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Christina Cordaro started the topic Sleeping while Traveling in the forum Adults Living with FA 18 hours, 43 minutes ago
Does anyone else have trouble sleeping while travelling? No matter how tired I am, it is hard for me to get acclimated to a new atmosphere/environment and fall asleep soundly. There is nothing more frustrating than being tired and not being able to fall asleep. Does anyone have any techniques to help with this?
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Frankie Perazzola started the topic Favorite vacation spot in the forum FA Patients Under 20 18 hours, 54 minutes ago
Just going to say it- Ischia Italy is my favorite place. Paris was beautiful (I went when I was 16) and I love the coast of France!
Where is your favorite spot to go? It doesn’t have to be extravagant so don’t be intimidated to answer. Could be your backyard!
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Mary kelly replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 days, 18 hours ago
Hi can anyone give an update on how progressing with this drug
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Fi replied to the topic Handle Bars – Vertical or Horizontal? in the forum Assistive Device Usage 3 days, 9 hours ago
Personally I prefer the ‘L’ shaped rails in public toilets. But my real issue was that I prefer the railing to be on the right hand side. Something to do with how I balance I think.
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Clester replied to the topic Medical Marijuana in the forum Adults Living with FA 3 days, 16 hours ago
Anyone heard of or tried kratom? It’s a herb along the lines of Marijuana but you don’t smoke it.
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FA Forums Moderator started the topic We Shouldn’t Let Distance Weaken Our Bonds with Loved Ones in the forum Adults Living with FA 3 days, 16 hours ago
Sean Baumstark recently attended his friends’ wedding, which led him to reflect on how distance should not be a barrier to maintaining friendships. Read more from Sean here.
Do you keep in touch with friends who are far away? How do you do it and how often do you connect?
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Christina Cordaro started the topic Morning Routine in the forum Adults Living with FA 3 days, 18 hours ago
To start each morning, I like to feel a sense of accomplishment before I begin the day. So I make the bed, make coffee and have a nutritious breakfast to help give energy. What is your morning regime that gets you motivated to start the day?
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Frankie Perazzola started the topic Easy exercises during travel in the forum Adults Living with FA 3 days, 19 hours ago
I have been on vacation for almost 3 weeks now and still have another week to go. Between taking tours, non dependable Wifi to look up my usual at home exercise videos, and staying in the moment with my family, fitness and exercising has definitely taken a back burner. However, I know the importance of staying limber and doing what I can,…[Read more]
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Christina Cordaro replied to the topic Longing for the Sky in the forum Adults Living with FA 4 days, 10 hours ago
@jesusr I am religious too and I truly think God wouldn’t give us this battle (FA) if we weren’t strong enough to fight it. I truly believe there will be a cure someday.
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Jesus Rodriguez replied to the topic Longing for the Sky in the forum Adults Living with FA 4 days, 16 hours ago
I do consider myself to be hopeful. My faith helps me be hopeful. What I love about my faith, specifically in Christ, is that you can test and see that he’s faithful. For me being pessimistic is healthy to be just seek hope.
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FA Forums Moderator started the topic Longing for the Sky in the forum Adults Living with FA 4 days, 17 hours ago
Do you consider yourself a hopeful person? Why or why not?
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Frankie Perazzola replied to the topic Communicating with others-how to help you. in the forum Relationships & FA 4 days, 18 hours ago
Haha if only I could speak that fast. It generally happens pretty quick and before I even notice but thanks for the advice!
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Christina Cordaro started the topic “Furniture Walking” in the forum Assistive Device Usage 4 days, 18 hours ago
Since I am stubborn, I am trying not to use my rollator inside the apartment and only out in the public. I use the technique, furniture walking to have something sturdy to hold onto. The other day I grabbed onto a kitchen dining chair that was wobbly and I took a bad fall. Who else has transitioned to using a mobility and in your home and how did…[Read more]
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Jane Briscoe became a registered member 5 days, 8 hours ago
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Ellie Jame became a registered member 5 days, 10 hours ago
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Hello!
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… -
Hi Ellie! Thank you for signing up and welcome to the FA forum!
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FA Forums Moderator started the topic Restoring Frataxin May Help Cardiac Dysfunction in People with Friedreich’s Ataxia, 3D Models Suggest in the forum FA Research, Scientific News, & Clinical Trials 5 days, 17 hours ago
Normalizing the cardiac levels of frataxin via gene therapy or an alternative strategy could be an effective treatment for cardiac symptoms in patients with Friedreich’s ataxia (FA), as suggested by three-dimensional (3D) heart tissues made in the lab, a study suggests. Read more about it.
What do you think of this study and its findings?
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Christina Cordaro started the topic Working Adults with FA in the forum Working Adults with FA 5 days, 18 hours ago
Currently, I work full-time, 40 hours a week. Lately, I have been on the fence whether to switch to part-time due to energy levels and fatigue. Has there any one who has also been through this and how and when did you know it was time to make the switch?
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Jesse Rider became a registered member 6 days, 10 hours ago
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Hello Jesse!
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 impor… -
Hi Jesse! Thank you for signing up and welcome to the FA forum!
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Clester replied to the topic Accessibility at beaches in the forum FA Patients Under 20 6 days, 12 hours ago
Some of Michigan’s beaches have walkways out close to the waters edge.
Just came from Clearwater Beach in Florida and for free they have beach wheelchairs available. My wife for the first time got to get in the ocean(gulf of Mexico).
Extremely beautiful beach. Guess that’s why they call it America’s most beautiful beach. Pure white natural sand,…[Read more] -
Christina Cordaro started the topic How does FA affect your significant other? in the forum Relationships & FA 6 days, 18 hours ago
What is one thing that makes Friedreich’s Ataxia tough on your spouse or significant other? One thing that my husband, Justin struggles with is that I strive to be independent when things are becoming harder on me, For example, yesterday I worked, ran an errand, helped make dinner and then exercised on my stationary recumbent bike. I ended up…[Read more]
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Hi Jane! Thank you for signing up and welcome to the FA forums!
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]
Hey Jane!
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 our c…[Read more]