Old 12-15-2015, 06:57 PM #1 (permalink)
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Default Things I have learned about a wheelchair

I have been using a wheelchair for 9 months and think I have learned enough to make it worthwhile sharing a few things.

For background, I now have 3 wheelchairs.
  1. Primary chair is a Permobil C500s VS (I have over 650 miles on it now)
  2. Backup chair is a Permobil C500 Corpus 3G (I have only put about 20 miles on it)
  3. Toy is a Magic Mobility X4 (4 wheel drive) (Still in the testing stage, I have a few hundred yards on this one)

With that introduction, here are some thoughts, comments, and tips:
  1. 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. From what I have read, that is about typical. Getting the wheelchair while you still have some mobility allows you to:
    • More easily adjust it for the perfect fit
    • Not fret too much when it has to go in for service. In my experience, it will go in a few times!
    • Get a wheelchair van AFTER you have the wheelchair. I found there were only a few choices that would accommodate my wheelchair. I only realized this when I had the wheelchair in hand.
    • Not fret too much when your wheelchair van malfunctions. It is no big deal if you can still walk a bit.
    • Learn to drive the wheelchair while you still have good control of your drive hand.
  2. Don't worry about the house. You will ding walls, hallways, doors, etc.. They can be repaired.
  3. Don't worry too much about learning how to control the wheelchair. You will figure it out, and surprisingly fast.
    • I have found my front-wheel drive C500s will back into tighter spots that I can get into going forward.
  4. Get everything you could ever want or dream of on the wheelchair. Really, you are going to need it. Mine has the following, and I would not be without anything on the list.
    • Power leg lift
    • Power recline
    • Power tilt
    • Power seat elevate
    • Power stand
    • Amazingly comfortable and effective lateral trunk supports
    • Lateral thigh supports
    • Lumbar supports
    • Very adjustable headrest (I find I need neck support more than just head support)
    • Lights
    • High speed motor option (don't underestimate the value of this. Great for having fun but also a necessary safety feature when crossing roads).
  5. You won't get everything right the first time, so be prepared for return visits to the wheelchair supplier to address fit and comfort issues.
  6. Get your wheelchair from a GREAT place. Don't settle for second best. Don't settle for where you are referred (unless they are GREAT). Here is what I found valuable at the place I went (NuMotion in Aurora, CO)
    • They had dozens of chairs to try. I downselected to about 4 that might work and then drove them all over their warehouse and parking lot. I was in the wheelchair I finally selected for over 3 hours. It made a huge difference in picking the right wheelchair.
    • The "salesperson" was a physical therapist and was absolutely great. She knows her stuff and had definite opinions, but she did not steer me to a particular brand or model. The decision was mine.
    • They know how to work with insurance companies. What a nightmare that is, but they did it very well.
    • They have a great service department. Your chair will be back for service, so make sure you know it is going to a good place.
    • They deal in large volumes, so they have good relationships (pull) with the vendors for the special situations that will inevitably pop up.
  7. Always have raingear. Rain is the enemy of your wheelchair.
  8. get a good pack for your chair. I repurposed an old MountainSmith lumbar pack (they still make them, but mine is over 20 years old). It fits perfectly on the back of the chair and is large enough to hold toolkit, poncho, rain jacket, rain pants, gloves, hat, sunscreen, etc. It is small enough to not get in the way at all.
  9. Put together a toolkit for your wheelchair and keep it with the chair. Mine has allen wrenches, socket set, pliers, and screwdrivers for every not, bolt, screw, etc. that I could find in the chair. I have ball head allen wrenches because they are the only ones that will reach certain bolt heads. I keep all of this in the pack that hangs off the back of the chair. Why have a toolkit if you cannot use it yourself? Simple, others can! My friend repaired my wheelchair with phone support from NuMotion technicians, rescuing a 3 week trip to Yellowstone!
  10. Set up a charging station for your wheelchair. I have a plastic chair mat from Costco under my chair at the charging station. That was invaluable when a seal failed on one of my drive gear boxes and leaked ugly liquified grease all over the place.
  11. Use your chair. Take it places no one expects you to be able to go. Travel with your wheelchair. I have been over 2.5 miles deep into the backcountry of Yellowstone in my wheelchair on 4 separate trails. I have done just about the entire rim trail along the south rim of the Grand Canyon. You can do the same.

