The frustrations of living with FA come in many shapes and sizes

The limitations of disability pose many unexpected issues for this writer

Sean Baumstark avatar

by Sean Baumstark |

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It’s usually easy for me to write about noticeable and significant issues related to Friedreich’s ataxia (FA), such as a severe hip injury or a new treatment option. Although I’ve written about seemingly insignificant, behind-the-scenes frustrations, a new one has taken center stage lately.

This season on Two Disabled Dudes, the podcast I co-host, we’ve added a brief mental health segment to our weekly episodes. In these segments, my co-host, Kyle Bryant, and I have discussed things that weigh heavily on our minds and emotions. Although neither Kyle nor I is a psychologist or mental health professional, we’ve found that talking about our concerns helps us better navigate them and reduces the pressure they present.

These conversations have helped me contemplate my circumstances. They don’t seem to be reducing my frustration, however, when the limitations of FA negatively affect my life beyond my health and physical well-being.

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As My Abilities Diminish with FA, My Frustration Grows

Difficulties with a storage unit

Several months ago, I purchased tickets to see a favorite comedian of mine, Brian Regan. Although I knew I’d designated a need for accessible seating, I couldn’t remember if I’d selected two seats in an accessible area or secured a space for a wheelchair and one companion seat. I couldn’t figure this out through my ticket confirmation, so to be safe, I made plans with a friend to meet after work in time to allow us to swing by my storage unit to retrieve my wheelchair. Since the facility is close to my house and allows 24-hour access, I thought my plan would work perfectly.

I was surprised to learn that the storage facility had recently changed its access hours without providing advance notice. Instead, they hung a sign on the gate notifying renters of the change.

I had to decide whether to skip the performance or show up and see what would happen. I realized I was taking a risk by making the drive to attend the show, but I figured I’d at least show up with my walker and hope accommodations could be made if my tickets weren’t ideal for my situation.

Thankfully, my tickets were for two seats, and my friend and I had a great time.

However, I thought about my last three cruises, where I used my wheelchair exclusively. Typically, I pick up my wheelchair after work the night before an early-morning flight. Had the storage unit’s access hours changed before my last vacation, I wouldn’t have known in time to secure my wheelchair for that weeklong trip. The problem likely would’ve had me in tears.

I can’t dictate how my storage facility operates, but I can find another facility to do business with. The frustration I’m feeling now concerns moving all of my belongings. Until a few years ago, I only needed help moving big, heavy things, such as my bed and dresser. Nowadays, I struggle to carry even small, lightweight items, and loading up a small moving truck using a ramp is out of the question. So although I want to move, I can’t do so until I’ve secured enough help to make the undertaking possible.

And that’s where my frustration lies: knowing that some things I want to accomplish are out of reach because of FA.

If you’ve read a handful of my columns, or even noticed the title of my column, you know I don’t let challenges keep me from accomplishing things. Although I pride myself on being tenacious and focused, it doesn’t make situations like this any less frustrating.

But it may allow for a sweeter feeling of achievement when the task is behind me.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


Gloria Digger avatar

Gloria Digger

I am 73 and just found out that due to all the falls I’ve been having l may have FA, but have not been told how to get a diagnosis, can you advice me please. Finding l may and from what I’ve read on the subject l believe I’ve had all my life. I recently had a bad fall whilst out walking and broke my hip, since the fall I’ve had a further 10 falls in 3 months.
I have had lots of falls all my life, followed by scans etc, just before l fall l have a strange feeling in my head hard to explain. Thanks for reading. Gloria


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