SMA and Progression: Do What You Love While You Can

SMA and Progression: Do What You Love While You Can

SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience.

About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have been driving it even before then. It had come to the point that I had to obsessively make sure that the chair had been turned off when I wasn’t driving it, just in case my hand became weak and accidentally dropped on the controls, which could possibly have hurt someone else or me.

I often had to choose between driving the electric chair and feeding myself.

Drive the chair around for a couple of hours or have enough energy to function the next day? Or even the whole next week.

Drive the chair or draw/write?

I couldn’t have both. And driving myself was really no longer working the way it was supposed to. There was no more zooming around the mall. In fact, I could barely handle the chair in its lower speeds. The chair weighed close to 400 pounds, making it nearly impossible to manually push around.

Essentially, it wasn’t serving any helpful purpose to me anymore.

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So, bye-bye electric wheelchair. We had a good time together. I miss what you used to be to me, but I don’t miss what you had become: a struggle — one that I came to dread.

Another thing that I am sure will be ending soon is my art. I used to draw a lot; tattoo designs are my favorite. When I was trying to sketch out a logo for my website, however, I got something workable, but the process was so hard. And the sketch is still not necessarily done.

My wrists were stiff after about 30 minutes of it — stiff enough that I decided I needed to do an extra set of stretches. And then I needed to actually relax and do nothing until supper, or I would not be able to feed myself. Someone in my family would feed me — that’s not an issue — but I still want to do it myself, partly because I’m stubborn. I also like my independence.

Growing up with SMA, we know that eventually this disease will take a number of things from us. Sometimes, like with the electric wheelchair, I was OK with the idea. Ultimately, I decided to stop driving. Yes, it was becoming too hard, but I made the call to change over to a manual chair.

Drawing? I don’t really get that decision. It’s something I love and it is being stolen from me.

This is not meant to make anyone feel bad for me, but to say that if you are passionate about something that feeds your soul, do it. Do it before you can’t anymore.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

2 comments

  1. Patricia Panzarino says:

    Great article. I’m wondering if you explored other options with driving your power chair? I have a mini joystick that sits in the middle of my lap just above it. It can be placed anywhere. They also have puff and sip controls. Not trying to get all up in your business but I am almost 60 years old with SMA type II and had to do a lot of creativity to do the things I want to do. Sure, I have lost functioning and activities. For example I was a keyboard player in several bands and right after my husband and I recorded a full-length original song CD I lost the ability to play which made me sad but I still sing.

    • Kala Godin says:

      Hi Patricia! I was actually using the lightest/easiest controls for the electric chair, so any other physical device wouldn’t have worked for me. As for the sip/blow controls, I have weak lungs and prefer to save my energy.

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