Old 06-14-2018, 05:21 AM #1 (permalink)
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Default Point of decision to use wheelchair

it is hard to make a deal with yourself, when you decide to get yourself one, game is over.
what was the reason you've decided to use wheelchair? fall? non-ability to make xy steps? how long before/after diagnose? i think that this is crucial life decission which erases all hopes, change dreams, modify lives...
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Old 06-14-2018, 05:37 AM #2 (permalink)
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Default Re: Point of decision to use wheelchair

How long after diagnosis is completely individual. If you are at risk of falling or can’t walk without exhaustion to do the things you want to those are good reasons


Getting a chair does NOT mean your life is over. Many have found it liberating- that they can go places and do things that they could not do before.

A number of our members are shining examples of this. Swalker ( Steve) has posted a number of threads about his wheelchair adventures
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Old 06-14-2018, 05:41 AM #3 (permalink)
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Default Re: Point of decision to use wheelchair

Jethro I would encourage you to look at threads by Swalker.

The game could just be starting if you decide to be proactive about fighting ALS by using smart strategies to conserve energy and stay safe.

Do you think Stephen Hawkings life ended when he went into a wheelchair? I know he is a wildcard, but think about how many people live in wheelchairs, and how many achieve incredible things in them.

We can help you turn your thinking around to living with, instead of seeing anything other than a cure as a failure.
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Old 06-14-2018, 11:21 AM #4 (permalink)
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Default Re: Point of decision to use wheelchair

I know firsthand how difficult it is to resign yourself to life in a wheelchair. But it opens up all kinds of freedom to move around longer distances, go places, no more fear of falling, no more exhaustion from trying to walk farther than you should.

you don't have to use it much in the beginning, I had trouble at first even looking at the monstrosity, but it quickly became my best friend.
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Old 06-14-2018, 12:30 PM #5 (permalink)
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Default Re: Point of decision to use wheelchair

I got mine very early because I had fallen and sprained my good ankle. I was hopping around so I decided to get the in-home evaluation and get things going. I did use it a few times but my "good" ankle slowly got better and now I don't use it. If I had to go somewhere that I needed to walk more than a couple hundred yards, I would use it. I'm very relieved I got it when I did and won't have to go through the process again.

Steve (swalker) is an expert at and with wheelchairs. He gave me much good advice as did Kay when it came to getting the features I will need.
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Old 06-14-2018, 01:13 PM #6 (permalink)
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Default Re: Point of decision to use wheelchair

I truly didn't need a wheelchair for the first couple of years. The Dr at the ALS clinic wanted me to get one anyway. Kept asking me. I finally decided to start the process last July as my legs were getting weaker. It took five months from start to finish going through Medicare. Permobil F3. I don't use it all the time. Went for a walk (wheel) with my dog last night. What a pleasure! Could not have have done that without the PW.
It's a GOOD idea to get it before you need it!
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Old 06-14-2018, 05:13 PM #7 (permalink)
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Default Re: Point of decision to use wheelchair

Quite simply I use my chair to keep my world as big as possible. Why waste energy getting places when you can use a chair to get there fresh. I actually just picked up a wheelchair van old enough to have its own driver's licence(2002 Grand Caravan). Now I don't have to rely on my wife to drive everywhere. All equipment is to conserve energy.
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Old 06-15-2018, 10:56 AM #8 (permalink)
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Default Re: Point of decision to use wheelchair

Thank you Jethro for starting this thread. It is a very inter and difficult question you are sharing. My dad has been prescribed a wheelchair but he is quite understandably reluctant. Your thread helps us both. I also found useful insight by writing wheelchair in the search bar.
Good vibes
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Old 06-15-2018, 12:04 PM #9 (permalink)
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Default Re: Point of decision to use wheelchair

I will just say that when I finally decided to order my chair, I probably waited to long. I was at a point that I borrowed one from the local ALSA loan closet, generally it will take at least 3 months from the start of the processes. It also gave me some freedom back. I could go to the store without using the shopping cart as a walker and not worry about people bumping into me and knocking me over. I even started "walking" home from support group, about 2 miles, so that my wife could head back to work earlier than before.

