Christina Cordaro
Forum Replies Created
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Christina Cordaro
MemberOctober 18, 2022 at 5:47 am in reply to: How is your daily life affected due to FA?I get nausea too when I am so fatigued to function. I wish there was a solution to this also!
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I always feel like myself and comfortable in jn my own skin. It’s a great feeling to be in the same room as you who sympathize and understand what you and your caregivers are going through!
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I give your son all the credit for driving when having FA!
I was always afraid to drive, then when I was diagnosed at age 21, I really was hesitant to learn. I know hand controls would have to be a must.
Have you all looked into hand controls yet?
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Christina Cordaro
MemberSeptember 22, 2022 at 3:13 pm in reply to: Are You Ready for Some Football?I’m a big football fan with my husband. We love the NFL and Buffalo Bills!
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I am so sorry to hear that they couldn’t find the reasoning about your husband. I’m sure it has to be very frustrating. I hope you and your family can find peace throughout all of this.
FA definitely has its challenges and share of unknowns. I try to live in the present, live day by day, and accept that it is what it is because I never know what each day will bring.
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I will miss your columns, but I am so glad that you will still be a moderator!
Thinking of you and your family during this difficult time everyday ❤
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Christina Cordaro
MemberAugust 10, 2022 at 6:11 am in reply to: Reata’s ‘regulatory concerns’ turn into three-month delay – 8/9/2022Yes, the timeline is a setback, but it’s better than nothing!
Since there needs to be more data supporting the approval, the review period has to be extended so the FDA has time to look at it so there is no reason to reject the approval.
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Christina Cordaro
MemberAugust 9, 2022 at 10:25 am in reply to: Do you have any advice for experiencing slurred speech?Thank you for sharing your story @becky1977! I’ve also been saying less/finding alternatives to get my message across and it has been helping.
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Luckily I go to the Children’s Hospital of Philadelphia (CHOP) and their sister Hospital University of Pennsylvania (UPENN) is within the same network. They were able to reccomend an adult cardiologist that is even familiar with FA. Can Noah be referred by his current cardiologist?
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Change is always a hard thing to deal with, especially when you have a specific routine and way of doing things. I think it’s important to be open and accepting of the change, and be OK with asking for help when needed.
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What types of massages does he get? Do they help him?
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Christina Cordaro
MemberOctober 2, 2022 at 7:57 am in reply to: What approach do you take when thinking about the possible outcomes of the future?I couldn’t agree more!
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Christina Cordaro
MemberSeptember 27, 2022 at 7:32 am in reply to: What approach do you take when thinking about the possible outcomes of the future?Learning what we can and cannot do is key! We can only do/take so much. I’ve learned over the years that it is ojah to ask for help sometimes!
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Christina Cordaro
MemberSeptember 22, 2022 at 3:11 pm in reply to: How many of you use more than one assistive device?Hi Jet! It’s not strange at all to respond to an older post. We actually encourage it 😊
Thank you for sharing your experiences on what works best for you!
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Christina Cordaro
MemberSeptember 22, 2022 at 3:09 pm in reply to: How does health insurance help you with medical equipment?I’m glad having an aid made both processes easy and stress-free for you!
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Christina Cordaro
MemberSeptember 20, 2022 at 7:37 am in reply to: How many of you use more than one assistive device?I am glad to hear that Noah has found to be the best fit depending on the situation!
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I hope tbe office of accessibility takes action quickly and Noah gets what he needs!
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Always something! Continuing to keep my fingers crossed!
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Christina Cordaro
MemberSeptember 13, 2022 at 4:07 pm in reply to: How well prepared can you be for the unexpected?I can relate to this 100%!
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Christina Cordaro
MemberAugust 31, 2022 at 6:52 am in reply to: Have you ever had to explain disabilities to children?I love hearing stories like that!
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Christina Cordaro
MemberAugust 10, 2022 at 6:13 am in reply to: Supporting Friedreich’s Ataxia Research, One of Sip at a TimeLet us know what the outcome is if you use this product, or something similar!
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Christina Cordaro
MemberAugust 8, 2022 at 5:41 pm in reply to: Do you have any advice for experiencing slurred speech?I agree about the breath control! Sometimes I feel it takes so much energy and strength to get my words out.
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These are awesome! I love the women’s slip-on style and how they look like “normal shoes”. I am definitely going to look into buying! Thanks!
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Keeping my fingers crossed!