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KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
4,873
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'm in a lot of pain and some of it is from packing and bending with weak muscles. Much of it is from the sprained ankle that didn't heal. The rest is just this beast.

I went from walking fast to a wheelchair. I have a transport chair and one I can roll myself. I'm ordering a light power one for the interim. They are measuring me for my PWC. That's where I need help.

I can't wait until I go back to clinic. My local neuro will see me quickly. What does he need to write on the RX for the chair. He will write whatever I need.

I'm trying to remodel a bathroom. Do I need my neuro to order an OT to help me with this? My ceilings are 9 feet high. Can I get a track put up there that supports transporting me from bedroom to bathroom?

I'm so overwhelmed I don't know where to start. I thought, because of my slow progression, I would have six months to get all this done.

My support group is down to 6 PALS. Two of us don't have CALS but my friend, Fred, has stepped up to the plate in a big way and we bought a condo together. It is big but needs lots of modifications. I plan on paying for them out of the $100,000 I net from the sale of my condo (after commissions and paying Fred back for half of the downpayment he put up.)

There is also a lady who will sell me a Dodge Caravan for $20,000. It has a rear entry motorized and is a 2016 with 40,000 miles. The other option is to finance something so I won't have to use a big chunk of money. I still have a leased SUV that has another year on the lease.

I know there are so many things to consider and I tried to stay ahead of the game but falling and the hurricane evacuation made it impossible. I also had to wait until July 1 to get a portion of my retirement money.

It's all turning into one big nightmare. It's no wonder my family in NY don't want anything to do with it.
 
I am so happy to hear that you are able to find the home and vehicle you need! It is all a lot of work and worry but well worth it in the long run.

I am not certain what a light power chair would be and how long it would work for you. Down the line you will need to add a headrest, have tilt/recline and leg rests that extend as you lie back. You will probably need added trunk and thigh supports as well. The seat cushion of the chair needs to be entirely removable because a ROHO cushion is meant to rest on the flat metal seat pan of the chair, not on top of the existing seat cushion. You will also want attendant controls so that someone can drive the chair at times.

Most of these things can be added on to a basic chair as you need them but not the tilt/recline and leg extensions. Medicare and other insurances will pay for a new chair whenever you can prove that your existing chair is no longer meeting your medical needs. But getting a new chair within five years will take a lot of proof of need, probably at least one denial that you will need to argue against, and that means many months of waiting for a new chair.

I suggest you buy a used scooter for an inexpensive interim chair. They can be found a little beat up but still working well for as little as $300 on Craig's List. Then you will have the time to get the best chair for you, one that is adaptable for future needs. You didn't say who is measuring you for your chair, but it needs to be an OT familiar with ALS and with the paperwork needed for approval of the high level chair you need. That won't be a typical wheelchair salesman.

Going through and MDA/ALS or ALSA clinic is the best way to get the chair you need, the paperwork completed correctly by coordination between the OT and the wheelchair specialist, and the doctors sign off on every thing the chair should have. And if you use or plan to use BiPAP, insist on a chair that will allow for mounting the BiPAP easily without adding more than a few inches to the length of the chair. (Not a Quantum!)

The bathroom remodel would benefit from having an experienced OT who knows the difference between the space needed for a standard wheelchair and a power chair! The overhead lift is great in the bathroom and the ideal lift track would go from your bed to the attached bathroom. That generally requires removing the top of the door frame up to the ceiling so the track is level all the way. A nine foot high ceiling shouldn't be a problem.

Diane
 
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Thanks, Diane. I think I'm buying an EZ Lite motorized wheelchair outright. The resale is very high on them and it will get me around my condo and the common area until my permanent chair is made. One member of our group had to wait 5 months for his chair and the loaner was way too small for him. Right now I have good arm and thigh strength so if this could suffice for another 4-5 months, it would be worth the expense. Especially since it could be sold later. I saw some on e-bay going for 90% of sticker and they were a year old. I really need it to get around the condo safely when I'm alone and get out while I still can. It will also help my sprained ankle to heal because I've been walking on it since I fell in September.

The ALSA woman in our chapter does not know of an OT here familiar with ALS but other members of the group do.
 
Getting the right PWC for you is a very big deal. I think you need to contact your clinic doctors and tell them about the changes and they can get you and to see the correct people to evaluate you and make sure you get all the correct options.
 
