Isabelle Desmarais
Forum Replies Created
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Great! Thank you very much Jon. I will talk about it with my neurologist.
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Jon, Do you experience any side effects. Thank you.
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Hi Karina,
I am sorry, I didn’t want to depressed you. English is not my mother tongue language. Perhaps I didn’t choose the right words. I know FA is hard. I see you are fully activated by your work, friends, daughters, day to day life.
I also hate to feel the pity of others. That never was my intention or feeling in my post.
Isabelle
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Sorry, my mom concerns were about Karina post.
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Hi Victoria, I understand your concern and frustration. As a mom with FA (16, 23 years-old), it makes me sad and feel unfair the fact you don’t have your daughters anymore. Maybe you can not fight in justice but you can get in touch with her. . Overall, my reading of your post, I feel a lot of loneliness and isolation. Do you have access to local group with disabled people, and access to physical help at home, to make it easier? I encourage you to do so. Remember: you’re not alone, at least we (FA community) are here. 🙂
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I will talk about my case. I don’t know to which symptoms you refer but in my case, I am 52 and I don’t have still develop some symptoms. On the other hand, the fact that your parents don’t have the problematic gene is certainly strange. What does your neurologist say about it? Try to consult another neurologist to get a second opinion. Good luck.
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I already had a speech therapy, even if my disartry is very mild. It helps to be aware on how the speech disability get installed and to prevent increasing difficulties with speech exercises.
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Thank you for sharing this information. It’s great!
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I also a Catrike, model pocket. To make it easier to deal with the hill, I have installed an assistant electric wheel, trade BIONX. It provides 4 levels of assistance, and you can also choose no assistance at all.
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I steal drive. But since May 2020, my car has adoptive device for hand driving control. I really enjoy keeping my autonomy.
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I understand what you explain. In my place, in Québec, I have never experienced that kind of unrespectable attitude.
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I only wear running shoes for my walking safety and comfort. That means I no longer wear skirt or dress. It has bothered me for a long time but now I am used to it.
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Great ! Thank you Christina.
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Personally, I always check the adaptation before traveling, even asking for pictures of the bathroom. Bathroom being the big issue.
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Hi Frankie, I got my car adapted for driving with my hands in May 2020. It has been a long process including driving lessons with an adapted car from a school driving. I live in Québec,Canada so that might not be useful for you. But I really enjoy to keep driving safely and independently. I was very proud of myself, achieving that process.
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Yes Katherine, pins and needles also wake me up. After a while, my legs calm down and I fall asleep again. That’s why I stay in my bed so many hours … that way I feel more restful.
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I usually go to bed around 11:00 and I wake up sometimes around 6:00 and then, I try to fall asleep again. Whenever I sleep or not after 6, I mostly stay in my bed until 9:00, that helps me to feel restful.
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Sometimes, I would like to share or ask something to another participant, and I don’t know how, even with the columnist. Would it be possible to click the participant name and be able to write to him or to her? For example, I have read the last column by Kendall and I saw her picture at the end of her text,with her rollator which seems to be different. As I am going to get a new one, I would like to know the details about it. However I didn’t find out how to get in touch with Kendall. Another example, about the Chi machine, we are 3 people asking more information and it seems Grant Lile haven’t been notified about it. I suggest that the system automatically informs the author of a subject when someone is writing.
Another example, a few months ago, I write to you Frankie regarding your class of exercising and it seems you didn’t receive my message.
I really appreciate all your work, subjects, column, etc. It’s helpful and makes me not feeling alone with FA. (I do my best to write in English, please apologize for any mistakes). -
I regularly hear my feet and lower legs by using the shower with hot water. That maintains me feet warm for a while, wearing warm socks. Especially at night, when I go to bed. That helps me to fall asleep fast, otherwise my cold feet don’t warm up and keep me awake.
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Thank you so much To let me know about this device. Could you please explain me more about the benefits you have with the Chi machine? I am pretty much interested.
I leave in Québec,Canada and I see that it can be shipped over here. 🙂 -
Hi,would you please tell me more about the Chi machine? I do not know nothing about this device.
Thank you. -
It is exactly as you both describe. I’m living in Québec,Canada so you may imagine how winter time is hard for me.
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Answering to Frankie: I find the steps to interact with the others are limited and tedious. I am not an expert in IT but I figure that something else easier exists. Also, maybe it is a misunderstanding of myself about the way the forum works. Maybe you could explain the rules. For example, who is untitled to initiate subjects or ideas or any matters about FA?
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You guys are doing a wonderful job with all the subjects you put forward.
However because of the IT
platform, I find it difficult to interact with the others.