Man angry on fire flames behind him

The Frustrations of Broken Equipment

When living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about you, but I always experience these issues at inconvenient times.

Recently, my girlfriend and I headed out for a day of errands and dinner. This is the extent of excitement for a middle-aged couple.

Ramp issues in my accessible van

When we got to our first stop, I pushed the ramp deploy button in my accessible van. The door opened but the ramp didn't come out.

I have an in-floor ramp. This issue with the ramp not deploying happens once in a blue moon. I think, no big deal, and hit the button again. Usually, the sliding door closes and I try again. This time that didn’t work. Nothing happened.

We then proceed to turn the automatic door off and my girlfriend tries to close the door manually. It won’t budge. This particular day was quite nippy.

I’m now getting annoyed. We can’t put the van into gear to drive when the door is ajar. We are officially stuck.

Stuck in the van with these issues

I can’t get out of the van because we have my electric scooter which is too heavy for my girlfriend to pick up. I am sitting in the front passenger seat with the heater on full blast as we wait for AAA.

AAA shows up and the tow truck driver tries the door. He’s a strong guy but he’s also having a hard time closing the door. After about 5 minutes of tinkering with the factory automatic door switch, he’s able to manually close the door.

Equipment issues make me frustrated about having SMA

Now we are able to drive home but our outing was ruined due to failed equipment. This is where I really get frustrated about having SMA.

I live outside of Philadelphia. The closest wheelchair van mechanic is about 45 minutes away. I don’t know about everyone else but these places are always backed up. I’ve never been able to get an appointment within a day or two.

This last event was no different. I had to wait a full week before they could get me in. This isn’t a huge deal because I’m no longer able to drive.

I also have a manual wheelchair that we were able to use in the meantime. However, I find it frustrating that there are very few options when it comes to repairing the equipment that we need to have our independence.

Tips for navigating equipment repairs?

I’ve also experienced poor customer service with some medical equipment suppliers. This befuddles me. You would think people get into this type of business because they genuinely care. Unfortunately, that’s not always the case.

I’m always curious as to your experiences, tips, or tricks when it comes to navigating repairs for your equipment.

How much preventative maintenance do you do? Are you someone like me who generally doesn’t go to these places until it’s absolutely necessary? Has anyone ever gotten so frustrated that you actually started your own company? I sometimes wish I had the financial means to do that.

By providing your email address, you are agreeing to our privacy policy.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.

Community Poll

Do you have unanswered questions about SMA treatment options?