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How do you manage speech difficulties with FA?
Problems with speech in individuals with Friedreich’s Ataxia are very common, and it can make it hard to communicate. This is due to the abnormalities that develop when the muscles used for speech are abnormally weak, and it becomes difficult to control because we don’t have the ability to plan and execute the movements required for speech.
I particularly find it hard to get my words out and speak out loud when I am too fatigued or when I am in a very crowded and loud room and can’t carry my voice because it is too exhausting.
Do you experience speech difficulties with FA? What do you do in these types of situations?
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4 Replies
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Skyclarys has significantly helped with my speech. I noticed my speech is more clear and my voice does not crack as much. When I am too tired to speak, I honestly tell whoever I’m around “I’m sorry, I’m really tired, and go lay down.” When I hit my extreme fatigue mark my family and friends know I need down time. Thankfully everyone is so understanding because I’m so honest about it. Staying hydrated helps too.
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I am glad Skyclarys has helped improved your speech! It has helped me in that regard too.
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Have you struggled with nausea taking Skyclarys? I was nauseous for the first month then it subsided. Now I’ve hit the two year mark and I am struggling with nausea again. It’s odd, because it starts after I eat. It’s typically fast food that the nausea happens.
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It’s interesting that you mention that symptom has returned after your 2 year mark of taking Skyclarys, because I just hit my 3 year mark, and I also have returning symptoms.
I’ve never experienced nausea from taking the drug. I only feel it when I am very fatigued or have overworked myself.
I wonder if the nausea will subside if you change the time of day you take it? For instance do you take it in the morning, afternoon or evening? Also, do you take it an hour before a meal or two hours after a meal? Maybe do some trial and error if you haven’t done so already?
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