WHEELCHAIR PROBLEMS

Alright, so I think it’s very necessary for me to share with all of you what happened to me today. I’m not sure whether to laugh, cry, scream, or a mixture of all three. The last few months I’ve been experiencing many wheelchair problems, something I’m sure many of you don’t experience quite often. It all started back in early October when I noticed my tires weren’t spinning properly. We had my chair checked as soon as possible and received new tires a few weeks later thinking it would solve the problem. It didn’t. My back tires were spinning out more and more as the days progressed, and the wheelchair technician couldn’t figure out the problem. Finally, in mid-December someone realized it wasn’t the tires itself, but the mechanics of the chair that were giving me the problem. The parts were ordered and I’m STILL waiting for it to be fixed.

Since that last appointment, my wheelchair has gotten significantly worse when I drive it. More often than not, I find myself asking a friend to kick my back left tire because it gets stuck sideways, then drags along the floor. I’ve gotten tangled up in more rugs than I can remember and have spun out on every dry or wet surface imaginable. Don’t even get me started when it rains. I’m better off locking myself indoors. Saying that it’s frustrating to drive my chair right now is quite the understatement. It has gotten to a point where I’m beginning to burn the motor from overworking it, which brings me to the chaos that unfolded today.

I decided to run a few errands today, and headed over to the local Target with a friend. We were going into the dressing room when I suddenly smelled that horrible smell that resembled an electrical fire. We quickly shut off my chair and sat in the dressing room for 45 minutes, hoping my chair would cool off. Nothing. The sales associate in the dressing room started to become increasingly concerned that we were going to have carbon monoxide poisoning and called for some guest assistance. At this point, I’m mortified by what is happening and scared that I have carbon monoxide poisoning thanks to that woman. Not only that, there are mysterious black marks from my tires on the store’s rug and I’m completely stranded. I ended up having another Target employee push me out of the store and sat outside while we waited for another friend to come to our rescue. If that man ever reads this, I sincerely apologize for making you profusely sweat and work a little extra hard today.

Good news? I didn’t set on fire today. Bad news? My chair is now parked in the garage and I’m pretty sure it bit the dust. In other words, I’m stuck in these four walls until further notice.

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

10 thoughts on “WHEELCHAIR PROBLEMS

  1. Allyssa, you are such a trooper! Keep up that positive attitude and it will all work out… Always remember, you are not alone,you have a remarkable family and unbelievably dedicated friends… God bless you, you are in my thoughts and prayers,today and everyday. You are an inspiration to me! Xxoo

  2. ADF, you are incredible. I’m so sorry to hear about your wheelchair troubles, and hope that things get fixed ASAP. Keep being amazing 🙂

  3. Be careful around court….she has been known to start many of fires. Keep the blog going Alyssa, it is a great thing.

  4. thank you for sharing your trials with humor. my sign has recently been diagnosed with SMA2, as you know the at first i was struck with hopelessness and fear for my son. i have since learned, primarily from adults living with the disease that a happy life is indeed possible. what i found most interesting about your second post was that you were in fact diagnosed with SMA1, that was not my assumption having understood you were in your twenties. was that ultimately a misdiagnosis, are you actually a 2?
    thank you for sharing your story.
    i hope a cure comes to us soon so that we can bask in the glory of a newly found appreciation for life.
    bless

    1. Hi Taylor,

      Thank you for reading my blog. I do in fact have SMA type 1, it was not a misdiagnosis. Please know that you and your son are not alone in this journey, and I hope you continue to enjoy reading my posts. I think we’re heading in the right direction in terms of finding a cure, it’s just a matter of raising awareness and funds. If you ever have any questions at all, please feel free to contact me at alyssasilva24@hotmail.com.

  5. Hi Alyssa, Keep the blog going..You have gone thru hell & back. You are a very strong person. I would be in a nut house if that happened..I’m a friend of your dad (high school buddies) he’s a great guy, and i’m sure your mom is a wonderful woman…I always wanted to ask him about your illness, but felt funny, I didn’t know how to approach it. You’re a very strong woman, and I would love to meet you someday….Peace~ Fran

  6. hi Alyssa, my name is Mikie. I don’t have SMA, but I am in a wheelchair from traumatic spinal injuries. yes I agree with, and can relate, to your “11 awesomes” and the “awkwards”. as for your accessibility issues on overseas trips, the ‘Bruno’ company and several other companies have a very good folding/extension mini ramp that fits in a backpack – it’s awesome, made of carbon fiber and aluminum. in addition to the awkwards list, how about the moment when our narrow swivel wheels get stuck in drains, elevator door tracks, sliding door tracks, doorway shoe cleaning grates, sidewalk cracks… I was crossing the road and when my swivels hit the seam in the concrete they got jammed so bad that I was spinning my drive wheels, blocking traffic for “what seemed like 2 hours” 20 minutes till the fire dep. came and had to chip away part of the road to lift my wheels out and let me get out of the roadway. red faced and super apologetic me, got on my way again.

    1. Hi Mikie, that’s quite an embarrassing story! I can’t even imagine that happening, what are the chances? Thanks for info on Bruno! I’ve never heard of that company before, but I’ll definitely have to check it out.

  7. by the way, did you ever get that wheel problem fixed? if not, then contact me via FB message I am a mechanical and structural engineer (I’m converting my other Hoveround MPV5 into an all terrain submersible project chair – so I can drive in to 3.5 ft. of water and go swimming/floating). I may be able to give some suggestions on repairing your equipment, from what I read, it sounds like the top swivel bearings need to be replaced, and I have found (through personal experience) that some “wheelchair” mechanics may be good with cars, but don’t know ‘jack’ about power chair stresses. I had to learn the difference the hard way (repairing my own chairs). the constant movement and weird stresses of all the mechanical parts require a different mechanical understanding than automobiles and other machines (i.e. the drive wheels/motors are constantly under angular pressures in all three ( X,Y,Z, ) directions, the swivel fork bearings get the same tri-angular torsion damage, the electrical systems get many variations in temperature per hour, and the batteries get heated, vibration, and the occasional impact from the chair running over uneven seams in the terrain. most mechanics don’t realize most power chair have no suspension system other than the tires themselves.

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