My Power Wheelchair Journey

[Jim-T]

Sorry that this is a long post. I don’t blame anyone who stops reading it before the end. Conserve your mental energy!

January 2016:

Conclude six visits to my neuro-therapist. During those visits, I notice that she frequently grabs my arm as I use my walker because she thinks I'm falling. At our last meeting she gives me a list of clinics that conduct Mobility & Wheelchair Seating Evaluations. She says she isn't telling me to get a power wheelchair; but that I might think about it. For the first time, I begin to consider a power wheelchair. (A standard, self-propelled wheelchair is impossible for me to use due to left arm weakness and MS fatigue.)

January - September 2016:

Even while using my trusty walker I repeatedly come close to falling, only recovering my balance by grabbing something or leaning into a wall. I do fall four times; but luckily have soft, injury free landings all four times. I worry about falling in the bathroom or kitchen where there is no soft landing zones. I notice that moving around my house with the walker demands more and more of my very limited energy.

Two reasons for getting a power wheelchair begin to form in my mind: (1) safety and (2) energy conservation. However, I still view a power wheelchair as "giving up." When I was first diagnosed in 2005, I promised myself that I would walk as long as I possibly could. A power wheelchair breaks a solemn oath I made to myself!

October 2016:

On vacation in Florida I rent a Pride front wheel power wheelchair. Simply moving around the condo takes so much less energy while being essentially free from falls! Even going down to the elevator to join people at the pool is extremely easy with a power wheelchair. The two things I don't care for on the Pride chair was maneuverability (I hit things with the rear wheels) and the inability for me to reach even the bottom shelf of the cupboard while seated in the chair.

Overall though, my experience with the Pride wheelchair convinces me that maybe it’s time to seriously consider getting a power wheelchair.

Near the end of October on a whim I make an appointment for a Mobility and Wheelchair Seating Evaluation at a local hospital, to which I know my neurologist refers wheelchair patients, as my father-in-law is undergoing hip surgery.

That turns out to be a very good decision, since appointments to any clinic in our area take months to schedule. Did I not make that appointment, my evaluation would've been moved out to at least March 2017.

January 2017:

A Mobility & Wheelchair Seating Evaluation is conducted at a local Hospital. There is Neurologist, medical students, a physical therapist, and a wheelchair equipment supplier from a local University. I request the University as my supplier because I know two people who use and recommend the University for obtaining power wheelchairs, the University works with a lot of wheelchair manufacturers, and the University is reasonably close to where we live.

Everyone is so kind during the appointment! My fears that they will criticize me for wanting a PWC were totally unfounded.

Anyhow, they are taking the steps to get me into a Group 3 Power Wheelchair. I told the supplier that we will pay for power seat and power leg lifts (maybe). Pleased to discover that the University offers a discount to their customers, plus an additional discount to patients of the University. Just by chance, I am being treated for glaucoma at the University’s Eye Center. I discover that my supplemental insurance (which is not cheap) will cover the 20% that Medicare does not pay.

There was a power chair at the evaluation. I loved the maneuverability of mid-wheel drive, the power lift seat and the tilt! I disliked the weight (around 400 lbs.).

Currently:

I am waiting for all the paperwork to rattle through the medical system. I am told to expect delivery no sooner than April but no later than July. There is not a single day when the is not an incident that reminds me how much I need a PWC.

My biggest worry is transporting the chair, since it is too heavy for the interior in our Minivan. We plan to meet with a mobility van expert before the delivery of the chair.

Also, I wonder how necessary and useful the power leg lifts will be. That option is over $1500 out of our pockets. The chair will have tilt and power seat lift. Do I need the leg lifts?

Any advice or comments from the MS community are always welcomed. I know many of you have made this journey before me.

Best regards,
Jim

[kmallory1]

Great news, Jim! I know it feels like giving up, but the personal energy savings is game changing.

My chair has tilt, recline, and power seat lift. I use all of these every day.

