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Bella77

Active member
Joined
Jun 16, 2011
Messages
36
Reason
CALS
Diagnosis
06/2011
Country
US
State
Michigan
City
Fenton
Can someone answer this for me, isn't it smarter to get the manual wheel chair and when we need the power chair medicare will pay for that?
My husband was diagnosed last September, he cannot be understood, has a suction machine and a cough assist machine has to wear a brace on right side because his foot drops, walks with a cane, right side is very week and has lost muscle ton. This is all going at a greater speed than we ever imagined.

WE need our bathroom redone, a ramp built and we are not rich!
 
The manual wheelchair could be very fatiguing for your husband to use and as the weakness progresses he won't have the strength to push it. Medicare will only pay for one W/C about every 5-7 years. The PWC is expensive. I beleive the list price on mine was about $27,000.00

We've been using a small transport W/C that folds easily to put into the trunk of the car when we go out. I use the PWC around the house and neighborhood only until we're able to purchase a van that will accommodate it. The transport chair was only about $125.00 which we paid for out of pocket. It may take a few months to get the PWC so it really does need to be ordered before it's absolutely essential. Check with your ALS Clinic. Ours had a vendor on site to measure for fit and to consult with my PT on what bells and whistles would need to be ordered. I wish that I had gotten the "elevate" feature. It would have made it easier for me to function a bit longer in the kitchen and reach the sink faucets, etc. Down the road it would have made transfers easier on my CALS. I'm finding that the tilt and recline feature really helps with the discomfort I feel in my back if I sit upright for more than a couple of hours. My trunk muscles are already being affected by the ALS.

Check with your social worker or the local Office for the Aging for a local community agency that may offer grants for remodeling to promote independent living. There may not be enough funding to do a complete bathroom remodel but it may offer enough to help with ramps, handrails, and a hand held shower. There is an application process and financial screening and you may have to pay a certain percentage of the cost. Our local Office for Independent Living asks for 10% and has a 6-9 month wait for assistance once the application is approved because of the volume of need in the area.
 
That is what I am doing...buying manual and waiting for pwc from insurance. My manual one I am getting though is an Ultralight folding version which is only 20 pounds all put together...so it will be easier for me to push longer even with some loss of strength. Maybe though since he is already weak in arms getting a 'huvaround' , scooter, or other like pwc that is not real expensive.
 
Wow! $27,000 - really? 20% of that is 5400, the copay for medicare. i guess i'll be sitting at home a lot...
 
Bella, you should go ahead and get the ball rolling on the Power chair--it can take some time to get and while your hubby is walking still that could change quickly. if you wait until he NEEDS it--the wait will seem so much longer! We bought a scooter on line before the PWC, my husband loved it and it was only a few hundred dollars. We were able to sell it after he could no longer use it and recoup about half of the money.

Another thought--buy a used wheel chair on this forum or on ebay. prices are negociable and sometimes lower than your deductible.
 
Had I known I would have bought my polyfly out of pocket since medicare pays for 1 wheel chair in 5 years. I would have gone a step down to save money. BUT...My problem is narrow halls, doorways, no way to take a pwc in my 1986 thunderbird. My legs have flaccid paralysis, I have atrophy of the lower back. Fractured a vertibrae flipping and twisting backwards and am in extreme pain and chairbound.

But thankfully my upper extremities and bulbar still work, my FVC is 77% (after a week of having the flu).

My clinic wants me to have a seating asssessment done and the chair to have raised seating and raised arms, some kind of tilting feature added to my manual chair. I've called all around and can't find anybody who does this.

:sad:Should have gone for the pwc with a small manual out of pocket. I got some of my stuff from ALSA loan closet. They had a nice "baby" w/c that fits through most doorways.
 
Bella,

You can find those lightweight wheelchairs at C V S, Ri te Aidand Wal greens. And they are really inexpensive. Last time I looked, they were about $129.00 on sale. Some stores you may have to order but it doesn't take that long to get.

