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Lynn

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    About one week. Hearing improvement is on the list too now👌🏼☺️

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    Gunnhild, please give more information about those who started the drug-age, when they were diagnosed, physical condition …..and the supervising physician what kind of research will be performed during the time of taking the medicine?

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    I can film my toes😆

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    And also I must mention that the price is 1/3 here compared to the US🙈

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    Lynn replied to the topic Being Diagnosed with Friedreich's Ataxia Made Me Doubt God in the forum Living with FA 2 years, 1 month ago

    Glad she is ok! Must have been so scary.
    Don’t worry about preaching. Its just fine.When I truly believe in something I tend to “preach” about it too 🙂

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    Lynn replied to the topic Being Diagnosed with Friedreich's Ataxia Made Me Doubt God in the forum Living with FA 2 years, 1 month ago

    Romans 8:18 I consider that the sufferings of this present time are as nothing compared with the glory to be revealed for us.

    The question of where is God and why is he doing this to me is one that has popped into my head many times in the years since my diagnosis. As I started to pay closer attention to the things that are part of the faith and…[Read more]

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    Lynn started the topic Misc. Boating/ fishing in the forum Assistive Device Usage 2 years, 1 month ago

    Found out a few years ago my wife liked to fish. Started out with a cane pole ( all she had to do was lift it). Decided to see about boating . she liked it but getting someone wheelchair bound in and out of a boat can be quite difficult. So I made a mount for my boat to attach a hoyer lift to . worked great.took things one step further and…[Read more]

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      Frankie Perazzola replied 2 years, 1 month ago

      I love everything about this! Thank you for being so accepting and realizing certain things are possible with some adjustments!

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    Lynn replied to the topic Romantic relationships in the forum Relationships & FA 2 years, 1 month ago

    My wife did it and she was in a wheelchair when she had the second one. If you have someone to help which it sounds like you do you have as good a chance of raising good kids just as anyone else. Actually you probably will do a considerably better job than most people …because of the fa. You will have a much better handle on what is important in…[Read more]

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    Lynn replied to the topic Romantic relationships in the forum Relationships & FA 2 years, 1 month ago

    @toolman I don’t think I’d be able to handle pregnancy or carrying a newborn around or all the things babies require. I’ve thought a lot about it

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    Lynn replied to the topic Romantic relationships in the forum Relationships & FA 2 years, 1 month ago

    Some trials I’ve been going through are too many to mention . most of which revolve around non supportive family. I have lost everything trying to be there for my wife . and I do mean everything….friends ,family, business, retirement, most recently had a small stroke and hernia so my health is included, so much stress and absolutely no help from…[Read more]

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    Lynn replied to the topic Medication in the forum Parents & Caregivers of Those with FA 2 years, 1 month ago

    Thanks for replying ,much appreciated 👍🏽

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    Lynn replied to the topic Romantic relationships in the forum Relationships & FA 2 years, 1 month ago

    My boyfriend & I dated for almost two years before my symptoms were severe enough to start asking questions. I’ve literally always just thought I was a clutz. I’ve been diagnosed for about 3 years now & he is literally the only person I feel 100% safe with. He can tell when I’m fatigued or getting frustrated. I know I am very lucky to have someo…[Read more]

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    Lynn replied to the topic rideATAXIA Dallas in the forum Living with FA 2 years, 1 month ago

    I’ll be there also

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    Me too😭😍 Scared to believe it.
    The norwegian drug has dosage recommendations down to 6 year olds.

    There are a few side effects so everybody should really look into it before deciding to try.

    The two people taking it now dont have side effects at this point. So fingers crossed!🤞🏼

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    Lynn replied to the topic Brand of assistive devices in the forum Assistive Device Usage 2 years, 1 month ago

    I’m looking at new walker. I think its called U Step. Any feedback?

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      Frankie Perazzola replied 2 years, 1 month ago

      U step. Hmm Never heard of it. Where are you located?

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    Yes they both did! We almost dont dare believing it! Energy, improved speech, toe wiggeling, normal temperature and colour in feet and hands, stronger, improved balance… I’m very excited to try for myself. I hope I dont have any side effects that stop me from taking it and fingers crossed for some effects🤞🏼

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    Lynn replied to the topic Writers with FA in the forum Living with FA 2 years, 1 month ago

    Thank you for mentioning me although I dont see myself as a writer really. I just read your last article. Now that is writing! 🙂

    I started my blog having a wish to share some practical tips about managing FA. My education is physiotherapist so I thought it could benefit others.

    In 2012-2013 my depression, fatigue and anxiety increased very…[Read more]

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    Lynn replied to the topic Frataxin Deficiency in FA May Ease by Raising Protein's Levels, Early Study Says in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    Here is the full paper, if anyone is interested in reading: https://drive.google.com/file/d/1qaEvn_0GQAbyvI0nVcaXGpaD7beigj8R/view?usp=sharing

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    Hmm I don’t know what happened, sorry lol:

    https://drive.google.com/file/d/1Q4zZ8NIcMFszr310LC250ajPNJ1t9cOY/view?usp=sharing

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    Lynn replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years, 1 month ago

    If anyone would like the full journal article (only the abstract is available for free), I have linked it here. 🙂 Science should definitely be accessible to everyone and I love that FAN takes the time to report on these articles.

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