I am in the process of trying to add power leg lifts 18 months later. They will not be covered by insurance. I sure wish I had added them to begin with, since I'm learning about the options the hard way. After I sit in the power chair with my knees bent for a long time it's really hard to straighten my legs. Being able to use the leg lifts to reposition and straighten my legs occasionally will help. Hopefully raising my feet will help with foot and ankle swelling, too.

There are different types of leg lifts. One type is a separate piece and motor for each leg. When all the way down, these hold your legs out at an angle, like the foot rests on a regular manual wheelchair. I found this uncomfortable and really difficult to get out of. It increased the amount of space needed maneuvering into and sitting in the van to the point where I did not fit.

The other type is a center post lift. The motor goes behind the center so that my legs are straight down from my knees, like my current footrest. When activated, it swings up from there, keeping my feet together where they are most comfortable.

It would be good if you could sit in a chair with the proposed leg lifts to feel how they work for you.

We have a Honda Odyssey van with the ramp that slides out from under the floor, by VMI. The E-Z Lock restraint system lets me drive right in and automatically lock in place without manual tie-downs. It has been great, no problems at all.

It is so much easier to go places without having to get off and on the chair and stow it in the back. Many times it just seemed like too much trouble.

Please post your progress occasionally, your story makes great reading. Especially since I just went through it.

Mallory

[Jim-T]

Thanks for the Reply

Hello Mallory,

Thanks for the information. If you don't mind, I have two questions.

The first is, was the recline feature covered by Medicare?

The second is, what type of PWC did you end up getting?

Best regards,

Jim

[kmallory1]

The tilt and recline was covered by Medicare. They allow you to reposition and take the pressure off your posterior, preventing pressure sores. You just mentioned recline, but you'll need both. Recline moves just the back, tilt moves the seat and back together, kind of like a recliner. If you can get the power leg rests it really is like a recliner!
The tilt is also handy for lowering the front to fit your knees under a table.

Medicare covers 80% then your Medigap Insurance picks up the other 20% after the deductible. Unless you have Medicare Advantage, I'm not sure how that works.

My chair is a Quantum Q6 Edge. It's been very comfortable and reliable.

[Jim-T]

My Wheelchair Journey, Part II

Hello,

Well, we are learning that “old age ain’t no place for sissies” (as Bette Davis is supposed to have said, and I don't think she had MS) and, further, that old age when you require a power wheelchair is expensive as all get out!

First, to make our house wheelchair accessible by adding a ramp inside the garage, widening three doorways, modifying the bathroom cabinets and countertop to provide an accessible sink, and creating a roll-in shower (which means ripping up the entire bathroom floor and putting down a new one) is going to cost about $17,000! Maybe we could do it a little cheaper if we sacrificed some quality; but we choose not to do that. At least most of that amount is tax deductible.

Second, a brand-new wheelchair accessible van costs close to $60,000 with the price for used vans dropping down to around $10,000 for a 10-year-old van with over 100,000 miles on it! Wow! Who knew they were that expensive! We’ve never spent $60,000 for a vehicle, even when we were both working. The only tax break on an accessible van is not paying sales tax on the cost of the conversion (if you buy new and if you get a prescription).

So, I guess the takeaway is, if you want to stay mobile and transport your power wheelchair in your own vehicle, bring a fat check book - if you’ve got one!

We haven’t yet decided what to do about transporting the 400-pound monster of a wheelchair.

Best regards,
Jim

[kmallory1]

Hi Jim,

I think portion of the van price that is the cost of the conversion is deductible on your Federal income tax. For a used van, you compare your purchase price to the price of a similar non-converted van. I know you do need a letter of medical necessity from a doctor.

There is a $1,000 rebate from some van manufacturers that only applies to new ones.

The only other option I can think of is the platform that attaches to a trailer hitch. I see those with wheelchairs or big scooters on them. I don't know how well the vinyl covers protect against rain, or how the person manages to get off and on. It might work for those who are still somewhat mobile.

The van is the most expensive vehicle I have ever owned, by almost twice as much. It won't go over some speed bumps without scraping, and it's annoying to drive on a windy day. And it's not very cute.

