My husband started slumping in his chair and leaning off to the right a couple of weeks ago. It has gotten so much worse. He's going to be laying on his side before too long. I Know others are dealing with this. He's very stiff and I can't push him back into place. Even if he manages to move a few inches, he slips right back into the lean. It's uncomfortable for him and he feels unsafe like he's going to fall out of the chair. And when he's on the Sara Stedy, I am concerned because he's leaning way out on one side. He has to work at getting his hips in far enough to put the flap down on the Sara Stedy.
His body is just getting worse all the time. Fortunately, his mind is good. And no swallowing issues. Maybe we'll bypass the swallowing issues??
Every time something new comes up, I go into problem solving mode and come up with a new idea or a new piece of equipment and we go along fine...for a short time. Those times of cruising along seem to be getting shorter.
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journeyofjoy
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The nurses padded my hubby down the weak side with pillows. One pushed right down by his hip, another along the arm and a third vertically along and behind his back.
It was not terribly successful always!
I would talk with the Physio occupational therapy people and see what they can come up with to stabilise your man. Don't know if a brace of some sort around his back would help.
I would talk to him too since you can, as he might have some suggestions and feedback on comments.
Must be very frustrating for him! It is probably the muscle control not working in the brain. Was problem my hubby had. I was the one who had the ideas of support; he wasn't doing a lot of thinking at the time, and was never a practical individual!
Another thought! My grandson suffered temporary paralysis and was in a wheelchair for a while. He fell forward from the waist. This was sorted with a waist strap at chest height while he was in the wheelchair. Otherwise he made sure he was seated leaning a little backwards, say in a Lazyboy chair.
Then there are those who say you should not restrict/restrain the patient!!
Thanks Jen. We tried the pillows. His body just smashed against them. Didn't seem to be of much help. He leans so far to the right and his left leg raises up and floats in the air. For the first time, he had trouble eating tonight. Hard to hold his spoon while so lopsided.
There are harnesses which fit behind the chair. They needn't be too restrictive.
There are some which can be fitted to wheel chairs.
The OT should be able to help out here.
The alternative is to get an armchair which gives more support. There are special reclining ones that wrap around the body more than an ordinary chair. They can also have upholstery which go some way toward preventing pressure sores. My Liz slumps a lot and the nursing home uses one of these on the day's she can get out of bed and it works well. They usually have handles on the back too, so they can be used like a wheelchair in the home.
I’m so pleased that he doesn’t have swallowing problems. There are quite a few here who never developed them. Good luck.
Larry is the same. I try to wedge him into the side of the chair with arms he slumps towards. He still slumps. Seems to be one of the disease manifestions. I tried pillows. Didn’t help much.
After the old bag started leaning we were able to get a Kirton tilt in space chair via the Ot. It has high arms, adjustable head and side pads. After using it for some time her posture improved. You have to be quite forceful with the Ot and steer them in the right direction.
My husband has a fancy "tilt in space" wheelchair with al the gadgets. It's wonderful for taking him out to the doctor and occasionally to church or a ride around outside. We don't use it in the house anymore. It's powerful and he cannot drive it himself. Can't let go of the joystick when necessary so he runs into things. I have an attendant control so I can drive it for him. Yup, I am the backseat driver.
I am sorry for this new challenge of slumping, but REALLY GLAD that he has not been afflicted with swallowing problems. My son never suffered from slumping, but early on from swallowing and all it led to...............
I don't know if what we do is helpful, since it seems each sufferer is challenged in different ways. My husband is not stiff, that makes all this easier, I know. But here I go...Before my husband gets up in the morning I massage his back to both loosen his muscles and stimulate the nerves. Then modified yoga stretches. Since his right side ataxia means, I believe, that the right side is weak, I make sure he works his right side core muscles with extra reps. We follow with some neurogenic exercises to encourage neuroplasticiy. I found a round pillow he uses in his wheelchair. But if he starts to slump, I will force him up. I want the brain to remember what is the proper position. He once said he could do it, but it took work. He use to run marathons, so I remind him he is running a different marathon, but the training is just as important. You might suspect that today was a good day. He sat up properly, head up, breathing through his nose. It makes me misty-eyed and hopeful.
