January 31, 2020 at 10:00 am #15791
Some days it’s hard to not think about the future when living with Friedreich’s Ataxia. Lately I have been thinking what will happen if I lose all of my independence and become wheelchair bound.
Do you have any worries about the future? If so, what coping mechanisms do you use to make it through?
February 2, 2020 at 6:39 pm #15796KatherineParticipant
Remember that needing a wheelchair is not the same as losing all your independence. Plenty of wheelchair uses lead full, independent lives. I follow a lot of disabled activists and artists on twitter to remind myself of this.
February 3, 2020 at 5:10 pm #15797
February 4, 2020 at 11:03 am #15810jacko CardozoParticipant
I didn’t want to get in a wheelchair when everybody encouraged me too. I Was angrier more stressed and falling over all the time.
My brother is 8 years younger than me, very chilled and hopped in a wheelchair as soon as it was recommended.
I took inspiration and got in one a few months later. me, my brother n sister all have ataxia, all use wheelchairs.
As soon as i got in a wheelchair i realised how much of a relief it is to go where you want without stress, strain and effort.
The technology is amazing you can get many different types of wheelchair, fast, lightweight, electric or collapsable. I have an attachment that i clip on when i want to go out on the street, 30klmph. Gets me to by destination quicker than a car through traffic in a busy city.
Everybody does it differently, everybody’s ataxia affects them differently, everyone has different requirements, yours will be specific and personalised.
It is amazing how socially accepted it is to be in a wheelchair too, people get freaked out and don’t know what to do if you wobble drunkenly down the street, but in a wheelchair they can be even patronisingly helpful.
It is true my legs have atrophied more from lack of use. But that is more my fault for spending too much time in my chair (it is just so much easier and i have things to do, places to be ; )
If you use a wheelchair you could actually help slow the progression, your time, energy and stress will be freed up so you can focus on performing the right kind of directed exorcize and stretches.
Wouldn’t you prefer to glide along elegantly and effortlessly than struggling around?
You can learn some funky wheelchair dance moves, play sports, and so much more. Your life could be revolutionised!
February 4, 2020 at 9:29 pm #15815
@jacko-cardozo I am so happy to hear that utilizing a wheelchair has helped you in so many ways!
You make a good point about it slowing down progression! I never thought about how it reduces energy, stress and thme! I think I will have to use my wheelchair more often than the rollator!
February 11, 2020 at 1:24 pm #15829ClesterParticipant
Since an ER Dr tried to kill my wife a few years ago, my wife is almost completely dependant on me for nearly everything. We have been basically been forced to live in a tiny travel trailer on less than minimum wage. So we travel a lot, as often as we can. Timing our travels between Dr appointments, which we schedule all at about the same times.
The traveling has improved her health. We both look forward to our next adventure s each time. I believe it’s the excitement and seeing new things and meeting new people that helps both of us.
I completely gutted out an old trailer and made it around her needs…hoyer lift for the bed and toilet,room for her to move around in her wheelchair(one of those large powered chairs), shelving etc., so she can get to “her” things as best as I could,solar powered (we stay as often as we can in national forests, no electric or water …. Free camping. Lol) instead of spending on rent we spend on travel…. Gas and souvenirs etc.
We have been living in our trailer full time now for about 8 months.
The stress on me is incredible. But for me to sacrifice for her is worth it….no one else will.
The future is what you make of it. Good or bad.
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