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When is it time to start using a wheelchair?


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#1 Carolynn

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Posted 18 March 2007 - 06:39 PM

I'm posting this in both forums in case there is someone who doesn't visit both of them who might respond.

Recently, my DH has developed more and more freezing and very slow walking. Although I have been committed to keeping him walking, sometimes I don't have enough patience for the incredibly long time it takes for him to get from one end of the house to the other (it can take 5 or 10 minutes, even with me pulling him along, coaching, etc), because on the days this problem is really bad, he seems to need my assistance to make any forward movement at all (other days-or parts of days--his movement is more fluid, and he can walk unassisted). He doesn't want to use a wheelchair and is uncomfortable
sitting in one (mostly because of back pain but also because his
hunched posture makes it difficult for him to breath, swallow, etc.). He is only really comfortable sitting in a semi-reclined position.

His meds seem to be as optimized as they are going to get--any
increase in Sinemet (the regular kind) turns his tremor into violet shaking and is unbearable, and he never has the classical "off" episodes. When he can't walk unassisted, it's more because of lack of the abiltiy to make coordinated forward movement, not rigidity. He can't tolerate dopamine agonists.

I know that the more he uses a wheelchair, the weaker his legs will get. His arms and hands are pretty much incapacitied by
contracture/tremors/lack of coordination, so a wheeled chair would have to be pushed by me (he couldn't control any sort of power chair I have seen). Any suggestions from those of you who have been in my
situation?

Much appreciation in advance,
Carolynn

#2 NO1catlady

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Posted 18 March 2007 - 06:51 PM

Carolynn,
This sounds like something a good PT could help you with. If you have Medicare, a referral from your doctor to a PT that does home visits will not only provide an evaluation but about six weeks of twice a week visits for PT and OT evaluation and help as well.

Anne in Richmond
Anne in Richmond

#3 KB

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Posted 18 March 2007 - 08:01 PM

Carolynn,

A home safety evaluation plus a round of PT/OT home visits would probably be very helpful. I would expect that one recommedation they will make regarding use of a wheelchair will be to have the doctor prescribe a higher mobility chair and to obtain a gel cushion for the seat. There is such an amazing array of assistive accessories available these days, there is probably a special cushion or padding that would help keep your DH more comfortable when he needs to use a wheelchair. A PT can also train both of you to make safe transfers (such as wheelchair to recliner) and to show you how you can safely help if he has a fall.

I have been through a similar transition with my father over the past three years. He can take ten minutes to ambulate with his rolling walker from his recliner to the bathroom, covering a distance of about 20 feet. Sometimes I gently pull from the front of his walker which can break some freezes, but I watch carefully to be sure that I do not pull him off balance. He can't tolerate the dopamine agonists either and at this point his Sinemet response is uneven at best. I try to encourage him to use his walker when he is steady enough but will swoop in with the wheelchair when he gets too shakey (weakness and lack of balance, not tremors).

At first we only used the wheelchair for traversing long distances such as medical appointments in large hospitals. Gradually he began using the chair for shorter errands out and now he only uses the walker in the house. We went through the same long, gradual transition with my mother.

As long as he can still stand and walk safely with his rolling walker I will nudge him to do so. I try to get him to walk a little extra whenever he intends only to go to the bathroom. We started with home PT visits and followed the recommended exercises for some time but as his condition deteriorates we have dropped off a bit. Now he is most compliant with exercises done seated or lying on his bed.

You instinct is absolutely correct -- use it or lose it, as far as mobility goes (cognition as well, but that's another story). Compromise on both sides will be best at times. When you are pressed for time, a wheelchair will reduce anxiety and stress for both of you. Sometimes it will be best if you just suspend your own impatience and let DH take his time. Try leaving the room if you must; that can be a great coping device unless you absolutely must be at his side for safety. My father also sufferes from lack of coordination combined with rigidity and has great difficulty working his wheelchair. He is even slower moving himself in his wheelchair than with the walker, but I know he won't fall so I let him be the tortoise unless I really need him to move quickly, then I push.
Caregiver for parents since 1993
Father (now 85), PD dx 2000, dementia by 2003
Mother (d. 2004 at 87), dx LBD 1998, later dx AD/Vascular Dementia

#4 Carolynn

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Posted 20 March 2007 - 12:09 PM

Thanks everyone for the great info. Due to your encouragement, I've ordered a transport chair that can traverse uneven ground and have promised Roy short trips to open-air concert events, the local baseball games, his favorite store, Home Depot, and to our local river-side park as inducements to get him used to taking advantage of wheeled transport other than the car. I also ordered all the comfort options I could find. I'm determined to get him out of this house and into somewhat social situations more. With him, I find I have to use the "slow-drip" method to introduce anything new.

Carolynn





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