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kmendsley

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Hi everyone. I am in the midst of adjusting a little better to this diagnoses..or so I thought...until the dr. just told me this last week I should be looking into alternative ways of transportation...ie. what I heard is ...your walking sucks, and you keep falling so you need a wheelchair pretty soon here.
Ok, I don't think I am very vain or real concerned with looks or anything until I decided for my b-day to go to Disneyland and my friend wheeled me around in a wheelchair since it would have been too long of a day for me to walk. That was my first experience of being "disabled". I got the saddest looks, curious looks, and overall just stares the entire day. (Please remember as well that I am 24, and most of my friends are in the midst of running around and are at the top of their game so to speak with life...so it is already hard when I am slowing down.)
Finally...my question...after way too much background...should I just go for the power chair or manual? I would like to think that I am ok enough to do manual for a while...but who knows how fast I will progress to the point I can't use my arms? My arms are already clinically weak...but then again...wouldn't it be good for me to use them? And again, I run into the part of me that people would see me as LESS handicap if I was wheeling myself in a manual chair rather than having to have a power chair. Maybe I am just too concerned with looks...or maybe I feel this would be the final shove into not being able to deny that I do have a terminal disease...whatever it is ...I need some input from the people who are or have gone through it .....Please and thank you. :)
 
You only get one shot at this. Borrow a manual chair (ALSA, church, etc.) and let medicare/insurance pay for the power chair. As hard as it is to accept now, you are going to have to have a power chair eventually. They are VERY expensive. You don't want to foot that bill
 
Wheeling yourself in a manual chair will kill your arm muscles faster. Get the power chair. Save your energy for the things you really want to do.

AL
 
You will waste too much energy on a manual WC. Think about all the muscles you would use with a manual WC (not just arms). If you are already weak, that's not the best thing to do! You will have to have the PWC, so go ahead and get it!
 
kmendsley,
I am still somewhat mobile right now, but I have both a manual and a power chair on loan from the ALSA. Since we don't have a van, we have to get the power chair loaded and unloaded so I use it for times when I'll be out for most of the day, like your Disneyland trip or a day at the mall. For shorter trips, into church or to the movies, we use the manual. As most tell you, insurance will only pay for one so save it for the power chair.
 
I have to agree with the others. Save your muscle energy--go for the manual. If you want--to start--you can likely borrow a small scooter from the loaner closet or find an inexpensive one on CL--then get a more expensive-fancier chair down the road when it's absolutely necessary.

I absolutely can't use a manual chair--my arms are too weak--and I'm just now looking for a chair for home because I'm sick and tired of falling--but you may be okay with just the scooter that easily travels with you around and about--perfect for places like Disney, too.

Apply for medicare, hon--as much as I hate to suggest it. There will be things down the road you simply can't afford on your own. I can be wrong--but I THINK medicare, for instance, will only pay for one chair every 5 years--so I'm holding out til and if I need a fancy one--and am looking to find a used one I can afford for home that is portable.

Don't look at it as a limitation--look at is as a means to let you do the things you want to do with your friends! You'll be able to keep up with their walking pace just fine in a scooter---and even Disney will let you use it--and get you through to any rides you want to do (they have 'chair sitting' spots.

I refuse to look at mine as a 'disability aid" I look at it as a means of making my life more FUN for me--and those around me. Manual chairs SUCK.

Ignore the looks--they aren't meant to hurt--though I'm sure they do. I get strange looks when they see me walk out of my car and pull out a scooter--I'm sure people think I'm just lazy--and I could care less. I use it so I don't wear myself out.
 
It's all an adjustment I remember the first time I rode the scooter at walmart I was very self conscious. I know it's not exactly the same thing but just remember you only have so much energy to heck with everyone use it for what's important to you. Good luck to you
 
I agree with everyone else's replies. Also keep in mind that it will take awhile to get the motorized wheelchair so you might as well go ahead and get the slow wheels moving. I am going through VA for mine and finally after about a 3 month wait, I will get evaluated for one June 14th. In fact 4 doctors recommended a motorized wheelchair before my problems were even diagnosed. As for the stares and in some cases rudeness. At Golden Coral our waitress, rudely just shoved me to a different place at the table and said there was a big party coming and they needed room. this big party didn't show. My wife went to the manager (she got there first......lol), then I grabbed the same manager and said in the loudest voice I can muster "does this restaurant have a problem with disabled people?" We got an apology from the manager and waitress and a free meal. Basicaly I just don't take being mistreated, when I see someone staring I say hi to them and ask them how they're doing that normally stops the staring.
 
Re: self-conciousness: I was VERY self-conscious as first. But I really don't get much in the way of stares, and I'm over it now. In fact, I'm amazed at how nice people are to open doors and basically go out of their way to help.

-Tom
 
Hi....As you know we all progress in different ways... Itʻs has been over a year since ALS... I do have a manuel wheelchair because I wanted to exercise while using it but I do have my husband and daughter that will push if and when I get tired but it was my choice to get my WC and my insurance took care most of the cost...my out of pocket was minimum. If your already sign up with MDA in your area, they may have a loaner WC or other assist that would help you... I so understand what you mean about people staring at you.... for me, I just SHAKA (hello) to them... It took me a while to deal with it but now I just live each day to its fullest... Oh, and Iʻm still using my manuel WC for long distance (mall, park, etc...) and a 4 wheeled walker for work and around the house, and use a cane to go upstairs to my daughterʻs room. ALS sucks (yes it does) but there are ways we can make each day special and worth it... I am looking in to a power chair for when I need to have it... TC and God Bless.... Aloha, Yo
 
Wow, I wrote go with manual. Not what I meant at all. The manual ones are very hard on the arms. Electric or scooter definitely.
 
Those that have gone before can provide better advice than I, but I like the idea of borrowing a manual and keeping your strength going. I know that you cannot rebuild muscle, but sometimes exercise can lift your spirits.

You can be planning for that big purchase of the electric in the mean time and have it ready in the wings.

Do ration your energy, we only have so much each day that is available to expend.

- Jerry
 
We borrowed a manual chair to start with and then got a power wheel chair with tilt. When you need it later, it'll give you a lot more independence. We haven't taken the PWC out yet as we don't have a wheelchair accessible vehicle but we've found people to be very kind and courteous and respectful when we've been out in the manual chair. Take care....
 
Alsa will likely have a scooter to loan you. If you are out and about a lot, manual ones kill the arms. Definitely electric if you have any arm issues yet
 
I tried the manuelly powered wheel chair at first but found starting the engine to be dangerous. ( Translation I told my wife it would be good exercise to push me around) lol
 
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