And for anybody else, they also carry the walkers with the seat and handbrakes at the same cost.

And like others have said, order that PWC now. You can always use the lightweight one if you could push him (if he doesn't have the arm strength) until you get the good one. And have you thought of a hoyer lift? Doesn't hurt to get one of those a while. I believe with insurance or medicare you "rent" it for like nine months and then it is yours. And it doesn't hurt to practice with it. And you can get the sling with a hole for the bathroom. Good Luck with your future purchases.

Prayerfully,
 
What is a seating assessment? I can get a hoyer lift,
 
Bella 77, definitely get your PWC ordered ASAP. Also contact the nearest ALS clinic or your state ALS organization and see if they have a loaner closet. I used a loaner wheelchair for about four months before I could get my pre-fitted chair. Also, I have a Hoyer lift from that loaner closet also. I'm in Tennessee.

Vickey
 
Sorry, I meant power wheelchair from the loaner closet. A blessing!
 
Can you answer another question for me? If he was fitted for a PWC and later his condition changed for the worse, and changes had to be made to the chair is that covered by Medicare, and are they able to make changes to a chair that has already fitted to someone? We"re going to clinic March 5th so maybe we can get a script.

He had me call The Scooter Store today, I don't think thats the way to go, but he wanted me to call them. She said they accomidate ALS patients. Are PWC super wide our doors are not real wide, I think they're 26" wide.
 
If your husband is being fitted at an ALS Clinic they will be well aware of the typical progression of the disease and order the PWC accordingly. My PT was on hand when the fitting was done and had input as far as what was ordered with future progression in mind. You can do a review of the archives about features of the PWC that other members have recommended and make a list to take with you to clinic.
We did have to remove the door frames and door stops to two of our interior doors to make it easier to maneuver the PWC.
As far as a scooter is concerned, your husband won't be able to use it when he loses strength in his trunk muscles. I'm grateful by afternoon for the tilt and recline feature on my power chair as my trunk is beginning to weaken. I got my chair in October.
 
Thanks, all of you have helped so much. I love this forum!
 
Bella, it sucks to be sick and poor. I know I'm one. My guy from a major city came to the house, assessed me, measured me, measured all my doors on the main floor and even steps to the porch to sidewalk. Portable aluminum ramps are the way we are going for our van. They run by the foot and for a mini van he said 4 to 5 foot. About 200 dollars. Also, due to budget cuts, MDA if you register with them, give you a 500 dollar medical/equipment purchase. That is going to cover our ramp plus may do one for the porch. But it's an old house (130 plus) and we were replacing the wrap around porch with horizontal decking boards and we have the big wide steps. I'm thinking decking boards for that ramp. Also, listed on my MDA Newsletter not magazine was a company that was willing to do free renovations. So we called and they won't drive the 35 miles from the big city of OZ. Uhm, not everyone lives there!

Oh, and we were told to stay 2 steps ahead of the disease. So think 3 or 4 years down the line for wheelchair. You only get 1 every 5 years. And be thankful you have medicare. I was a stay at home mom and so I don't qualify, so we're all BC/BS and self pay. Don't qualify for medicaid either. It just sucks.

Good Luck to You and Hubby,
 
For those getting power w/c evals, don't presume that the evaluator knows or cares about the dimensions of your home, even if the measurements are done there. Do your own and make sure that the max width of the whole package will fit through doors, down halls, etc. Consider the turning radius and how you will transfer from a mobile lift. If the w/c and/or lift won't fit in the bathroom, transfer in another room to a shower chair and/or commode.

As for paying for the manual w/c first, I would and did, if only to have something if the power w/c dies. My PALS never pushed the manual and he only drives the PWC a few feet, with a single finger tip. If, like him, your alternative switch options will be limited due to other conditions, order an attendant control up front. Every situation is different.

This has been covered in other threads, but just to reiterate here that you do want the elevate feature as well as tilt and recline. And don't presume (tonight's theme) that it will be included unless you request it.
 
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