Manual Wheelchair options?

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LogsOnFire

New member
Joined
Dec 21, 2018
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2
Reason
Friend was DX
Diagnosis
11/2018
Country
US
State
MA
City
Cambridge
Hi all,

I'm trying to help my friend and his main caregiver find a better wheelchair option. The general idea is that they would love to find a manual/foldable option that has some kind of neck support and decent cushioning. Right now, he has a basic manual wheelchair on loan. It will work to get him from point A to point B, but it has no neck support, which he really needs, so it's not good for sitting in for any length of time. And it takes so much work to make multiple transfers that it means he's basically isolated in his room and confined to his bed. If he had a comfortable and supportive wheelchair, he could conceivably do things like go to the living room and hang out there, or go out on the porch, etc. They want something manual because they want it to be foldable and portable and relatively lightweight (so they could toss it in the car - he can still move around on his own a bit and sit up in a regular car seat), although I know there are foldable electrics as well. I'm going to suggest that they schedule a wheelchair eval with a PT to look into something longer term that insurance would pay for, but I understand that can take awhile and honestly, they need something now and would be willing to just buy it. My friend is 5’8”, maybe a little more, and very thin. If it matters (though I'm not sure it does for this particular question), he has a feeding tube and a trach, and is often on a vent. They'd want something appropriate for his size, with neck support and good cushioning in the back and seat. I've found some stuff online but I could use some advice or guidance from folks with first hand experience.

Thanks so much.
 
My recommendation would be to definitely go through with the wheelchair evaluation with a PT. In the meantime, I suggest borrowing a power wheelchair from the ALS loaner closet. I think your friend would find it more comfortable, supportive, and functional than any manual wheelchair. Hopefully he has accessible entry into the house. There are public transportation options for pwcs assuming he doesn’t already have a mobility van.

A manual folding transport chair could be used for outings if desired, but I’m unaware of any that provide head support. I wonder if a travel pillow would work with his trach.
 
In the meantime, I suggest borrowing a power wheelchair from the ALS loaner closet.

Hopefully he has accessible entry into the house.

There are public transportation options for pwcs assuming he doesn’t already have a mobility van.

Thanks, a few follow-up questions:
- what's the ALS loaner closet?
- he doesn't yet; they are in the process of building a ramp, but, the interior is accessible and he is able to get from house to car with help for now, without a ramp
- he doesn't have a mobility van (yet?); are there public transport options outside of urban areas? I'm in the city, but my friend is an hour and half west, definitely rural, not even suburban really.

He's got bulbar ALS, so the main issues he's having right now are pulmonary and respiratory; he's got plenty of fine motor control and whatnot, but not a lot of strength or stamina. It would be a huge improvement just to have a chair that is comfortable enough for sitting in for longer periods of time inside the house, as they are trying to minimize the number of tranfers (bed to wheelchair to regular chair and all in reverse takes too much energy right now; it would be great if he could just go from bed to chair and stay there).

Thanks so much again.
 
Most local chapters of the ALS Association maintain a loaner closet which is mostly used donated equipment. If he is plugged into an ALS clinic, they would have access to this. Otherwise check in with your local chapter of ALSA. There will likely be a care coordinator who can also inform you about public transportation services. They may even know of people who can install ramps.
 
Does he have a lift chair for comfort during the day? I know lots of PALS who practically live in their lift chairs. I've had mine for four years and it would be hard to live without it. It's a Golden Cloud.

Your local ALS chapter should be able to assist you in finding a loaner power wheelchair and even help with the ramp. There might be grants available or, at least, names of contractors that could put in a ramp very quickly.
 
I bought a nice chair from Amazon that had raiseable leg supports for $120 and a head support for another hundred bucks. I bought it as a backup for my permobile and most importantly to allow me to get up steps that would stymie the permobile.

All it takes is a couple of 6 inch steps to render access via power wheelchair impossible. Whereas a manual chair can be pulled up by a moderately strong person.
 
It sounds like he needs a Hoyer lift as well, for transfers, something to ask about with all the organizations that have been mentioned. Frequently, you can get a loaner. The more "people-powered lifts" that are difficult, the more danger of falls and injuries.
 
Please call CCALS today! They will set him up with a nice loaner power chair immediately and walk around the house to see whaat else he needs that they can get for him. They will even provide lift chairs. They are wonderful!
 
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Hello Iris I saw your request about manual wheelchairs first of all I would say before getting any wheelchair find a River rehabilitation center and go to chacho wheelchair specialist from my money for the best manual wheelchair out there the fixed frame manual wheelchairs are the easiest to push easiest to use. Roseway under 17 lb assembled and they break down most of them into four parts they can fit in the front seat or the back and they're easier travel since they don't have all their parts together the average folding wheelchair weighs about 45 to 50lbs. I don't know how far along your friend is but my wheelchair specialist recommended a power chair over a Manuel chair because in 5 years which is the time Medicare Medicaid in an old insurances will replace a wheelchair is a long time away in many things could happen then like I lose control of my trunk or even my head and I'm stuck to a wheelchair I can't push I did buy one as a backup and temporary was waiting for my power chair you can find them on eBay and different places for under $1,000 I know that sounds expensive but I knew power chair and cost upwards of $30,000 mine at least. I have a quickie Q7 when was used and works perfectly. Be careful when you buy a manual that it fits the person correctly that is easy to pick up for that person. Those are my best suggestion let me know if you have any questions

Leo Malkin
 
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Leo, I am assuming anyone buying a manual wheelchair in ALS is doing so on their own nickel. You're right -- Medicare is for the power chair.
 
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