• It seems to me that life with FA is all about randomness. What abilities are affected when – are different for every single patient.

    I wrote about embracing chance and taking risks here: https://friedreichsataxianews.com/2020/05/13/physical-therapy-essential-service-pandemic-limitations

     

    What do you think?

  • Hey everyone! Hope you’re all staying safe and healthy out there.

    Ok, so I really enjoyed poetry in the past. During this time of lockdown, I was able to write about one of my favorite poems- which seems directly related to the lives of those of us with chronic diseases.

    Check it out here!

    What do you think? Do you enjoy r…[Read more]

  • Matt Lafleur posted a new activity comment 3 years, 8 months ago

    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]

  • Welcome Christina – so excited for you to offer us your unique perspective – especially as a married person and as a worker in the health field, while having FA! I can’t wait to read more of your topics!

  • Matt Lafleur posted a new activity comment 3 years, 8 months ago

    Hey Roman,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Lola,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Paul,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Rhonda,
    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 Sally. A program I recommend is Dragonspeak.What specific issues is she having though?

  • If I go to a restaurant with good company, and we stay at the table after the meal is finished, or if I go somewhere for breakfast/brunch, I really enjoy a hot coffee.

    However, hot coffee is not an easy task for us FAers.

    What I normally do is to order  the coffee in a to-go cup. I find it easier to manage a disposable cup than a glass…[Read more]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Fay,
    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]

  • Frankie Frankie Frankie,

    I just scrolled on this and laughed out loud. I’ve been in quite a few weddings and what you describe has never happened to me, but that is something that definitely would.

    I know I’m a jerk but LOLOLOLOL

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Emily,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Sara,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey there,
    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]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Carolyne,
    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…[Read more]

  • Matt Lafleur posted a new activity comment 3 years, 9 months ago

    Hey Alex,
    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]

  • One thing I was surprised about at my yearly cardio check up was how much the doctor was in favor of my smart watch.   He thinks it is great the way he can access the history from my phone and see my heart rate throughout the day. I never really considered this to be a big benefit to doctors.

    Do you have a smart watch? What kind is it? Do…[Read more]

  • Even though getting your heart checked every year is strongly recommended for all FA patients, I’ve only been doing them for the past three years. Before that I didn’t know it was recommended.

    I had my cardiologist appointment this week. They performed a sonogram on my heart and an EKG. The doctor was thankful I have an Apple watch, as it…[Read more]

  • I saw this video last night, and it stuck me:

    https://www.youtube.com/watch?v=rBpaUICxEhk

    I love the idea that life is more a dance or a song, than a means to an end. Making the best of each moment seems especially relevant to us with FA.

    What do you think?

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