You are such a loving caregiver to your husband. Having been a marathon runner, this must be especially difficult for him to have this disease.
I find it difficult just to get my husband's basic needs taken care of. Usually takes 1.5 - 2 hours just to get him up, to the bathroom, dressed and ready for breakfast. It's different for everyone, it seems. All of our loved ones are in different phases, with varying degrees of difficulty. I actually think my husband looks fairly healthy. His body is failing but mentally he is doing well. My view of things is probably not very accurate though. When we're in the middle of this, we just keep adjusting, thinking it's not that bad but if I compare our lives to what they were a year ago, it is very different. He is much worse and I am doing everything to take care of his needs. It wasn't that long ago that he asked me to help him button the small buttons on his shift cuffs. Now he can't dress himself or help himself with anything. It's so hard to tell where we are in this journey. I wish I knew more about the timeline.
Thankfully, I am nine years younger than my husband and healthy.
We have had this awful slumping the last couple of days from about four o'clock till bed at seven.Makes feeding him difficult and as you say almost impossible to wedge up with cushions .My two daughters have arrived and very upset at Dad's decline in the last 5 weeks.Has anyone used a Kirton chair?
As said above the old bag has one with all the anti pressure cushions and support pads.In hospitals they use them for stroke patients.I sat on it once and it is comfortable.
Mary was measured for a wheelchair which has removable side supports which are padded and they hold her upright but can be a bit firm and I worry about her skin. The nursing home have tried supporting the non leaning side when she's in a chair because they think it might have something to do with how her brain is now wired and that she leans that way because she feels insecure. It seems to help. It can't hurt to try it.
I have found that this is a sign that he has a bit of a decline coming ,it last for a few days and what ever the dam disease gift is going to give us usually shows up,bonus he improves a little bit.
Hang in and being a step ahead is always a thing.
Dee in BC
TIP
Buy a extra large t shirt that fits over him as well as his chair,slip over both.my husband sits in a computer chair all day long and it works.
John goes to one side but it does vary from day to day as sometimes particularly if he is in an armchair he can be more upright. If it is a bad day cushions only help for a few minutes. You are fortunate he does not have any swallowing problems. Even though you are younger just take care of yourself x
How I empathise. Mum varies in her degree of lean from day to day but on a bad day she is like a boomerang shape and feeding is very difficult. The Physio have said it's a combination of the brain not being sure where the body is, so not knowing it's bent, so doesn't try to straighten and secondly being right dominant, so the right side does all the work, the left side becomes weaker so the right side does even more. We've been given some core strengthening exercises to do where Mum sits as upright as she can and reaches forward with one arm at a time, also standing with her walker and getting her weight evenly distributed over her feet, then trying to let go with her right arm - we're not very successful . Mum also finds it very hard to keep her feet apart, they both want to inhabit the same space and this is the inner thigh muscle (adducter) being dominant over the outer thigh muscle (abducter), which is not uncommon but difficult to correct. The Physio is now giving up on us as they are a rehab service not a maintenance service, very frustrating when you know that the more mobile we keep Mum the less of a strain she will be on our over stretched NHS. Heyho.
My husband leaned almost from the beginning--for at least 4 years! Never found a solution other than pillows which just made the lean a little less. We used very firm pillows, not bed pillows, but decorative pillows. We forced them along his side and let him lean a little onto them. He seemed to prefer to lean and never complained that it was hurting him. It definitely bothered me more than it bothered him. We had the same problem with the stand assist device. However, he never fell out of it, he pretty much kept a death grip on it. I just had to be careful that he didn't hit his head when we went through a doorway!
The inability to tell when he was actually upright was always frustrating to me because he wanted to argue about it. I think CBD oil helped some with the stiffness. If you haven't tried it, it may be worth a try. I wish we had tried it earlier. By the time we did try it, he wasn't talking anymore. It helped him get out an occasional word or two and also improved his appetite.
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