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Isabelle Desmarais replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 2 days, 3 hours ago
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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Karina Jeronimides replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 2 days, 4 hours ago
Hi Isabelle,
Your reply has really depressed me. I see my daughters, we also text and call. i have an aide twice per week to help me get ready for work. i just had lunch with handicapped friends. My students are adorable. And yes, this disability is tough. I have many odds against me. But i rejoice in still being able to live alone and t…[Read more]
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Grant Lile replied to the topic How do you manage your affected speech? in the forum Living with FA 5 days, 5 hours ago
I’m looking into a therapist for my slurred speech, but am concerned it will never improve because of the Ataxia. I’m currently looking for copywriting work but can’t get through the interview process. So does a therapist help?
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Isabelle Desmarais replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 5 days, 11 hours ago
Sorry, my mom concerns were about Karina post.
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Isabelle Desmarais replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 5 days, 11 hours ago
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…[Read more]
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Karina Jeronimides replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 6 days, 4 hours ago
When on Facebook, I love reading the FA group messages, but they also depress me. I love it when I can help someone out, but otherwise, it gets me down to read how others are so miserable and the tons of issues that we must or will have to deal with. It kills me to think that soon I will lose my independence and be forced to live in an i…[Read more]
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Matthew Lafleur replied to the topic How do you cope with everyday life having FA? in the forum Living with FA 1 week, 1 day ago
I feel this so much, Victoria. Even though our circumstances aren’t exactly the same, we both are diagnosed with FA so your frustration is incredibly familiar to me. I think that connection is what keeps me going. For a long time, it seemed like my FA was only my problem. I wasn’t in contact with many others, diagnosed with the same disorder. That…[Read more]
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JD became a registered member 1 week, 1 day ago
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JD became a registered member 1 week, 1 day ago
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Victoria started the topic How do you cope with everyday life having FA? in the forum Living with FA 1 week, 4 days ago
I don’t and I’m a pretty negative person I wish I could be positive and confident and just happy. Sometimes I really wish I could just some how leave, i hate that my husband and our girls have to watch me detirerate, things seem come and go in stags my chocking started to become noticeable 2010( it càme years before obviously but not enough for…[Read more]
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Victoria replied to the topic November is Bladder Health Month in the forum Living with FA 2 weeks, 5 days ago
I’ve been on amitriptyline for about 6 years each time my GP puts the dose up my urgency lessons but the past few months it’s gotten so much worse just during the day time, I have never really had I to go at night we’ll when I was pregnant i did, but anyway my husband has been putting towels folded up to sit on. It’s pretty embarrassing I feel…[Read more]
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Jason Ambrose became a registered member 2 weeks, 6 days ago
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Dr Andrews Claris became a registered member 3 weeks, 6 days ago
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Katie Griffith started the topic Celebrate! in the forum Living with FA 4 weeks ago
Rare Disease Day might seem like a strange thing to celebrate. For most of us, it wasn’t a happy day when we or our loved ones were diagnosed.
As I personally have processed and accepted my son’s diagnosis of Friedreich’s ataxia, I do celebrate him and want others to understand what he is experiencing.
While we may not celebrate the disea…[Read more]
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Katie Griffith replied to the topic Service Dogs in the forum Parents & Caregivers of Those with FA 4 weeks, 1 day ago
We had a wonderful experience and definitely will be glad to answer any questions!
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Shelby Risinger became a registered member 1 month ago
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Nikki became a registered member 1 month ago
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Shannon replied to the topic What do you wish people knew about rare disease? in the forum Living with FA 1 month, 1 week ago
Thank you for that clear description. Our son has just been diagnosed and I’ve been struggling to describe it. This helps
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Roger became a registered member 1 month, 1 week ago
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Shannon became a registered member 1 month, 1 week ago
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