As a final thought, I know how difficult it is to make that first trip to start looking at wheelchairs. Do it. It is hard to sit in the wheelchair for the first time. We know we don't belong there, but in reality, we do. We know folks are going to look at us funny, and they do. So what!

The difference in reactions between kids and adults is great to observe. Young children have a great curiosity. Many will directly ask innocent questions, which I really enjoy. Many adults look away, as if whatever you have may be catching. Get used to these responses. The kids' responses are wonderful and the adults' responses are harmless.

You will find most people to be wonderfully accommodating. For those who are not, it is an opportunity to show them love and kindness.

Good luck wheeling around.

Steve
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Old 12-15-2015, 08:53 PM #2 (permalink)
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Default Re: Things I have learned about a wheelchair

Great information, especially for a guy chair to use outdoors. I would add that cruising the parking lot in test drives should include as many surfaces as possible; grass, gravel, uneven ground, uphill. More importantly, test it indoors in tight places too. As much as you might love being outside, you will be indoors more and the chair has to work there. Also, seriously check out how a BiPAP or a vent can be mounted. They will tell you "No problem" but you may very likely find that the length of your chair is extended by a tray to hold it. Even 6 inches can mean the chair will no longer fit in a bathroom or in your wheelchair vehicle!
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Old 12-15-2015, 08:57 PM #3 (permalink)
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Default Re: Things I have learned about a wheelchair

Steve, your letter will be a great service to people ready for this step. Well thought out and expressed. Glad you have so much freedom with it. Donna
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Old 12-15-2015, 10:15 PM #4 (permalink)
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Default Re: Things I have learned about a wheelchair

This should become a sticky!

Thank you so much for sharing all of this - invaluable!
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Old 12-24-2015, 05:07 PM #5 (permalink)
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Default Re: Things I have learned about a wheelchair

The only thing I can add to that is with my chair the sensitivity of the controls was directly related to the speed it was set at. I ran it off 2 ramps in the first week I had it. I agree that it is freedom and I think this is great advice for people early on in the disease. Thank you for posting.
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Old 12-30-2015, 09:04 AM #6 (permalink)
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Default Re: Things I have learned about a wheelchair

Hey Steve, that was great info! I drive mine everywhere, no stopping me. Yea the looks are interesting but like you said our chance to show kindness. My frontier V 6 is great! Gonna be in a New Years parade with a Hugh Dragon costume covering me as I drive through the streets. FUN ! Love ya chally
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Old 01-01-2016, 08:47 AM #7 (permalink)
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Default Re: Things I have learned about a wheelchair

Steve - thanks for this great information. I can still walk some. I have a scooter I use when going out -- it breaks apart and fits in the back of my small SUV. I know I'll need a powerchair probably this year. Blue Cross just switched me to a horrible HMO plan (they did that for everyone in TX who has an individual policy) and hardly anyone takes it. I will have Medicare in October, so am hoping to hold out til then, if possible. I go to Houston ALS Clinic next month, so will be talking with the powerchair rep there. Thanks again Steve.
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Old 01-01-2016, 10:08 AM #8 (permalink)
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Default Re: Things I have learned about a wheelchair

Diane

I sent you a private message, but I cant tell if it went or not.
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Old 01-01-2016, 11:08 AM #9 (permalink)
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Default Re: Things I have learned about a wheelchair

thanks for the good tips. anything on racing
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Old 01-01-2016, 12:28 PM #10 (permalink)
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Default Re: Things I have learned about a wheelchair

Texastc, I don't see any messages from you. The forum has been having technical problems lately so it might have gotten caught in a glitch. Try again? I have been wanting to talk to you but unsure.
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Old 01-02-2016, 02:15 PM #11 (permalink)
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Default Re: Things I have learned about a wheelchair

One thing Ifound out recently:

