Activity

One of the biggest decisions we have to make as a person with FA is when to use a wheelchair full time.

Most of us are extremely stubborn (hi, there) and try to hold off as long as possible. Sometimes overlooking physical and mental safety.

For those of you who are full-time wheelchair users, window do you know? What was the indicator that you…[Read more]

My favorite two brands to wear when I work out is Under Armour and Nike. I especially love the Nike 2 in 1 Tempo Luxe Shorts especially when I ride my trike. The compression shorts for the inner layer helps me move comfortably and is lightweight.

https://www.nike.com/t/tempo-luxe-womens-2-in-1-running-shorts-PfLl8r/BV2955-318

Do you have any…[Read more]

For me, I can’t live without my handle bars in my ADA shower or my rollator. They both make me feel most safe and help me prevent from falling. How about you?

Well, cats out of the bag. I did a segment for a show called The Balancing Act on Lifetime Network and it’s all about Fredreichs ataxia.

It’s mostly about my diagnosis story but it breaks down FA in a way that most people can understand. Check it out and let me know what you think!

I know that everywhere in the world with different with their lockdown policy number just looking for an update. How is it where you live? Are you guys starting to reopen? Are you nervous about re-opening?

The Friedreich’s Ataxia Research Alliance is getting closer to full enrollment in October:

Retrotope is seeking 25 additional participants, ages 12-50, in a clinical trial for the drug RT001, which is designed to protect against lipid peroxidation, the process that is believed to cause disability in many neurodegenerative diseases, including…[Read more]

This major event is only 3 days away! To raise awarensss and honor the day, FARA and rideATAXIA came up with a campaign to kick it off with The Global Challenge. To learn more, watch the video below:

One of the best way to that helps me mellow out and meditate is listening to music through noise canceling headphones. This puts me in a space where I can focus on the task at hand and I send my body.

I think that the noise canceling part really helps because I am able to zone out and really grasp what I have to do next.

How about you? When you…[Read more]

For me, my favorite time of year is fall. I love that weather is becoming cooler and all the activities involved- apple picking, festivals, haubted hayrides, and more!

Now that I am using a wheelchair more frequently, I am afraid some of these activities are not as ADA friendly. Do you have any tips to still partake?

One thing I think we can all agree on is that we experience moments where we fall. For me, every time I fall it ends up being catastrophic just by the way I tried to catch myself.

It feels like I’m trying to help but once I start moving, my body doesn’t agree and fight back with every movement I try. When I don’t get hurt, it’s actually really…[Read more]

All of us have something that we crave from time to time and are obsessed with. When it comes to food, what are some of your guilty pleasures?

My guilty pleasure is a hot Cheetos! That’s my favorite snack and has been since I was a kid.

Lately, I have been noticing I have been having a difficult time with food prep and cutting vegetables. The dexterity in my hands makes me unstable and uncomfortable.

Do any of you have life hacks when it comes to food prep? Do you use any tools or devices to make the process easier?