I agree! I'm going to use someone who works out of the Jacksonville clinic and just pay out of pocket for the consultation. My local neuro will write the Rx for everything I need. The clinic is slow to respond to me and it's hard for me to find a ride to Jacksonville. I'm exhausted from the move. I feel like a zombie. The RT is coming to the new condo tomorrow to teach Fred and me how to use the Trilogy again. Fred wasn't there the first time. Until a couple of weeks ago I was able to drive around and walk on my sprained ankle. There is just so much to do.
 
Hi Kim, sorry this is all coming to a head sooner than you thought.

Assuming you are looking for Medicare reimbursement for the PWC, Medicare requires both a face-to-face evaluation by a physician and a detailed justification related to the Group 3 Power classification (which you need) plus all the options and measurements that apply. This justification is often written by an ATP, who works for the wheelchair supplier, because they do most of the evals for what you need and their company has to order it. Sometimes a local OT or PT who specializes in "complex rehab" can do it, but less and less so as the ATP credential has kind of taken this over.

You can find local ATPs with certifications as "SMS" (seating and mobility specialists) at resna.org. So then if your neuro is willing to do the "7-element" prescription (it is not hard) and sign off on the ATP/OT/PT's advice about what you need (which should be based on an in-home evaluation since that is the setting for which Medicare buys the chair) then you do not need to go to clinic for it, as usually they are rubber-stamping what the supplier writes up anyway.

But you would want to assure yourself that the ATP you work with has ALS experience, if you choose a supplier on your own. And, of course, they have to be in network for your plan. [ah, our posts crossed -- see you are going to Jax, so never mind].

If you are remodeling the bathroom, you could ensure enough room for a floor lift so you wouldn't need an overhead setup, which is usually pricier, though I understand some people prefer them.

Not quite getting the van. Who will drive it as you and Fred progress? Does the new place have transit access or paratransit coverage? If so, perhaps you don't need the van? Just trying to be budget-conscious.
 
Kim, here are some thoughts.

1. Don't get a vehicle until after you have your main wheelchair. Not all wheelchairs fit into all vehicles. You want to make sure you get a vehicle that will readily accommodate your wheelchair.

2. Get your main wheelchair ASAP. Work with your doctors and wheelchair providers to get the ball rolling on that as soon as you possibly can. Get every option you can. You many not need some of them today, but you will need them in the future. Getting them later will be a major pain. Insurance is what slowed mine down. In hindsight, I could have sped the process up some by pestering the wheelchair folks, the doctor, and the insurance company. Mine took 4 months, but I bet I could have made it happen in a little over 2 (but, of course, I did not know that then).

3. I understand your desire to get a lightweight wheelchair as a temporary measure and then sell it when you are done with it. I believe this will simply be a distraction, taking time, energy, and money that could be better used elsewhere. Focus your energies on getting the primary wheelchair. Get a loaner from somewhere (I know you mentioned there are none, but I bet some persistence would uncover something that could tide you over). Perhaps the folks you are getting your wheelchair from could loan or rent you one short term.

4. I found my wheelchair van on craigslist. I looked seriously for about 2 months to find it. It has served me well. I started the search before my wheelchair arrived but did not find and buy the van until after we had the wheelchair (so I could make sure it would fit). Around here, wheelchair vans go fast. I made sure I had the cash ready to go so that when an appropriate van hit the market I could buy it within a day. That was great both for me and for the folks selling the van (their handicapped son had recently passed away...unloading the van was a big relief to them and I was able to make it happen very fast).

5. Get a van where you can see out the windshield when riding in your wheelchair.

6. I have found that having a backup wheelchair is almost essential. If you absolutely must purchase a wheelchair for short term use, consider getting a lightly used wheelchair that is virtually identical to the wheelchair insurance/medicare is in the process of getting you. You will find they typically sell for about what the wheelchair deductible would be. You can use that as a backup wheelchair after you obtain your main wheelchair. As an example, I bought a 2-year old Permobil C500 Corpus 3G ( a very nice wheelchair) for $3,800 used (they go for about $35,000 new). It had 26 miles on it. I put about $800 into it for a fit kit etc. to make it just right for me. It uses the same batteries as my primary wheelchair (a Permobil C500s VS), but has a different seating system.