My only suggestion is, if you are still some what mobile, able to stand and support weight, and can afford the cost, the elevator/lift kept me more independent for quite some time. Insurance says that it's a luxury item and they will not pay for this item.
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Old 06-15-2018, 01:21 PM #10 (permalink)
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Default Re: Point of decision to use wheelchair

Just one thing - what Waldo says about the elevate/lift is generally correct. However, when our insurance company said they would not pay, we appealed. They said they would need a statement of necessity and that it could come from the customer or a doctor. I put the clinic nurse practitioner on it, and it was approved in a few days. She argued that DH needed it for activities of daily living. It not only allowed my PALS to stand up when he still could walk a bit, but also (still) allows him to raise himself so that he can be at eye-level when speaking with people.

It's always worth a shot to appeal if you do not get what you feel you need. Worst they can do is say no.
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Old 06-15-2018, 06:29 PM #11 (permalink)
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Default Re: Point of decision to use wheelchair

I also got my elevator function paid directly by Permobil. Quantum was giving out discounts so I told Permobil and they said they would cover the cost of the elevator to get the sale. They also upgraded my arm cushions because I was also diagnosed with fibromyalgia.

Don't be afraid to work with different dealers and different companies just like you do when buying new cars. There's a markup on these things and they have room to play.
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Old 06-16-2018, 06:46 PM #12 (permalink)
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Default Re: Point of decision to use wheelchair

Team Gleason has partnered with permobile to provide Elevate and Anterior tilt on chairs for PALS for free.. I have it on my chair and the ability to raise and lower myself is so handy. I can go to any restaurant with any height table and not be the short guy. Even for conversations it's nice to be able to look someone in something other than their belly button. In a crowd? elevate and you are your original height again. I didn't see the point in having it before, but having it I use it all the time. And one more reason to get a chair is the fact you are slowing everybody down.
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Old 06-17-2018, 02:07 AM #13 (permalink)
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Default Re: Point of decision to use wheelchair

when you use wheelchair, you become lazy. you get a belly (if you are lucky) which additionally makes you lazy because lack of movement. i can not walk at once more than 200-400 meters, so it is a kind of practice for muscles that didnt atrophy (yet). i'm still in a kind of (let's say) shape. i go to gym 3x a week by foot. no walk - no gym. gym means much to me. that's why i said "game is over when you get a wheelchair". i fell maybe 10 times in last year (last few months less often) and nothing happened to me, but my body is changed. no more muscles and fat to protect me. i look like maroon on two matches. i bought knee pads which saved my knees/ligaments/meniscus at least 5 times. anyway, i fell once and i had elbow luxation. simply, i can not accept idea to buy wheelchair. i need to breake every bone to persuade myself that life is changing, same as my body. i have kind of gap in my mind that cannot be patched (wheelchair=error 404). i told to my dr. "i'd rather crawl than use wheelchair". i think that willchair will breake my 8y.old daughter heart. i'd rather do "one_bullet_lead_poison", or die in mountain like an old indian, then see my (still)baby daughter brokenhearted. i live alone, so every day i talk to my alter ego, the only person didn't leave me. that's why i'm active here. me, myals and I ! to many questions, but no single answer. i still can not understand "enjoy every day"...

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Old 06-17-2018, 04:48 AM #14 (permalink)
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Default Re: Point of decision to use wheelchair

I am so very sorry you have taken this approach to things Jethro. I wish you peace xx
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Old 06-17-2018, 12:54 PM #15 (permalink)
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Default Re: Point of decision to use wheelchair

Jethro, I completely understand your feelings, but I also hope for your happiness that you can find ways to adapt to this disease so you can still find purpose and joy in your life.

Many of us on this forum were once very athletic and committed to regular physical workouts. I estimate I have ridden over 40,000 miles on a bicycle over the course of my life. I miss bicycling, hiking, and skiing, and I miss being able to push myself at the gym. That aspect of my life may be over, but my life itself is still going strong.

Even if we can not presently cure ALS, we can find ways to live with it. Wheelchairs and other adaptive equipment are tools to help us manage, even though itís not what we ever would have envisioned before getting ALS.
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