-
Christina Cordaro started the topic FDA Approval Letter – Omaveloxolone in the forum FA Research, Scientific News, & Clinical Trials 13 hours, 27 minutes ago
The deadline to sign this letter was this past Wednesday, January 20th. Over the past two weeks, people living with FA, their family members, their friends, their healthcare providers, and their advocacy organizations came together and produced 73,000+ signatures!
In the next few weeks, the FARA (Friedreich’s Ataxia Research Alliance) team will…[Read more]
-
Frankie Perazzola started the topic Favorite snacks in the forum Nutrition, Supplements, and Exercise 1 day, 5 hours ago
We all have them. Let’s hear them. My guilty pleasure is hot Cheetos, what about you?
-
Christina Cordaro started the topic Hearing Loss in the forum Living with FA 1 day, 13 hours ago
Is anyone here affected by hearing loss due to living with Friedreich’s Ataxia?Do any of you wear hearing aids and if so, what kind do you have? Do they help positively or negatively?
-
Katherine replied to the topic Socks in the forum Living with FA 3 days, 2 hours ago
I like Toeease yoga socks, but if it’s warm enough inside, I’m usually happier being barefoot – my feet have plenty of friction with the floor, and it makes it easy to do toe exercises while I’m waiting for web pages to load, or whatever.
-
Karina Jeronimides replied to the topic Cupholders for wheelchairs and walkers in the forum Assistive Device Usage 3 days, 4 hours ago
Hi Frankie! Yes, I have cup holder in my power chair, and I used it to hold me phone:) It’s quite handy. When I go out, I can hang my purse off the phone – the hook in my chair is really far back and hard to reach. So this is a better set up. I fill four glasses with water and leave them in my kitchen. This reminds me to drink that much…[Read more]
-
katie replied to the topic Wheelchair Preference in the forum Assistive Device Usage 3 days, 6 hours ago
i’ve had a rigid ki tsunami for nearly ten years. (i have a forward brand seat cushion and another brand for the back cushion.) the last two chairs built for me had to be sent back. in order to do transfers i have to be able to get the chair close to the couch, for example, and folding chairs have an angle on leg rests that makes this impossible.…[Read more]
-
Frankie Perazzola changed their profile picture 3 days, 8 hours ago
-
Frankie Perazzola started the topic Cupholders for wheelchairs and walkers in the forum Assistive Device Usage 3 days, 8 hours ago
One thing that has made life a lot easier is installing a cup holder on my walker. Before that, I would place items on my walker and because of my instability, they would usually knock over and spill.
Do you have a cupholder on your device? How has that benefitted you?
-
Christina Cordaro started the topic Anxiety and FA in the forum Living with FA 3 days, 13 hours ago
With FA, it’s hard to tell if it will be a good day or bad day. When I am having a bad day relating to FA, I tend to have random emotional outbursts that leads me into having a breaking down. This usually happens when I am overworked or fatigued.
Does this happen to anyone else and how do you cope with it?
-
Christina Cordaro started the topic MLK Day in the forum Living with FA 4 days, 3 hours ago
This is my favorite Martin Luther King quote that reminds me of what it is like to live with FA. Each day I like to celebrate my small victories and what I accomplish.
What’s you favorite MLK quote and why?
-
Becky cook replied to the topic Describing FA to others in the forum Relationships & FA 1 week ago
I tell them what kind of like m.s and most of them get it.
-
Marian McDonell replied to the topic Coronavirus vaccine in the forum FA Research, Scientific News, & Clinical Trials 1 week ago
I received the Moderna vaccine onJan. 11/21 and I’m doing OK.
-
Frankie Perazzola started the topic Socks in the forum Living with FA 1 week, 1 day ago
No matter how hot it is outside. i always have socks on. It gets dangerous walking around the house.
Does anyone have recommendations for grip socks?
-
Marian McDonell became a registered member 1 week, 1 day ago
-
Hi Marian,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more]
-
-
Christina Cordaro started the topic Walking Stick vs. Cane in the forum Assistive Device Usage 1 week, 1 day ago
Who here on the forums has used or uses walking stick? I hear it has more stability than a camera and it truly helps with balance when walking since it is as tall as you.
Does anyone have any good recommendations for brands or styles?
-
Grant Lile replied to the topic Wheelchair Preference in the forum Assistive Device Usage 1 week, 2 days ago
My preference is a manual wheelchair. I find it easier to get in position for transfers. And it makes for a good work out on my arms.
-
Christina Cordaro replied to the topic Describing FA to others in the forum Relationships & FA 1 week, 2 days ago
I say it’s a neurological disorder that affects balance, loss of coordination and speech. Also, I have started to use a walker to help keep me safe.
-
Christina Cordaro started the topic FDA Approval Letter – Deadline is January 20th in the forum FA Research, Scientific News, & Clinical Trials 1 week, 2 days ago
Thank you to everyone who signed, wrote a statement, and shared this effort. There has been 38,000 signatures and we are in our last week (deadline is January 20th)!
Click here to read and sign the letter: http://www.curefa.org/advocacy
*This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the…[Read more]
-
Frankie Perazzola started the topic Describing FA to others in the forum Relationships & FA 1 week, 3 days ago
I always have a tough time describing exactly what FA is when other people ask me. Over the years, my divorce and what are usually say is that my muscles are deteriorating over time.
How would you describe FA to someone who has no idea what it even is?
-
Christina Cordaro started the topic Auditory Processing in the forum Living with FA 1 week, 3 days ago
Lately, I have been noticing my hearing is becoming more affected due to FA. I am having trouble listen accurately, keeping my focus, and difficult with speech (whether it is getting my own words out or understanding other people’s words). It is extremely frustrating because I try my best to pay attention and use my energy to do so.
Does anyone…[Read more]
- Load More