Moving forward, reluctantly, with retiring my service dog
I just began the process of getting my legacy service dog. A legacy dog follows a current service dog and is super important for those who rely upon these animals for independence. I…
Defining Yourself — Jean Walsh
Jean Walsh hails from Massachusetts. You will find a mental health perspective in her writing, reflecting her two mental health graduate degrees. She has years of work experience, the most pertinent being her experience as a grant writer. Jean was diagnosed with Friedreich’s ataxia (FA) when she was 19, and has been an avid FA volunteer since. She is 40 years into her journey with FA and so has a lot of experience to share with her shared FA, rare, and chronic disease communities.
Featured Post
Thanking my dad for the best advice I ever got
Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to…
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Telling my FA story is a complicated labor of love and advocacy
When doing patient advocacy, I’m frequently asked, “Tell me your rare disease story.” My initial response is to sigh on the inside. Why the sigh? After all, I’m fortunate to have been given a platform…
Finding a good primary care physician is challenging for me
During a recent drive home from an appointment with my new primary care physician (PCP), I felt a dark cloud dissipate that I didn’t even know was hanging over my head. The sun was…
My life is not boring due to FA, but it can be frustrating
Back-to-school season is almost here again. I see advertisements for it everywhere. Kids want clothes with sharks on them, teachers want kids with calculators, and parents want new backpacks (for their kids). Here in…
Grappling with opposing ideas in the disability community
I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us…
Feeling frustrated is a regular part of my life with FA
I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a…
The dangers of making comparisons between FA and other diseases
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not…
Living with disability makes everything more expensive
I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to…
Living independently looks different for those with disabilities
Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled…
This month and beyond, let’s cultivate our disability pride
I just finished reading “The Beauty of Dusk” by Frank Bruni. It is largely a memoir of his experience having a stroke that caused partial blindness in one eye. He must also…
Shoe shopping with FA is tough, but worth the effort
Recently I had to purchase shoes. I’ve always loved shoes and clothing, and I feel creative when I select an outfit that reflects who I am. Also, I simply feel better when wearing…
Medical trauma never goes away in life with chronic diseases
Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six…
