rachel-markley
Forum Replies Created
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This post made me laugh but also made me sad to realize how many times we miss out on physical contact. No other tips though!
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I’m really struggling lately with everything in this blog. I’m over not being able to help and not having enough energy for fun. The fatigue has improved since Spinraza but it’s still hard working full-time and having 11 hour days.
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I do believe Zolgensma will become available for adults, however, I have many concerns about it’s efficacy in those of us with neurons that are deader than dead. It took me a year and a half to come around to the idea of Spinraza and another year to get it. I get dose 4 Wednesday.
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According to my mom, I was 2-2 1/2. I was easy to train after I was ready and it was my decision lol. I think she said seeing others at preschool not have to be changed helped a lot. Made me decide it was a good idea!
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Hi Ryan! In 2015, I traveled from Houston to CO Springs for my cousin’s wedding. The rest of my family lives in Ohio so everyone was traveling quite a distance. We all rented an amazing, mostly accessible house with a breathtaking view. It was totally worth the insane planning! I didn’t know it was the last time I’d see my grandma alive and I’m so thankful for the memories.
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I love this post! I think we really need to consider regenerative therapies and pay attention to Zolgensma’s effect on insurance coverage of long-term care. By regenerative therapy, I mean if you or I receive Zolgensma, our neurons and muscle fibers are already dead. How do we rebuild those to see more effects?
I also worry about Medicaid saying “well, they received gene therapy so they clearly don’t need home care. Look at those babies, they’re fine!”
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Thanks all! I’m currently doing a smoothie with both Greek yogurt and hemp powder (can’t stand more than 1 scoop). Meat is hard because of swallowing – even when blended – and I honestly don’t care that much for it. As for shakes/bars, I do have a nutrition degree and know the junk that goes into these will make me feel awful. More protein has been recommended by neuro and PT after Spinraza
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I have had Houston Hobby break my chair every time I’ve flown in or out. I only plan to fly in the future for something amazing (i.e., my 30th birthday U.K. extravaganza).
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I love my FAM!!! My facility (where I happen to work) didn’t want to do complex spines at all and still isn’t thrilled with it as there’s only 2 of us. She immediately addresses any concerns I have – i.e. new dr taking too much CSF – at my facility. She also was great about giving me directions for how to schedule, where to go, and specific people to talk to in each department.
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My parents were told 2 and I am 28! I DESPISE these life expectancies!
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I saw a PT I really trust yesterday and she told me there’s no need as long as I’m making sure my feet are positioned correctly on my footrests.
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I, too, wish I had known about this at a younger age! I am seeing a urologist for this now and hope to do an SPC with just local anesthesia.