Christina Cordaro
Forum Replies Created
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My family and I were initially confused, scared and frustrated that this was happening. We knew getting involved and meeting other families going through the same thing would help, so we did that right away.
When my brother was diagnosed a few years after me, we felt more prepared having all the right tools, resources and connections.
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Nice! I will be at the Philly location!
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That’s a tough one, because not everyone understands having to use multiple assistive devices depending on the situation.
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Thinking of you both! Keep us posted on how everything goes!
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Hi Victoria,
Thank you for sharing your story! You definitely have dealt with a lot, especially with FA playing a major factor in every life event.
Has your husband ever tried telling you how he feels and how things maybe affecting him? Do you think it would be good if you two seek professional help and talk through things?
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Same, I havent gotten here yet. But hopefully those who have been through this, can share their experience!
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My wish list always included a cure for Friedreich’s Ataxia. Now I just hope for good health, and that the disease does not progress any faster than it already has. I know it isn’t going anywhere, so I just wish FA could just take a “pause” every once in awhile!
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Another FA Patient and Advocate, Hasitha Illa published a book called “Wheeling Away.”
Hasitha and her co-author Saakshi Singla wrote this picture book to help provide knowledge to children to help them learn about and understand disability, accessibility, and inclusivity.
Click here to read more about this book: https://bit.ly/3hfdNoh
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It was amazing and inspiring to watch Selma perform on Dancing with the Stars!
I think it is betteryo try and fail! Life is too short not to,and tou may end up regretting not trying!
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I am so honored to also witness Dr. Gottlieb’s session. He was able to connect and relate his personal story and journey with everyone in the room. It was a moving experience for sure!
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I’m so glad to hear it’s going well!
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Whatever you decide to do, I hope it works out for the best for the both of you!
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Please share your experience(s) if you do see a speech therapist! I hope it is beneficial for you.
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Let me know if you have any recommendations!
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I believe in you, Karina!
#1-#3 are part of my resolutions too!
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It’s definitely okay to bring last year into this new one! I think it’ll help you grow and overcome any obstacles that come your way.
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Karina,
I am sorry that this symptom is affecting you and your daily activities of life.
It was getting in the way of my work as well. I asked my neurologist if there’s any remedy/medication to help alleviate this problem.
He prescribed me a small does of tolterodine. I take it at night so I don’t have the urgency to go at night when I am trying to sleep, and it lasts throughout morning and afternoon of my work day.
Maybe inquire about tolterodine to your doctor/neurologist!
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Yes! Everyone’s perception of being ADA compliant is different. I wish it was uniform everywhere.
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I hope your experience is the exceptional to the rule as well!
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That’s awesome that your daughter still goes horseback riding!
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How fun! I hope he got some of his favorite candy!
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I am so sorry, Christina! I know how it feelstp be left out or feel “unseen”.
I would definitely let them know how you feel and say what could be done better for the future.
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I wish they still had that app!
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I never considered motion sickness being a factor of double vision, but it makes sense! I wish we didn’t have to experience this on top of everything else.