By

Lily Pierce
At least, they shouldn’t be. But here we are… Why is the use of medical devices stigmatized? I recently found out someone I know has been struggling with their mobility. Rather than sink to the level of using a walker or wheelchair*, they choose to stay home most days. It’s sad to me when people...
Healing Journey , published by Lily Pierce February 3, 2024 The last few weeks have marked the start of a new year but also brought a lot of change for me, at least in my day-to-day life. For several years now, I’ve worked out in a gym with a physical trainer. But at the end of December 2023,...
I recently wrote an article about my disability journey for my local newspaper. Click here to check it out! A young man about to graduate from a nearby school with a physical therapy degree then contacted me; serendipitously, when the article was published, he was working on a project that involved interviewing patients with neurological conditions....
Last weekend, I attended the Friedreich’s Ataxia symposium in Philadelphia, PA for the first time since before the pandemic. My dad and boyfriend came for physical and moral support. The event line-up hasn’t changed in a while. (Click to read about the 2019 symposium.) The weekend began Sunday with a rideATAXIA fundraiser, followed by a meet &...
We pressure ourselves to fit into a particular ideal and be able to do certain things. For each of us, the standards vary. For the highly athletic person, perhaps it’s running X miles a day. For the average person who exercises, it may be the ability to lift X pounds on certain machines. For a NON-gym...
I’ve watched plenty of relationships having disagreements unfold in real life and on reality shows. Like a lot of people, I become an amateur family therapist in those moments. I quietly observe misinterpretations and miscommunications happening in real-time. Someone takes something the wrong way and responds in an angry tone, then the other person becomes defensive;...
You can read Lily’s previous article HERE.After taking the new medicine called Skyclarys for Friedreich’s Ataxia for a little over one month, I can share some updates and observations. Like the condition itself, these meds affect each patient differently, and our experiences all vary. I haven’t noticed any changes to my balance and coordination, two...
As I write this, I’m on my second day of taking the only FDA-approved medication for Friedreich’s Ataxia – Skyclarys, also known as Omaveloxolone. Friedreich’s Ataxia is a rare condition that causes progressive damage to the spinal cord, peripheral nerves, and the brain, resulting in uncoordinated muscle movement, balance issues, walking difficulties, and more. It’s...
Hi, friends. For those who struggle with standing, balancing, or walking due to illness and/or old age, daily minutiae can become a huge burden once the leg and hip muscles atrophy. Using the toilet, taking a shower, simply getting from point A to point B–every little obstacle is a mountain. While the progression of time or disease...
At age 16, I was diagnosed with a genetic neurological disorder called Friedreich’s Ataxia. I’d been experiencing symptoms since age 11 with no logical explanation up to then.  I staggered when I walked, I couldn’t carry a cup of water, and I dropped things a lot.  But little did I know that my body cells…….....
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My purpose

michael mantz
To continuously empower others on building healthy lifestyles where personal/spiritual growth is prioritized, the pursuit of positive mind-body change is valued, and the notion of making the most out of life is a core motivation. In addition, to raise overdue Ataxia Awareness and spark meaningful perspective shifts that both present-day society and future generations can mutually benefit from.

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