, so he may need to layer clothes, or at least to bring jacket with him when he goes to school, etc. They said even in hot weather, sometimes people like him find they might suddenly need a jacket for a while.
And to finish, some parting lessons I learned at Walmart in Birmingham: 1)Their instant ice packs are worthless – you will get a hernia trying to crush them so as to release the magic crystals. 2) If you are a woman and you accidently walk into the men’s room, it is best not to emit a loud “oops.” And if you do, be like me – stay in the women’s room extra long so as to avoid meeting up with anyone you accidently got too personal a look at.
May 20, 2006 (2:10pm)
I think that when Gary was worse off and I wasn’t with him as much, my writing of the emails/blog might have been more coherent. Now that I’m spending more time with him, I have time only for snatches of writing here and there. So if you’ve noticed a decrease in quality, that is why. (Or so I’ll say ;-))
Okay, catching up on the last mail we got at B’ham. Thanks to Mom Gruenhage, Beth Fletcher, Lois Staving, the Barjenbruchs, and Wanjun Hu.
And I would like to mention the email from Bob, Gary’s younger brother – I hope Bob won’t mind. It was very sweet. Bob mentioned how one time when both he and Gary were living in California, Bob got mad over some trivial thing, and Gary told him not to get mad, but to solve the problem. Bob said he always remembered that, that it helped him, and how he could see how Gary still lived by that. I was reminded of Bob’s email yesterday, when the counselor assigned to Gary came by to meet Gary and tell him they had an appointment scheduled for some time next week. She asked if Gary had any questions, or if there were any issues he wanted to discuss. Gary told her he thought everything had pretty much been covered – then later worried she might not appreciate the way he had put that, indicating she wasn’t necessary :-). I told him that it had seemed to me he had taken this pretty well from the beginning, and asked if that was really the case (since communication had been somewhat limited there for a while). He said maybe he was kidding himself (I don’t think he is), but he felt he had accepted that this was the way it was going to be, and that the only thing to do was to make the best of it. I mentioned how I had felt that it was useless to ask the why’s because I felt there was no answer (at least that I could comprehend). He said even if he knew the answers to why the accident had happened, it wouldn’t matter because it didn’t change how things were.
Broadening that from this specific instance to a life-view, that has pretty much been my guiding philosophy for years now – beliefs, understanding, *in a sense* don’t matter – it’s how you live your life (I put “in a sense” because I know there are those who would argue that it is beliefs and understanding that guide how life is lived).
Besides a counselor, Gary has an entire “team” assigned to him: his doctor, case manager, physical therapist (for mobility issues, like sitting up, transferring between surfaces, rolling, and also for working on his lower body (keeping it flexible)), occupational therapist (for functional issues – learning how to bathe, dress – the details of daily living – and strengthening his upper body), speech therapist (for learning how to speak with the hole in his trache), recreational therapist, counselor.
I got a homework assignment from the OT the first full day we were here: to do a house survey, where particulars about our house are filled in (width of doorframes, details about bathrooms and bedrooms, etc.). Based on this they will make recommendations for alterations that should be made.
Jumping to a new topic, Saturday Gary wheeled himself around for the first time, the trip being down to the gym on the second floor (he’s on the third). So he had to maneuver down the hall to the elevators and then to the gym (the PT told him he should do all the driving himself, not to let others push him – needs to build up those muscles). To get into the chair from the bed, and from the chair to the gym mat, he was lifted by a device the nurses call a “hoyer,” maybe named after the manufacturer :-). He lays on a “net.” Hooks then go into eyes on the net on both sides of his shoulders and hips. He pushes a control button, and the hoyer lifts him. Then he lowers himself onto the chair (or mat). The PT gave him arm and shoulder exercises to do – bicep curls, flyes, tricep extension. I loved lifting weight when I used to be able to. I loved it almost as much as swimming. So when the PT walked over to the other mat to help someone else, I couldn’t resist correcting Gary’s form, telling him to slow down so he was using the muscle and not momentum, that quality was more important than quantity, telling him how he should be breathing out on the exertional phase, informing him when he had miscounted and still had more to go (cheater! ;-)). The PT told me I should have been a PT. Gary told me I was a hard taskmaster. I said he probably wanted to fire me, but he said no, it was good. He is supposed to do his arm exercises twice a day. Even if he has the skin flap surgery done on his bed sore, which will again render him on his back for at least two weeks, he is supposed to continue with the arm and shoulder exercises. Building these muscles will be vital for his rehab. We are expecting him to be quite buff by the time he goes home ;-).