Airlines will treat even your full-size chair as baggage, meaning you can fly most anywhere and take your chair. BUT, beware if you have to use a regional (smaller sized) aircraft. Our flights to/from Tucson used these and the chair almost didn't fit in the baggage door. I felt sorry for the baggage handlers after they came to ask, for the third time, if I was sure the seat back didn't fold down. I was also really worried about how much damage was going to be done to my precious chair by those guys working so hard to get this 350 lb square peg into a round hole. Pretty sure we were late getting out of LA for home.
Ended up with a few minor scratches on the gorgeous green shroud on my M300 but nothing major. And I'm sure all of you in PWCs understand why the chair feels so precious...it's a safe place compared to going walk-about.
Anyway, after getting home I started researching more portable PWC options for our next trip. Pricey but worth it to be able to travel a bit easier.
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Old 01-02-2016, 02:56 PM #12 (permalink)
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Default Re: Things I have learned about a wheelchair

azwxman: Great info about flying with the chair. I have not yet attempted that. I bet my C500 would not have fit on the regional jet. When I fly, I will be sure to inquire about the type of aircraft and size of cargo door. I will fly with my backup wheelchair (another C500) that already has scratches on the shroud.

davbo49: I have the high speed motors in my primary chair (C500s VS). But it will still only do 6.5 mph. I think I will have to do what burgerman has done (POWER WHEELCHAIRS and ADAPTED MOBILITY VEHICLES). He builds his own chairs. His current one uses LiFePo4 batteries, runs at 48 volts, and will do 15 mph with a range of 45 miles. I am seriously considering building one of those as my next project.

Texas Quilter: From what I understand, Medicare would not consider me eligible for a wheelchair. I can still walk around the house some, so they would deem me as not needing it for essential activities of daily living. I am sure glad I have private insurance (United Healthcare), that paid for my primary wheelchair (except the seat elevate function and the cupholder).

Chally: Wheelchair as a dragon. I had not thought of that one. I will have to look into local parades.

hjlindley: I too found that I had to go into the slower speed modes as I was learning to drive the wheelchair. After a few holes in the walls and negative xrays on my leg I learned to keep it on the lower settings. Now that I have been in the wheelchair for awhile I feel quite safe and in control at the higher settings.

Diane H: You are very right. I left out the obvious essentials of a wheelchair. It must work for daily living in addition to whatever adventures fit your personality. When getting my primary wheelchair I made sure it would accommodate a vent and lots of other stuff. I have no idea how much longer the chair would be if I were to add one.

Steve
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Old 02-01-2016, 12:18 AM #13 (permalink)
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Default Re: Things I have learned about a wheelchair

Steve
I have started the PWC search process-- I fear a little late-- and the process is daunting. Your post is very helpful and I THANK YOU for your kindness
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Old 02-01-2016, 12:24 AM #14 (permalink)
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Default Re: Things I have learned about a wheelchair

I am glad it was helpful.

Let us know what you wind up with! We want to see pictures

Steve
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Old 02-01-2016, 12:32 PM #15 (permalink)
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Default Re: Things I have learned about a wheelchair

Cowboy Ron,
If you have Medicare or other insurance the search for a wheelchair is much easier if you go through the MDA. They will set you up to see a specialist in determining the best chair for you. Unlike buying directly yourself, they will get a wheelchair that is correctly fitted for your body, that can be adapted to add features you may need later, and that is recommended for an ALS patient's needs. (We don't all have someone like Steve around to fix problems and create chairs for every occasion! Heck, most of us would adopt Steve in a flash to be our wheelchair mechanic and Creator of Dream Machines From Junkers and Spare Parts!)

The MDA ALS Clinic will have an Occupational or Physical Therapist who knows the approval process for ordering a chair and will do all the paperwork and coordination of paperwork necessary to get the chair without denials and delays. It will take at least 3 months to get the chair approved and more time to have it built. If you need a chair sooner, the MDA and ALSA have loaners available. They probably won't be exactly what you need, but they are free for as long as you need them. Yes, you can buy a chair immediately elsewhere, but without the help of someone very familiar with ALS you are likely to end up with a chair that isn't comfortable and lacks adaptability.

If you don't have insurance you can still work with the MDA/ALS clinic staff to help you find a good used chair for your needs. Sadly, there are a lot of barely used chairs out there. The price is a fraction of new because the market for them is small. That doesn't mean there are few people needing power wheelchairs. The market for used chairs is small because most disabled people are on Medicare and the 80% coverage brings the out of pocket cost down to the cost of a used chair in good shape. Given a choice of new or used at the same general price, people go with a new one customized for their needs.

If you would like info from someone who has had a scooter and three chairs over 25 years, click on my name and then on visit my homepage. Under Equipment you will find my info and tips about wheelchairs.
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