Christina
Forum Replies Created
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Two weeks ago, I had a major fall again, and I ended up spraining and tearing ligaments in the same ankle. Unfortunately, this accident was much worse, and it was a longer recovery process.
I was and still am feeling so mentally and physically defeated from this happening so close together.
How do you manage the heavy feeling of defeat due to living with FA?
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Nate, I can confidently say it is manageable after being on the drug for almost 2 years! Please keep us posted with your journey!
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Hi Jeff!
I am sorry to hear that you have been having issues sleeping!
The only side effect is that I can feel groggy in the morning, which can make it physically hard to get out of bed. On those mornings, I have my husband help me!
-Christina
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Hi Cathy!
I am glad that you had a seamless process getting your parking placard! I am also happy to hear that you live in such an accessible area! I’m sure that puts your mind at ease when you and your husband are out and about!
Skyclarys has been helping me and most people I know. It will be 2 years, this July that I have been on it and I have only seen improvements. If you are worried about liver and hear issues, blood tests and your neurologist will determine the safety and intake of the drug!
-Christina
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Hi Cathy!
I have never driven, so the thought of hand controls intimidate me as well due to the loss of coordination and not being able to control it.
My husband drives me around too and we always park in a handicap parking spot for shorter distances. Was it a tough process to get your handicap parking placard?
-Christina
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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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Hi Cathy!
Thank you for sharing your story! I also had scoliosis growing up, so I know that you don’t think of FA as something to associate it with since you think it maybe a natural part of adolescence/growing.
It is pretty impressive and brave that you advocated for yourself like you did and got a confirmed diagnosis after living years of having symptoms.
I know it’s tough, but I am glad you are able to focus on what you can still do!
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Hi Jeff!
Your story sounds similar to mine. I was diagnosed at 21 years old, but started noticing symptoms when I was younger growing up. I am also in the process of finding which mobility aid works best for me (scooter vs. walker), so I understand!
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I am so happy to hear that you found a remedy/solution to help you sleep!
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Hi Dave! It’s so nice to connect with you! Let me know if you have any issues with navigating the forums!
I am sorry to hear that you are experiencing the symptoms of slurred speech. I know the apps that I mentioned are great tools and techniques that you can do on your own!
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I am going to try to fit more lean proteins and less processed foods into my diet!
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I am glad you found what helps you best!
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Thank you for the information! I’m sure it will be beneficial to most of us here.
What works for you?
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The being stuck in limbo in between is the worst feeling!
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I agree, thank you @Clester for your insights! All I ever knew for accessible vehicles are mini vans with the ramps. I didn’t know there were other options such as trucks!
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Good to know! I didn’t know they had the mixed ones.
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I 100% agree. It all starts with the parents embedding the teaching of inclusion and disability at a young age so empathy and understanding is offered to those who need it.
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Haha, love it!
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Thank you for the tip and information, Nate! I used to use CBD gummies in the past, but stopped because of the cost and they weren’t as effective for me.
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Hi Nate,
I am so sorry to hear you went through this injury! I use grab bars and a shower chair as modifications too, and it helps me! I am glad you found what works best for you.
-Christina
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Yes, it it definitely worth it in that regard!
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Thanks for sharing Megan! We’re excited to connect with you too!
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Hi Cathy!
I am so sorry that this happened to you and I am sorry to hear about how long the recovery process took. Injuries can be a scary thing, and it could take awhile to gain confidence back. But I am impressed that you did your own therapy! It seems like you have the knowledge and confidence to overcome this kind of thing!
-Christina
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I’m so glad to hear it’s going well!