Today, Sunday, he was more active in the chair. He wheeled down to a Sunday service on the third floor for the singing, then we went down to the first floor and outside to the garden they have here. They had a ramp down from the door of the building to the garden level, and I had to hang onto the wheelchair so Gary wouldn’t go flying down it. I almost lost him in the bushes (just kidding – though I did have to hang on tight). The garden was a very small area – I had been hoping for something larger. While we were there, a person came around with a dog, a black lab. She was from “Canine Assistants,” which trains dogs for people with mobility issues – the dogs open doors, pick up items, pull wheelchairs, go for help, turn on lights, etc., and the service is free. She said the dogs came with eighty commands, which made me laugh, since it made the dogs sound like programmable machines. That impression was reinforced when she said the dogs could then be customized to their owners’ needs. Gary asked how they do with cats, and she assured him that the dogs were raised with cats and so took to them very well. I couldn’t help saying, yeah, but I doubt our cats would take to a dog. She said the dog would so identify with Gary that the cats wouldn’t think of it as a dog, but I am dubious. Besides, I don’t really want to take care of a dog (not to mention I am afraid of them, though I’m sure the ones chosen wouldn’t justify any fears). Of course, if Gary really wants one, I wouldn’t deny him. (I just asked him – he said he’d rather try to get along without one first, but it was a nice program.) We left the garden after a little while, Gary not quite able to make it up the slope of the ramp on his own – but all I did was prevent him from going backwards, not push him up it. (There’s a reason he calls me a hard taskmaster – he later said, “I see you took those words to heart about not pushing me in the wheelchair :-).) We then went along the hall on the first floor where they have pictures of various people up. I still haven’t taken the time to see exactly who these pictures are of, but I recalled seeing one of Christopher Reeve, so we went looking for it. We found it – it was a poster for the ’96 Para Olympics which were held in Atlanta. By this time Gary had been active for two hours – definitely more active than he’s been at any time in the past five weeks. So we went back to the room, and he turned on the TV and watched golf. I got out the laptop and am composing this, later to be sent out as emails and put on the blog.
For some reason meal times are crowded together today – we’re not sure if it’s because it’s Sunday. Normally he’s been having breakfast around seven, lunch at twelve, dinner at six. But today’s breakfast was at 9:30, lunch at 11:30, and now dinner is here at five! They are really pushing protein on Gary – fish/meat at every meal, plus ensure, plus a protein drink – they say this will help heal the bedsore. But we are not usually impressed with the meals (I in particular raising an eyebrow at it). “Southern cooking,” Gary declares it. Fried steak, stuff smothered in gravy, tough, overcooked veggies. The beef they gave him for lunch was so tough he could hardly chew it. Fortunately we still had some salmon from the kabob in the fridge, so Gary had that, and I reminded him that I would get him whatever he wanted from elsewhere and cook it for him if he so desired – I think good nutrition is supremely important right now, though of course he and I are not always in agreement as to what good nutrition is ;-).
He has to be very careful and concentrate with his chewing, because they saw signs that some of his food is going down the wrong tube and ending up in his lungs. This could cause an infection. Everything is such a balancing act. If he has the surgery for the bed sore, he is supposed to lay flat for the incision to heal properly, but the respiratory people don’t want him lying flat because of breathing and eating issues – we’ll see how they resolve this dilemma if it comes to that. And for bladder issues first he was on a foley and now they do “ic’s” on him (incentive catheterization (sp?)), which he will be doing to himself, once his finger heals up. But now he has a bladder infection, I assume from having those tubes in him.
Speaking of that bed sore, it is amazing to us the trouble it causes. If he has the surgery, it turns out it will affect how he is able to take care of other personal issues for about a year. And he will have to be vigilant to make sure it is healing properly and doesn’t return.
And we still have the breathing issues. Because of the damage to his lungs during the accident and also probably due to all the various breathing tubes he had to have in him during this ordeal, he still has problems with congestion. He has been getting breathing treatments every four hours, as he did at B’ham.
Oh, I haven’t mentioned his hearing in a while. It seemed to slowly improve at B’ham. They tested him again the day before we were to leave B’ham (no doubt not wanting Shepherd to think they hadn’t followed through ;-)), and found him to be on the edge of normal. They still think it will completely clear up once he is more active. At least I don’t have to yell anymore, just have
to raise my voice slightly above normal.
Another thing that will come into play that we hadn’t realized is temperature regulation. Evidently his body won’t do that so well, so he may need to layer clothes, or at least to bring jacket with him when he goes to school, etc. They said even in hot weather, sometimes people like him find they might suddenly need a jacket for a while.
And to finish, some parting lessons I learned at Walmart in Birmingham: 1)Their instant ice packs are worthless – you will get a hernia trying to crush them so as to release the magic crystals. 2) If you are a woman and you accidently walk into the men’s room, it is best not to emit a loud “oops.” And if you do, be like me – stay in the women’s room extra long so as to avoid meeting up with anyone you accidently got too personal a look at.
posted by Peg Daniels at 3:10 PM
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