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patoyeah

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Joined
Mar 30, 2016
Messages
249
Reason
PALS
Diagnosis
11/2012
Country
US
State
NJ
City
Dover
we are behind in getting equipment for als / paralysis.

i spent the first two years of this, researching and trying experimental treatments. my wife and i went to Thailand for 7 weeks chasing stuff. drove out to Colorado, spent 7 weeks there, chasing stem cell.

my body continued losing function. we realized, we need to get prepared, we may not stop this als.

we realized, we need to move. we lived in North Jersey, in a small, tight 2 floor Colonial. it would not accommodate a wheelchair, or much equipment. we decided to find a ranch house, not many of these in North Jersey; took some time.

we bought a ranch house, renovated it, moved, sold first house and in that time als kept busy also. i was unable to communicate for 9 months, till i got this tablet, a few months ago. i have enough paralysis to be bedridden since October.

we have been using a loaner chair, that does not tilt. we went for a wheelchair fitting yesterday at Hellen Hayes Hospital.

we were understandably told there is no way for me to control a power chair, therefore medicare will only cover a manual chair. unless we can justify to medicare, that my wife needs a power chair to move me around. i am about 140 pounds, so we can not use my weight as a reason for a power chair.

for folks that are fully paralyzed, how often do u use a wheelchair?

is / would a power chair be helpful?

might a manual chair make sense for us? it is very hilly, where we live.

i am guessing, that i will not use a chair much, since i can not control a power chair.

we will decide soon. input appreciated.

morning,

pat
 
thank u Ells, if we go with a new power chair, for medicare to cover it, it needs to be justified that my wife needs a power chair to move me. they will not normally cover a power for a user that can not control it.

how often do u use a chair? do u still have any function in your body?

thank you,

pat
 
also they will not accept eye control of a power chair, according to Hellen Hayes Hospital.... eye control at this point is all after-market tricks.
 
Pat, my husband has no use of his arms and hands. He was evaluated for a power chair and they tried foot controls which amounted to a small ball on the footrest. He had great difficulty with this, probably because he has significant weakness in his legs and very large feet. They then tried using his chin to control the chair, which also was very difficult for him due to neck weakness. We requested a manual chair which is working well for us. It is very easy for me to maneuver and comfortable for frank. It has a tilt feature to permit shifting of weight to prevent skin ulcerations. This chair is not collapsible and too heavy to transfer in a car but my husband very seldom leaves the house.

We also have a power chair that was loaned to us by the MDA while waiting for the manual chair. We seldom use this because Frank can't use it on his own. I have to control it with the joystick on the armrest, which is especially difficult when going through doorways.

I know most PALS have a power chair and will probably suggest you go that route but this is what works for us.

Sharon
 
I spend most of the day in a pwc. I've no hand function but can semi-grip the joystick and have just enough shoulder movement to move the joystick control to drive the chair.

I also have an attendant control on the pwc, should anyone need to drive it.

I'm sorry u have to jump thru hoops to get one, when one is provided easily & quickly for me!
 
Pat,
Medicare will absolutely pay for a power chair with an attendant control given appropriate justification of your wife's inability to maneuver the manual wheelchair on your hilly terrain and in transfers.

And you need tilt, recline, elevating leg rests. ALS fully meets the requirements for each. Whether you go out a lot or not, you need a fully-loaded power chair for positioning when you are home. If your DME doesn't get this, find another.

But even if you for some reason can't get an "attendant control" funded, if you get a power chair with a "regular" joystick on the right hand side if you are right handed, your wife can operate it from the side, which would work fine for positioning purposes, and it can be moved to the back later if she prefers that.
 
Just want to add that your doctor can fight with any insurance provider, including Medicare, to get whatever you need. The doctor might have to write a letter or make a phone call, but it's worth it.
 
All the people with no limb use in my local chapter have a PWC with attendant control. Their CALS load them in and out of vans....it's the ONLY way. Two of our guys sleep in their PWC because the companies did such a good custom job that they are more comfortable than their beds. ABSOLUTELY get a PWC. Even if you only "take walks" with your wife. If you are going to a local neuro who isn't a clinic doctor, he or she might not know the proper wording for Medicare to cover everything you need. Call a representative from one of the PWC Companies or authorized DME equipment dealers. They will know the correct wording.

Call your local chapter ALSA for assistance.

I met a PALS last week who uses a fancy head brace to control his PWC.
 
attendant controls are wonderful.

My Chris weighed around 50kg but it was always easier to walk behind with attendant controls than push a manual chair. I would go for that as it will open up your world even just to be able to go for walks with your wife :)
 
You absolutely need a PWC. I got mine while I could still control it but that doesn't matter as many have previously said. Your wife cannot be manually pushing you around, especially on inclines. Loading in and out of a vehicle is also nearly impossible without power. And you do need the power seat adjustment controls for tilt, seat back angle, and leg rest lift. Be firm and demanding, otherwise you will get snowballed by the agencies.

Eyegaze-controlled drive is not very useful in the sun. I know a few groups working on eyeglasses-style drive systems but they aren't ready for release.
 
And you do need the power seat adjustment controls for tilt, seat back angle, and leg rest lift.
and the seat elevator. Needed to reach things on shelves, etc.
 
Not only that Greg, but so much easier for CALS to do foot care if they don't have to get down on the floor - elevator and tilt make all that so much easier!
 
Excluded that since Pat is fully paralyzed at this point.
 
Excluded that since Pat is fully paralyzed at this point.

Doh!

That blows my justification, but Tillie's still stands.
 
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