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Delphine Andrews replied to the topic Let’s Talk About Dreams and Disability in the forum Adults With SMA 1 month, 2 weeks ago
I also float or am just sitting down somewhere. So validating to know others experience the same. Always thought it was just me.
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Delphine Andrews replied to the topic Summer Must Haves in the forum SMA Assistive Technology/Equipment 1 month, 2 weeks ago
no not too bad. I like that if I am sweaty, I can just get a new pillowcase rather than having to wash and change the cushion cover.
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Delphine Andrews replied to the topic Summer Must Haves in the forum SMA Assistive Technology/Equipment 1 month, 2 weeks ago
So I have recently tried a new hack because I am tired of all my skirts and pants getting ripped. I bought a set of black cotton pillowcases and lay one over my cushion before getting in the chair. Then my care providers use the pillowcase to move me where I need to go. So far it has been working well.
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Delphine Andrews replied to the topic No Change is a Good Thing in the forum SMA Treatments: Questions, Stories, etc. 8 months, 2 weeks ago
I have been on Risdiplam for about 6 months now. I didn’t really have any of the side effects with it but I feel like I might be getting slightly weaker. I have also been having hand spasms. I am going in for an assessment in January to hopefully see. I don’t feel like I had this kind of issue with Spinraza. The doctors also say it could take up…[Read more]
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Delphine Andrews replied to the topic SMA Typing (as in type 1, 2, 3 or 4) in the forum Diagnosis Information and General Questions 9 months, 4 weeks ago
I was told I was a 2.5, whatever the means. It is so arbitrary. It just goes to show that there are some things even the “experts” don’t know even if they try to classify it.
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Delphine Andrews replied to the topic Starting the Search for New Caregivers in the forum SMA Parents and Caregivers 9 months, 4 weeks ago
I had to go through this a few years back and it was tough for sure. Mentally, it took a toll on me. But it is one of those things that I had to realize was out of my control. I have to accept that I will always need personal care providers (at least until robot technology advances enough to fill this need – fingers crossed). Therefore, looking…[Read more]
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Delphine Andrews joined the group
SMA Patients 10 months ago
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Delphine Andrews replied to the topic Anyone Watch Ordinary Joe? in the forum Disability in Media 10 months ago
I have been watching it mostly for the representation, which I think is great. The show is ok otherwise. But the son is definitely my favorite part.
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Delphine Andrews became a registered member 10 months ago