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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months ago
About one week. Hearing improvement is on the list too now👌🏼☺️
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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months 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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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months ago
I can film my toes😆
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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months ago
And also I must mention that the price is 1/3 here compared to the US🙈
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Mohammed replied to the topic Being Diagnosed with Friedreich's Ataxia Made Me Doubt God in the forum Living with FA 3 years, 5 months 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 🙂 -
Mohammed replied to the topic Being Diagnosed with Friedreich's Ataxia Made Me Doubt God in the forum Living with FA 3 years, 5 months 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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Mohammed started the topic Misc. Boating/ fishing in the forum Assistive Device Usage 3 years, 5 months 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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Mohammed replied to the topic Romantic relationships in the forum Relationships & FA 3 years, 5 months 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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Mohammed replied to the topic Romantic relationships in the forum Relationships & FA 3 years, 5 months 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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Mohammed replied to the topic Romantic relationships in the forum Relationships & FA 3 years, 5 months 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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Mohammed replied to the topic Medication in the forum Parents & Caregivers of Those with FA 3 years, 5 months ago
Thanks for replying ,much appreciated 👍🏽
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Mohammed replied to the topic Romantic relationships in the forum Relationships & FA 3 years, 5 months 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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Mohammed replied to the topic rideATAXIA Dallas in the forum Living with FA 3 years, 5 months ago
I’ll be there also
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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months 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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Mohammed replied to the topic Brand of assistive devices in the forum Assistive Device Usage 3 years, 5 months ago
I’m looking at new walker. I think its called U Step. Any feedback?
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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months 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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Mohammed replied to the topic Writers with FA in the forum Living with FA 3 years, 5 months 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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Mohammed 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 3 years, 5 months 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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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months ago
Hmm I don’t know what happened, sorry lol:
https://drive.google.com/file/d/1Q4zZ8NIcMFszr310LC250ajPNJ1t9cOY/view?usp=sharing
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Mohammed replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 3 years, 5 months ago
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I love everything about this! Thank you for being so accepting and realizing certain things are possible with some adjustments!