Christina Cordaro
Forum Replies Created
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I would love something like this for my husband, Justin! I think it will be beneficial for him to talk to other spouses/caregivers of someone with FA. I’m sure what they are going through isn’t easy either.
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@holmej4 the MOXIe news is amazing! I was at the symposium in Philadelphia with 60+ other FA patients when the press release was announced by the FARA President, Ron Bartek. It was such a powerful moment.
I know when you are a part of a clinical trial, you are not supposed to share your symptoms and reactions of the drug because you don’t want to persuade others who are also participating. So I don’t think we can know any opinions until the FDA approves the drug and it goes to market.
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@frankie-perazzola I don’t wear compression socks. But do you think they will help with purple feet associated with FA? This happens to me, especially in the winter.
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@frankie-perazzola I’m so glad we officially got to meet in person today!
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@fiona-lamond I’m sorry you also have to deal with this issue. But I can appreciate you taking control of what’s right! You shouldn’t even have to be put in that situation.
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I agree, Southwest is the best! I recently traveled for work and my honeymoon and they were so accomodsting from pushing me around the airport to the designated plane to on the airplane to the ADA seat section I never had a bad experience and will continue to use them.
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@toolman it seriously is the little things that mean the most and people seriously take things for granted!
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@frankie-perazzola for work, I do all of the above- wake up earlier, lay out your clothes and shower the night before to give myself extra sleep time and time to make sure I am not rushing getting ready and eating breakfast. I feel as though this helps me!
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@frankie-perazzola my husband also suffers a rare disease, called Fabry Disease. He thankfully has treatment and takes an oral medicine every other day. But between Fabry and Friedreich’s Ataxia, be both have become stronger for one another and understand each other better because we go through some of the same symptoms.
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@toolman I am so sorry to hear what challenges you and your wife are faced with. I can’t believe that you got charge more for handicap parking! Were you able to report that to the concert venue or was the parking a third party service?
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@emandreck a food tray is a great idea! I will definitely keep that in mind!
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I agree with Sean’s comment that laughter reminds us of life’s simple things, and challenges us to find the silver lining amid tough situations. Life is too short and it’s important to to find the positives in everyday and a smile and laugh can go a long way!
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I didn’t start noticing FA symptoms until I was a junior in highschool. It was confusing and frustarting because I would stumble and fall a lot and I would become tired easily. I thought I was a clumsy teenager but it turns out it was the start of my FA journey.
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@karina congratulations on your promotion! It sounds well-deserved 🙂
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The consistent people in my life are my family, three good girlfriends from high school and two FAmily members that I have gotten close to since being diagnosed. We talk everyday if not, a few times a week.
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@jesusr I agree! Having a daily scheduled routine keeps my health in line.
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@debijean what type of work do you do if your mostly on your feet? I work in the hotel industry and its sometimes just as emotionally tiring!
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@debijean ugh I have been experiencing the uncontrollable bladder recently! It is the absolute worst!
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This happens to me whenever I do too much during the day and overwork my body. However, when I take CBD gummies, it helps me sleep throughout the night!
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I’ve always been a side or stomach sleeper. If I sleep on my back it hurts and I am sore and achy the following day. If I can’t get comfortable though, I tend to do stretches or breathing exercises that helps.
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I love family vacations down the shore to Stone Harbor, NJ. My family and I call it our happy place. It includes clean and beautiful beaches, nice town of boutique shops and great food scene! This year was my first time using a beach wheelchair and I loved it!
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I think these news are very important because you see most people diagnosed with FA in their childhood or young adult years. It is crucial that family members of someone who gets diagnosed after age 50 also get tested for the FA gene, because you never know when it can occur.
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@jesusr I am religious too and I truly think God wouldn’t give us this battle (FA) if we weren’t strong enough to fight it. I truly believe there will be a cure someday.
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This has been happening to me lately. I have been appreciating the help because I am finding it difficult to walk steady and balanced with my rollator. But I completely understand the need for you independence and wanting to do things on your own. I would suggest saying “I truly appreciate your kindness and offer to help me, but I would like to do this on my own”.