7. It might be hard to accept now, but be assured that the light weight wheelchair you are considering will not be a viable backup wheelchair in the future. You will require more than it has to offer in terms of body support.

8. See my thread on wheelchairs which is currently on the third page of the Tips, Tricks, and Gadgets sub forum. Or just search for "things I have learned about a wheelchair".

I am thinking of you as you go through this difficult time. Rest assured all of this will get sorted out, though I know that it will require effort on your part to make it happen.

Steve
 
Agree w/ Steve that esp. since your progression has accelerated, wouldn't spend a lot of $ on an interim solution, and that any vehicle should be chair-specific. Diane's point re scooters is also well taken.

Permobil has a history of expediting ALS chair orders but you have to minimize delays caused by your clinic and the supplier, by bird-dogging each in terms of the required steps. There is no more important project for you that I can see.
 
Hi Kim, sorry this is all coming to a head sooner than you thought.

Assuming you are looking for Medicare reimbursement for the PWC, Medicare requires both a face-to-face evaluation by a physician and a detailed justification related to the Group 3 Power classification (which you need) plus all the options and measurements that apply. This justification is often written by an ATP, who works for the wheelchair supplier, because they do most of the evals for what you need and their company has to order it. Sometimes a local OT or PT who specializes in "complex rehab" can do it, but less and less so as the ATP credential has kind of taken this over.

You can find local ATPs with certifications as "SMS" (seating and mobility specialists) at resna.org. So then if your neuro is willing to do the "7-element" prescription (it is not hard) and sign off on the ATP/OT/PT's advice about what you need (which should be based on an in-home evaluation since that is the setting for which Medicare buys the chair) then you do not need to go to clinic for it, as usually they are rubber-stamping what the supplier writes up anyway.

But you would want to assure yourself that the ATP you work with has ALS experience, if you choose a supplier on your own. And, of course, they have to be in network for your plan. [ah, our posts crossed -- see you are going to Jax, so never mind].

If you are remodeling the bathroom, you could ensure enough room for a floor lift so you wouldn't need an overhead setup, which is usually pricier, though I understand some people prefer them.

Not quite getting the van. Who will drive it as you and Fred progress? Does the new place have transit access or paratransit coverage? If so, perhaps you don't need the van? Just trying to be budget-conscious.

Laurie, Fred doesn't have ALS. He is a friend from work who I dated for quite a few years in the 90s. He is my best friend. We bought the condo as joint tenants with right of survivor and each paid 1/2 of the down payment. He stepped up to the plate when I had nobody. We bought a 2,000 sq. ft 3 bedroom/3 bathroom so I was able to take Ace and he and Fred are already bonded.....Ace sleeps with him. We use the third bedroom for a joint office. The floor plan is good for us.
 
Oh! So great he is stepping up to be with you. Still...he could also be your transit shepherd, if there is transit in your area.
 
A lady who just lost her husband to ALS visited me tonight. She brought over her van. Mike had a permobile chair and a spare. She gave the spare to a loaner closet in Jacksonville, FL. She is going to try to get it back for me to use until my permanent one is made. It is for a smaller person so she thinks it will be a good fit for me. I was mistaken on her van specs. It is a Dodge Grand Caravan 2012 with 40,000 miles and she wants $20,000. It has automatic side and rear doors with an automatic rear-entry ramp. I would face forward but there would be room for a driver and three other passengers. the rear entry would work best for the layout of the parking garage here.

The thank you buttons are gone but Steve, thanks a bunch for your suggestions and Laurie, you always come to my rescue.

The only problem I see, Steve, is that I live in a condo and don't know where I will store a backup chair with all the other equipment I have. I want to learn more about the ceiling track versus the Hoyer. I guess I won't have to worry about paying income taxes this year with all the medical expenses that aren't covered by medicare or my Plan F supplement.
 
Oh! So great he is stepping up to be with you. Still...he could also be your transit shepherd, if there is transit in your area.

If only we lived in progressive Seattle....Daytona Beach has NO transit. They have a bus service and not even benches for the poor people to sit on. Our governor doesn't believe in infrastructure expenditures and Daytona Beach only caters to NASCAR. The bus doesn't even come on beachside (where my new condo is located.)

I have some friends from church who will help drive me places because Fred needs a life besides me.
 
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