[Jim-T]

My Wheelchair Journey Continues

Hello,

There follows an update to my wheelchair journey.

During recent four-day vacation to New York City, I rent an Invacare power wheelchair. The ease of moving around in the hotel and out on the town without the fear of falling is just great! We tour museums, go to restaurants, and watch our grandson play in a Jazz Ensemble at the Lincoln Center. Manhattan taxis now offer wheelchair accessible cabs at the same price as regular taxis. The accessible cabs arrive almost as quickly as a regular cab. It’s a nice, if slightly expensive, way to get around town.

When I get home from the wonderful mini-vacation, I realize how silly it is for me to struggle with my walker to move around the house and to continually risk falling. So, I think it a good idea to rent a power wheelchair for use around and out of my home. I am surprised to discover that, while it's very easy to rent a power wheelchair in a vacation area such as New York City or Florida, it isn't so easy when you live in a small town in the Midwest. The best local rental deal is from a medical equipment supplier. They charge $450 a month rent plus $450 down and a $75 delivery fee followed at some point by a $75 pickup charge.

I look on Craigslist. I find an Invacare Pronto M 61 power chair in excellent condition not more than an hour from where we live. It is refurbished by an electrical engineer whose hobby is buying and refurbishing scooters and power wheelchairs. The chair even as a feature we didn't realize when we bought it: the seat lifts over six inches. That lift is high enough for me to prepare meals in the kitchen. In addition, the chair when elevated can slowly move around the kitchen which really makes my life a lot easier. The only downside of the chair is that it's a little uncomfortable after sitting in it all day. But it's good for me to stand up now and then. I pay $450 for the chair. So, for those of you who would like to get a power wheelchair to move around the house and to go outdoors, I strongly suggest that you take a look at some of the online shopping for chairs near you. I suggest you visit sites such as Craigslist, Letgo, and eBay. There are many chairs listed for sale at very reasonable prices. Be safe, however: I had my able-bodied brother-in-law help me pick up the chair from the seller (although the seller was very nice).

One concern I have regarding the wheelchair is that I will be even more de-conditioned than I already am. I message my neurologist’s office to request a script for my neuro-therapist (a physical therapist trained in working with people who have neurological disorders). My first visit is scheduled for next Wednesday. Since I am saving so much energy using the wheelchair, I hope to do some daily exercises to fight de-conditioning.

I continue to await Medicare to approve my Quantum Q6 Edge 2.0 rehab power wheelchair. I'm told that it should be delivered sometime between May and July. I am anxiously waiting for the delivery. However, with the power wheelchair I'm now using around the house I feel much less exhausted during the day as well as much safer. I'm not crashing into walls and continuously grabbing things to avoid falling. I await my rehab chair in much more comfort and safety than before.

Best regards,
Jim

[kmallory1]

Jim,
Glad to hear you're more comfortable. Your chair will likely come with a much better cushion which will make a lot of difference in comfort. It is a good idea to stand occasionally.

On eBay I have found Quantum Q6 Edge with tilt, recline, and power legs for less than I paid for the legs feature. With free shipping! I'm seriously thinking about going that route for my next chair.

The handicap van salesperson I dealt with also does a side business in used power chairs. He told me that many people get one from Medicare then pass away before using it much. Prices are low in the used market because Medicare and insurance won't pay for them, and people who need them can't afford to spend a lot.

It's amazing to see a nearly brand new $28,000 chair offered for $1,500.

[pb909]

Thanks for sharing your story - I've been thru similar experiences.

Did a bathroom remodel about 2 years ago gutting it for accessibility including a roll-in shower at a cost of about $19,000. Not cheap but so nice to have this for ease and safety.

Last year bought a van but was not willing to pay $50-$60K for a new van that we would not use regularly. Also didn't want a high mileage old van. Ended up finding a 10 year old van with 81K miles for $15,000. Received all tax advantages too.

Recently my wife's aunt gave us her late husband's Jazzy chair and we bought new batteries but still would not work. Took it to two different repair places and both found the same issue with a $1400 cost, so I said no since I felt I could do better either used or thru insurance. Haven't done anything further yet and I still use my manual wheelchair and can move around my house freely without much help.

