Members - Friedreich's Ataxia News Forums

Katie Griffith

Member

July 25, 2022 at 4:11 pm in reply to: DMF- Dimethyl Fumarate

Hey, Ray! Hmm this is the first I have heard of it. Have you started it yet? Noticed any improvements?

Katie Griffith

Member

July 21, 2022 at 8:22 pm in reply to: How do you manage fatigue?

I tell my son to only do what he has to do, not to beat himself up for sleeping in, and have grace for himself when he can’t do the extras. He is hard on himself but compassion for yourself is a lesson to be learned.

Katie Griffith

Member

July 12, 2022 at 1:41 pm in reply to: Disability Pride Month and “Crip Camp” Documentary

I haven’t watched it yet. I will put it on my list!

Katie Griffith

Member

May 31, 2022 at 1:14 pm in reply to: Balance

I haven’t ever heard of a vibration machine, Kelly. Is this something you use at home?

Katie Griffith

Member

May 10, 2022 at 8:15 pm in reply to: Describing FA to Others

Love hearing y’all’s perspectives!

Katie Griffith

Member

May 10, 2022 at 2:03 pm in reply to: Describing FA to Others

I usually say it is a neuromuscular disease that affects my son’s speech and balance, and if no treatment is found, then he will lose his ability to walk over time.

Katie Griffith

Member

May 3, 2022 at 9:32 am in reply to: Have you ever hosted a grassroots event?

We have never hosted one ourselves but many years back, before my son was diagnosed with FA, we volunteered at our friend’s 5K to raise funds for SMA.
I know it takes a lot of work! Best wishes for your event!

Katie Griffith

Member

April 27, 2022 at 8:46 am in reply to: What TV series helps you relax the mind?

I just finished watching all 11 seasons of 7th Heaven! It was my downtime show during the day when I was folding laundry. I’m looking for another now to replace it!

Katie Griffith

Member

April 25, 2022 at 7:49 am in reply to: Diagnosis Journey

Thank you for sharing your experience! You are an inspiration 😊

Katie Griffith

Member

April 19, 2022 at 8:18 am in reply to: Supporting Friedreich’s Ataxia Research, One of Sip at a Time

Love this! I love seeing how people get creative in making products that are useful and fund research. Win-win!

Katie Griffith

Member

April 13, 2022 at 2:56 pm in reply to: The Chi Machine

Interesting! Has anyone else been able to try this machine?

Katie Griffith

Member

April 13, 2022 at 2:50 pm in reply to: Service Dogs

We are still waiting to be called for Noah’s service dog training. If you have a service dog, how long was your wait?

Katie Griffith

Member

April 13, 2022 at 2:47 pm in reply to: Cupholders for wheelchairs and walkers

My son has a Drive Nitro walker and keeps having trouble with the cup holder coming off! I bought the Drive specific one but not sure how to make it stay on.