Comfort and support devices

[Chris P]

Hello , my name is Chris and I'm new to the forum. I'm not sure if I'm doing this right or not ,I've never been a member of a forum before, but I'm looking for some ideas or suggestions for comfort in my chair. In the last two months or so I haven't been able to tolerate being in my wheelchair anymore because the disease has progressed to the point that I can no longer support my upper torso or neck and it's terribly uncomfortable. I was wondering if anyone else is dealing with this and what's working for you? I'm not ready to give up the freedom of getting around in my wheelchair yet and just staying in bed 24/. Anything you can offer would be greatly appreciated. Thank you.

 

[Nikki J]

Hi Chris. Welcome. Sorry you have to be here. You posted just fine but I am moving this up to the General Discussion area so more people will see it!

 

[zoohouse]

Hello Chris, welcome to the forum. My husband lost his core strength almost immediately so he must be supported throughout his body. His wheelchair has a seat back that cups his torso and he wears a seatbelt, and has a chest strap that he can use when he needs it. There are some really cool head rests that you can put on your chair that will support your neck and prevent your head from falling forward, or there are neck braces. I just google wheelchair headrests and look at the images until I find one that I am interested in and click on it. We did that to find leg supports for my husbands wheelchair that don't allow his legs to bounce around when he is on a rough trail. I hope you find what you are looking for.
Just noticed you are from Denton, my husband is from Lewisville.
Paulette

 

[Diane H]

If you got your chair through a wheelchair provider who measured you and ordered a chair with future needs in mind, go back to them and be evaluated for comfort issues to get the proper lateral supports and headrest. If you bought the chair on your own without a therapist's and wheelchair seating specialist's evaluation an input, well, you screwed up. Call your local MDA office and explain your situation. They will have you seen by a therapist and evaluated and the seating specialist will assist in ordering and fitting the supports. With the correct fit and equipment, your wheelchair should be as comfortable as being in bed!

 

[texastracy]

Hello Chris

I am a fellow Texan. I live in the Lubbock area. Sorry you had to join up, but it is a good place to be. There are several Texans here. Everyone is very nice and helpful. I've learned a lot by just browsing around in the different posts, even as far back as 2009.

Tracy

 

[Chris P]

Thanks for all the advice guys I really appreciate it. I just seem to always be choosing right when I should have gone left. I'm sure you guys have done the same. I got swindled I guess early in my diagnosis , well maybe not swindled I was the one who let it happen , but I was convinced early on to by a chair that wouldn't work for me three months after I bought it. And of course I used medicare to purchase it. Definitely screwed. So I turned to MDA and thankfully they provided me the best they could. The chair obviously isn't fitted for me , but they did their best. MDA here in Dallas are the best! We are barely making ends meet since my wife had to stop working to care for me full-time and we all know how hard it is with only social security and a family of six. Anything labeled"medical" is extremely expensive so I just don't wanna purchase something that is a piece of crap. Anyway thanks for any suggestions ,it is so appreciated.

Thanks guys

Oh yea... I grew up in Lewisville. That's crazy!

 

[jamesonmedical]

Nowadays various automatic wheelchairs are available in health centers. Normal chair does not have all the functionality to move easily it takes time but if you buy any automatic mobility device this will help you more because that device includes many new feature of movement comfortably.

 

[texastracy]

If you go to a MDA sponsored clinic, they have loan centers all over the USA. They loan things, including PWCs, to ALS patients. Go to the MDA website for more info.

Tracy

 

[FSHolbrook]

That is very good advise Diane. MDA or local support groups can be very helpful as are ALS clinics. I suspect that I will be investigation a pwc in the near future.

Rick

 

[ctk56]

Sorry to hear about your situation

Most PWC can be modified with additional support items such as chest straps or head rests. Even if the wheelchair is less than five years old, Medicare should pay for modifications. After all, ALS is a progressive disease. Medicare may pay for repairs to the loaner, if you "own" the chair and it is your principal chair.

Were you swindled or taken advantage of by a shady operator. Medicare is very concerned about wheelchair fraud. Perhaps talk to Medicare? or the local DA?

You are not specific about the choice you made or why. Still, Medicare REQUIRES an OT evaluation and a doctor's prescription to get a power wheelchair. I am all for personal responsibility but if your doctor prescribed or OT recommended a wheelchair that is clearly not suitable for someone with ALS, then the doctor or OT was negligent. Medicare might help. Or see if the disability agency in Texas has ideas about recourse.

Hope this helps

 

[berniec74]

Do you have an actual ALS Association nearby? I know you mentioned MDA. There loan closet should or might offer a chair. I am in St. Louis and have a chair on loan. I just got fitted for my own chair via Medicare but I too didn't know I was entitled to one so don't feel bad. I have a an ALS clinic here at St. Louis University so I am lucky...they have a social worker on the team that has helped me a lot! Reach out to as many resources as possible and ask for what you need. I realized early on that you really have to be your own advocate no matter what Let me know if I can help in any way!