Wheelchairs

BlsdMama

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Dec 5, 2016
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DX UMND/PLS
Diagnosis
05/2017
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Iowa (IA)
I have my "fitting" next week at the ALS Clinic. It's scheduled between PT and my chosen provider. I have private insurance and the cost of a "covered" chair (whatever that means) will be the remaining part of my deductible for the year - $400.

This will be my power chair. What will this appointment be like? I have no idea what to expect!
 

KarenNWendyn

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In mine, I met with an OT and a rep from NuMotion. They had me try a couple of wheelchairs and took some measurements of me. Then after I told them what kind of wheelchair I wanted, we went over different features and accessories. They submitted some paperwork, and I heard back from NuMotion about 3-4 months later saying my chair was ready.
 

KimT

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08/2015
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South
My company tried to push a Quantum on me but did bring both the Quantum and Permobil over. I liked the Permobil much more. I had heard that there were ALSA grants for the elevator function and found that Quantum would throw it in. I didn't make a commitment and decided to call the Permobil rep. She came directly to my house with chairs and about a dozen seat covers. She said Permobil would throw in the elevator function if the grant didn't pay for it.

Prior to that an OT came and measured me. I had the letter from my local neurologist stating that I had both ALS and fibromyalgia and needed extra padding to make the chair suit my needs.

The company was irritated that I didn't buy a Quantum but I found that they had a higher markup so the company would have made more money if I had settled for the chair they were pushing.

It took about four months from start to finish but a good part of that was my not settling for what they offered.
 

KarenNWendyn

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FWIW, I have both a Permobil and a Quantum. The Permobil (F5) was the one I got through my insurance, and the Quantum was gifted to me by a very generous ALS widow. The Permobil is a better chair overall, but the Quantum isn’t a bad chair. The Quantum is actually a little smaller and is the one I bring to restaurants, concerts, and plays where a slightly smaller chair is advantageous. My Permobil is a front wheel drive and the Quantum is mid wheel drive, with the midwheel being more maneuverable. However, Permobil also makes midwheel drive models that would also be more maneuverable. The make and model of chair you choose comes down to personal taste and how you plan to use your chair. Hopefully the professionals at your “chair fitting” will review a number of options with you.

It’s likely SWalker will chime in with invaluable input. He’s quite the guru here on all things wheelchair.
 

BlsdMama

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Joined
Dec 5, 2016
Messages
41
Reason
DX UMND/PLS
Diagnosis
05/2017
Country
US
State
Iowa (IA)
Thank you all for responding. I feel like I'm at a point I have to do the fitting and then make a decision without feeling equipped to make the decision! ;)

I'm one of those over-researcher types and this is challenging to me because I am preferring to shove off the research than sit down and just do it. :p
 

KenM

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Joined
Jun 21, 2019
Messages
22
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
To those of you who have acquired wheelchairs, were you able to do this well in advance of when you needed it, and if so did the insurance company cover it without a problem or did they want to wait until you had demonstrable need?
 

BlsdMama

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DX UMND/PLS
Diagnosis
05/2017
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US
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Iowa (IA)
I can only speak to myself as we're facing this. I have slow progression and they are still deciding between PLS and UMND ALS.

But, I don't "need" the wheelchair at this moment. They are (strongly) encouraging me to NOT wait until I NEED it. They said it's a process that can take a little while. So, at this moment I *need* a rollator (it's ordered) and I am using forearm crutches out and about, but my legs and balance do not love me for it.

My nurse at clinic encouraged me to consider the wheelchair as a tool to be used to conserve my energy and help me live my life. She asked would you go more places / do more things if you used a wheelchair? The answer is yes. We have small children and I can't imagine tackling a zoo or a museum - or even Costco these days, without something to ride on.
So they don't think I'll have any issues getting approved. We'll see.
 

KarenNWendyn

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To those of you who have acquired wheelchairs, were you able to do this well in advance of when you needed it, and if so did the insurance company cover it without a problem or did they want to wait until you had demonstrable need?
Yes, yes. I was using a walker to walk my dog and was getting slower and more fatigued. I asked the PT in clinic if it was time for a wheelchair (knowing it would take at least 3 months to get one). She agreed and initiated the paperwork. It’s all how they word it to get the insurance to cover it. Meanwhile I borrowed one from the loaner closet and initially used it for walking the dog while continuing to use the walker otherwise.
 

ReginaS

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There are several models of permobil wheelchairs. Some are better for a bit rugged terrain and some are better for tight turns indoors. One lifts you up to nearly standing position.
We had the M3 (for tight turns indoors) and needed it for inside the house. When we went on walks another model might have worked a bit better though the M3 was OK too.
Seat elevation was a great feature.
We were offered a joystick for the caregiver (in the back) and thought we did not need one - however, later on it would have been nice and more convenient than the other option. I would go for the joystick if I had to do it over again.
The weakness of the permobil we had was it's cables. We had to have cables replaced a few times and as we needed the wheelchair for practically everything when it does not work that is not a comfortable situation. Not sure if other wheelchairs are better in that regard.
 

nona

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Joined
Oct 1, 2018
Messages
158
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
I have the Permobil F3 Corpus and I'm mostly happy with it. I recommend the Roho seat cushion. I also recommend front wheel drive, especially if you'll be in snow or gravel.
 