[Jim-T]

My Power Wheelchair Journey - Delayed!

Hello,

I was warned that if my healthcare provider or my supplier was slow in getting the required documents to Medicare or if the documents contained errors or omissions, the process could exceed the time limit and I would have to start all over.

We should've known better than to use one healthcare system for my wheelchair seating evaluation and a different healthcare system for my wheelchair supplier. While they both blame each other for the failure to meet the deadline, the real problem is that each of them have slow, wasteful processes and, if complicated by having to communicate with each other, there is little chance of meeting Medicare's deadlines.

In my January wheelchair evaluation we were told to expect delivery between April and June. Now, after my May 12 wheelchair evaluation, we expect delivery between mid-July & mid-September. My wife doubts I'll ever get a chair. She taken to calling it my "phantom wheelchair." At least this time we are dealing with only one healthcare system.

We are very glad we bought the used Invacare Pronto chair off of Craigslist! While it's uncomfortable, I can get around without exhaustion & falls!

If there is a silver lining, it's that Quantum now offers 12 inches of elevation and fender lights on their iLevel chairs.

Best regards,
Jim

[kmallory1]

Hi Jim,
Sorry to hear your time ran out. It's difficult to coordinate everything and get through the process in Medicare's time limits. You never know who has dropped the ball until it's too late.

I think it's great that the I-Level chair will be available. I'll be interested to see how it works for you.

KMallory

[kmallory1]

Hi Jim,
Did you get your power wheelchair yet? Just wondering how your journey is progressing,

[Jim-T]

It's Almost Here!

My Quantum Q6 Edge 2.0 with power recline, power leg platform, power tilt and power iLevel (12 inch elevation with fender lights) has been approved by my insurance companies and ordered from Quantum. The chair should be delivered to my supplier on September 12 with delivery to our house about a week later!

Of course, we had to pay for the elevation option since Medicare does not consider wheelchair elevation a medical necessity.

But I was very glad to discover that the VA provides our wounded warriors with wheelchair elevation, although probably with even a longer wait time than I experienced.

Those of you who don't rely on a power wheelchair to move around can't really appreciate what a wheelchair like this means to people like me. Without a comfortable electric wheelchair, people such as myself are unable to move safely around their own homes or apartments. Many people suffer falls and injuries without a wheelchair. Going outside is, for many, an impossible dream.

This electric wheelchair is my independence, my mobility, my ability to take an evening stroll with my wife. An electric wheelchair is freedom from falls and from continual exhaustion.

The elevation puts me at eye level, so I can communicate as a normal human, rather than as an invisible person sitting in a lowly wheelchair.

In the kitchen, I can work at a comfortable level when doing knife work; when sautéing, braising or frying on the stove top; and when making a sauce or stock I can see into even the largest stock pot.
*
The power recline and power leg platform allows me to change position when the MS Hug gets too bad or when pressure builds up on a particular spot of my body. These features also allow me to relax in the chair when MS fatigue comes calling.

This wheelchair gives back to me many important parts of my life. I am not confined to a wheelchair. I am no "confined" to a wheelchair. I am liberated by my wheelchair!

That's why I so look forward to the day it will be delivered.

[kmallory1]

Great update!!

[Jim-T]

Journey Complete!

On Tuesday, September 12, my wheelchair journey comes to an end. My supplier representative delivers to our house a Quantum Q6 Edge 2.0 with power recline, power tilt and power elevation.

Nearly one year after I made an appointment for a mobility evaluation and over eight months after my first wheelchair seating appointment, a rehab chair is finally delivered.

Those of you who follow this thread know that I focus on the positive. This chair allows me to participate in so many wonderful activities that I would otherwise miss.

For all the positive things about this wonder of technology, I'm still nostalgic for walking in those now forever past days; and I can't help feeling a tinge of regret that I've past yet another signpost on an MS road down which I am somewhat sad to travel.

Best regards to all in our MS community,
Jim-T