I don’t intend to do virtue signaling, and I hate how mass media does it so much these days in the politco-social context.
But I will live my best life now, which involves hope for a treatment. Far from being just virtue, it is also a pragmatic response. Hope is a positive attitude, and this kind of positivity lets the chemical functioning of the…[Read more]
Frankie, I am 36, had symptoms of FA at 5 years old. I have used a scooter or wheelchair for more than 10 years. I am a Bible believing Christian, a born-again Christian, have placed my faith in Jesus Christ, who is the visible expression of an invisible God, or however one wishes to describe this faith. I also completed a Master of Arts in…[Read more]
As someone with FA who currently has COVID-19, I am glad the prospect of getting a vaccine is over for me.
When I went in to the hospital the other day to get tested, they also gave me the Trump treatment, that synthetic antibody that starts with a B. I still feel bad but was able to work some, and now I’m at the computer typing. I am way more…[Read more]
What works for me, actually works, 8s calorie restriction. It works for everything except going to the gym. I am an artist and need long, focused time doing my work. Skipping even lunch helps. I sometimes will just have a cup of tea and add honey for nourishment. Even fasting is beneficial. Look it up. I think some monkeys on a restrictive diet…[Read more]
It is your choice to make, but I can tell you how it worked for me.
I used a plain folding walker for close to ten years, starting at 22. When my stability declined even more, I was determined to make the walker remain my only tool. I would be so exausted every evening and would often get on my bed at night and cry. If I had to get back up to go…[Read more]
I realize the importance of protein, so I get your questioning. I have been taking a whey isolate, so I aware of its benefits. For the last year, I have been cutting back on my protein supplement and the protein I eat. Now, I only take 20 g in the evening, not post workout, and instead I do a small snack. I have had good results.
I was given no other thing. But I will tell you what helps me the most – yoga before bed. I don’t walk any more, so there a certain things to difficult, but if you have enough stability, it should be no problem. I would have an evening routine where I’d do stuff like downward facing dog, hold it for three minutes. I still do the streches I can…[Read more]
Oh yeah, about change. I was noticing that the placebo effect for the Omav trial remained roughly with the drug for the first four weeks. Since this is purely mental, image what the human spirit is capable of. Of course you can gain back what you lost in two months.
This happens to me. It feels kind of like the protein in my muscle is breaking down too fast, which it probably is. So, I will take a hydrologized whey supplement. It works for me. I also do this before and after my morning workouts.
Lisa, I started using an electric scooter 13 years ago, sparingly at first, for just long distances. I am 34. Now, it’s like second nature. I keep my legs and hips and things in shape by swimming and doing little skyways and stuff. Maybe your son will one day realize the vanity of his pride or caring what others will think, or whatever else h…[Read more]
Frankie, I have no idea how to respond to your reply, and I can’t even see the comment on the discussion board. Perhaps an error?
Anyhow, the first things I noticed after being gluten free: one, my sleep apnea almost disappeared. It’s not like I’m overweight. I’m 6′, 165 lbs. But I began to sleep the whole night through for a first in a while.…[Read more]
You did perfectly! You know, I have been experiencing a lot of what you are talking about.The inflammation and sudden urgency of going to the bathroom are pretty big for me. Sounds like I need to go back. Im happy so many things changed for you!
I saw this post and decided to join so I could reply.
I am 34 and have had a slow steady decline for 25+ years. Four years ago, I went gluten-free unintentionally and began to see improvements in my physical performance and stamina. Even my mental performance was improved. Contaversly, when I ate gluten, all these improvements. Then,…[Read more]
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…
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.