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hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
My dad has been using a wheeled walker for about two years, but he is likely to need a wheelchair sometime in the near future. I took him in to try some out, and it seems he will need many of the so-called optional features, like recline (not just tilt), special cushions, and a curved headpiece that will keep his head from flopping around. He may also need the computer screen on a swing arm that can be positioned so he can see the functions easily to control the chair. He was disturbed at the mounting price with all these options, and is worried that medicare might not pay for them. Does anyone have some experience with this or some advice about what options are really helpful? We were also told that the wheelchair would not be approved by insurance until he needed it to get around inside the house (even though now he can't walk more than a quarter of a block without sitting down to rest), that not getting around in the outside world doesn't count. The problem is, it may take some time to actually get the chair when he really needs it inside too. Has anyone been approved for a chair before it got to that critical point? How did you go about it. Also, any advise about types or brands of chairs is appreciated Thanks.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi there hboyajian. Here is a site called wheelchair junkie. I've looked on there a couple of times and it seems to be a site similar to ours but with people with all different reasons for being in a chair and lots of information. Might be more than you want but take a look anyway. I'm sure some of the others here that are using chairs will be able to offer advice. AL
http://www.wheelchairjunkie.com/cgi-bin/ultimatebb.cgi?ubb=forum;f=3
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
When I went to the ALS Clinic yesterday they signed me up with the MDA and told me one advantage of this is that the MDA will contribute up to $5000 towards the purchase of a wheelchair. Has anyone out there heard of this or benefitted from it? It seems that getting registered with the ALSA and MDA are very important steps to take.

Liz
 

Bill60

Member
Joined
Nov 29, 2006
Messages
19
Reason
PALS
Country
US
State
Texas
City
Willis
When I got my first power wheelchair about 9 years ago, my OT and PT recommended that their ALS patients used Permobil wheelchairs. I am now on my second permobil and I would highly recommend them. I'm in my wheelchair from 7:00am until I go to bed around 10:00pm. It is comfortable, more than a recliner... Because it has more support and I don't slip down like I do in a recliner. It has power adjustable footrests, recline... And, you can order a mounted swing out tray for his laptop or computer monitor. The only thing I don't like, but it's a problem with most wheelchairs, is that the seat and headrest are vinyl which isn't very soft and it can be hot in the summer and cold in winter. I solved this problem by purchasing a memory foam mattress pad online; my wife then cut pieces to fit the seat and headrest. I then bought a cheap cloth car seat cover to put over the foam and keep it in place. Now I'm very comfortable.
Do not allow your insurance or Medicare to bully you! He needs the chair now. Even if he can still walk with a walker for short distances, that can be dangerous because he could fall like I did many times with my walker. It's also very tiring using a walker to get around. A power wheelchair just makes life easier for the patient and caregivers.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good advice, Bill. I meant to tell you how impressed I am that you've been a PALS for all this time. Your exprience offers hope to everyone!
 

Bill60

Member
Joined
Nov 29, 2006
Messages
19
Reason
PALS
Country
US
State
Texas
City
Willis
Thank you Cindy. I only wish that I could tell everyone the secret to surviving a long time with ALS, but I think there are many factors that no one fully understands. Besides being in excellent health (didn't smoke, drink, take drugs..., wasn't overweight) when I was diagnosed at the age of 35, there are clearly other things that I'm convinced help people with ALS and everyone to live longer and enjoy a better quality of life. I think faith in God and eternal life is vital, in my opinion. Thankfully, I was a devout Christian long before ALS entered my life and my faith has grown alot stronger since then. I don't get out of the house very much anymore, but I virtually never miss going to church on Sunday and I have the Bible on my computer so I'm able to read it every day. I'm sure there are people with ALS that feel satisfied without having any faith for eternity... I hope I'm not offending them, I'm simply saying what works for me.
 
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