Kristina1

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Joined
Jan 26, 2017
Messages
645
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
My experience was similar to Karen's. First appointment was at the rehab center with PT and NuMotion guy. The PT did an assessment (lots of questions about my current ability/needs), then her and the NuMotion guy took measurements and did paperwork etc... Then a week or two later the NuMotion guy brought a PWC to our home. Took measurements in the home (doorways/angles) then got me set up in the PWC and had me use it around my home and yard. We discussed spending out of pocket on features unlikely to be covered, such as the elevation feature. After that it was just a wait for insurance and getting the chair custom made.

I ended up with a Permobil M3. Ive been very happywith it.
 

Doglady

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Aug 6, 2018
Messages
126
Reason
PALS
Diagnosis
04/2018
Country
US
State
Minnesota
I have a mid wheel Quantum with the elevator function I needed something narrow that turns well inside the house because of a hallway with lots of turns and doors I use the elevator function dozens of times a day to reach things and this really has helped me maintain my independence With my weak arms it's very nice to get higher rather than try to reach up There are grants to help pay for the elevator function and the caregiver controls through the Gleason Foundation your clinic or supplier should be telling you about this
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,106
Reason
DX MND
Diagnosis
07/2014
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US
State
Colorado
Sorry to be late to respond. I have been away from the computer and out of touch for awhile.

I wrote a post about my wheelchair buying experience. You can read it here Things I have learned about a wheelchair

My main point is to not just go with what the system leads you to. Be sure to find a great place to purchase the wheelchair and be sure to try out many wheelchairs before deciding what is right for you. The specialist you work with is critical. Find a great one!

I now have a rear wheel drive chair, a four wheel drive chair, and 3 front wheel drive chairs. I prefer the front wheel drive chairs for general use. In tighter quarters, I prefer the rear wheel drive chair. I don't care for mid wheel drive chairs, but they are the easiest to learn to use and likely will fit in the tightest spaces.

The person you work with to get the wheelchair fitted to your needs is critical. My wheelchairs have lateral thigh supports, lateral thoracic supports, aftermarket headrests, arm holders, "seat belts" (AKA posture support devices), etc.

For my uses, power seat elevate is essential. I have it on all 5 of my wheelchairs.

Of all my wheelchairs, I like my Permobil F5 the best. My Magic Mobility X4 four wheel drive wheelchair is wonderful for special purposes.

The F5 is new to me. Medicare agreed to pay for it, but only if I would pay for the standing capability, seat elevate, lights, and numerous other items. My out of pocket cost would have been close to $20,000. I decided to buy a lightly used F5 (not the stander version) on the used market instead, and will have spent about $6,000 by the time I get it completely fitted to me.

A mid wheel model might be right for you, but don't pick one just because someone tells you it will be better for you. Try all kinds of drive to figure out what you need.

Please post here if you have specific questions and I will try to respond.

Steve
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
41
Reason
DX UMND/PLS
Diagnosis
05/2017
Country
US
State
Iowa (IA)
Thank you everyone for all the replies and the PMs. I appreciated the help more than you know. This was a big one for me.

Steve, in the other thread you said:
"Get the wheelchair early. You are going to need one, so don't fight it. It will take amazingly long to get the wheelchair. For me, it was 4 months from initial visit to wheelchair delivery. "

I'm so grateful you said that. My nurse also wrote me when I was thinking about it and said, "Kelly! Stop thinking about this as *needing* to have it." She wanted me to think of it as a tool.

I only just moved to a walker, but I really waited FAR too long for that. I'm grateful for the move to the wheelchair.

So, today was fitting day. My PT from ALS clinic was there, the rep was there, it was a very positive experience. I felt like I knew what I wanted (thanks to you all) and they are fairly certain my insurance will cover it. My OOP is met for the year.

Looks like the Permobil F5 VS - she thinks I'm perfect for the stand feature and I have to tell you, it made my day to hear that because it was my 1st place choice.

Thank you again.
<3
 

KarenNWendyn

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PALS
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I’m glad it was a positive experience and you went into it armed with information. The F5 is a fantastic chair.

I have a Permobil F5 VS and I love it. The only downsides so far are the out of pocket cost — but if you have met that and can get your insurance to cover it— wonderful!

The other consideration when using it in a van, is whether to secure the chair with tie down straps or a lock-in system. I have a lock-in system (Q-straint) which is convenient, secure, and easy to use. But the plate that had to be installed on the bottom of the chair drastically reduces ground clearance to the degree where I had to replace the threshold on my front door. It also takes away some of the advantages the F5 might have in being a great chair for outdoor use. I have not experienced this problem with my midwheel-drive Quantum which has the same locking system installed.

So just something to think about and discuss with your mobility people if/when you get a van.
 
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