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Kelly Miller and
Mike Huddleston are now friends 2 years, 4 months ago
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Mike Huddleston replied to the topic Injection #6 in the forum Spinraza 2 years, 4 months ago
Glad to hear it went well, Kevin. I have my first maintenance dose (#5 overall) at the end of October. I was only a little apprehensive prior to my initial dose. That one was a little rough as although they had fluoroscopy available, they opted not to use it initially. The other 3 went much better as they utilized the fluoroscopy, so my exp…[Read more]
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Mike Huddleston replied to the topic Injection #6 in the forum Spinraza 2 years, 4 months ago
Hey Kevin –
Good, positive attitude! Good luck! Looking forward to hearing how it goes.
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Mike Huddleston replied to the topic Getting Enough Vitamin D in the forum Spinraza 2 years, 4 months ago
Michael, you live in Texas, so perhaps you get enough naturally in the sun? 🙂
Mine was low for the first time in regular blood work for my annual non SMA physical maybe 4 or 5 years ago. I take an OTC 2000 IU supplement daily and it’s been fine ever since.
Kevin, re: “new study says milk will kill you”, first of all, very funny. Se…[Read more]
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Mike Huddleston posted a new activity comment 2 years, 4 months ago
Hello and welcome Lisa!
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Mike Huddleston replied to the topic Moments out of your control in the forum Adults With SMA 2 years, 4 months ago
Hahaha! Priceless video!
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Mike Huddleston replied to the topic Spinraza Delivery Methods in the forum Spinraza 2 years, 4 months ago
Interesting article DeAnn; thanks for posting.
Hey Lisa, sorry it didn’t work out for you yesterday. I’m 55 and have finished the 4 loading doses and first maintenance is late October. Let me know if you’d like to talk? Be glad to help assuage or talk through any concerns you may have.
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Mike Huddleston replied to the topic Finding Common Ground in the forum Adults With SMA 2 years, 4 months ago
That’s hilarious Michael! Thanks for sharing that.
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Mike Huddleston replied to the topic Finding Common Ground in the forum Adults With SMA 2 years, 4 months ago
I’d have to agree with Michael, oh about 125% on this one. First of all, have a sense of humor about yourself. That will let people relax and be more of themselves around you. No one wants to feel like they’re walking (or rolling) on eggshells. They don’t have to be relatable to your situation to find common ground. I mean, we share sim…[Read more]
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Mike Huddleston replied to the topic Class Reunions, Yay or Nay? in the forum Adults With SMA 2 years, 5 months ago
Wow, very similar high school experience. I mean, I was not exactly a jock, being diagnosed when I was 16 but knowing “something” was wrong a year or two before, but even not being a jock, it was obvious I was having issues. The school I attended had three floors, so stairs became a bit of an issue in my junior and senior years. And kids th…[Read more]
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Mike Huddleston replied to the topic Best Jobs For a Person With SMA? in the forum Adults With SMA 2 years, 5 months ago
Hey Ryan –
I’m a Systems Analyst. Well, actually a lead with 10 people reporting to me. But this type of work allows us to use our brains while not requiring much, if anything, in the way of physical strength. Related fields could be a business analyst, a developer, or database related work. I typically go into the office 3 days a week and…[Read more]
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Mike Huddleston replied to the topic August Is SMA Awareness Month in the forum Adults With SMA 2 years, 5 months ago
Thanks for posting that link, Kevin. I haven’t dug through all the archives but there is a treasure trove here. What a well written article. I would say, “you’re an inspiration”, but not sure how you’d take it? Buwhahahahaha. Sorry, yes, I had to go there.
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Mike Huddleston replied to the topic August Is SMA Awareness Month in the forum Adults With SMA 2 years, 5 months ago
That just hurts my brain and my heart. Ugh times about 100.
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Mike Huddleston replied to the topic August Is SMA Awareness Month in the forum Adults With SMA 2 years, 5 months ago
Well, forgive me in advance as I’m typically a little cynical about these type of things. But I’m also a 40+ year patient, which is a bit longer than many here have been alive. IMO, our compassion for others is what this kind of thing is about, but those of us with a disability seem to already have a certain amount of that as we know what s…[Read more]
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Mike Huddleston replied to the topic Spinraza Dose 6 Tomorrow in the forum Spinraza 2 years, 6 months ago
And a correction. My PT just e-mailed me and corrected the Hammersmith score from 21 to 19. Math error. 🙂
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Mike Huddleston replied to the topic Spinraza Dose 6 Tomorrow in the forum Spinraza 2 years, 6 months ago
Hey DeAnn –
Got back from the reassessment a little while ago. It went well. And, yes, it was the same person. My 9 hole pin timed test (they have a name for it but I don’t remember it) improved by about 4 seconds on each arm. And the Hammersmith evaluation score went from 15 to 21. It was really humid today and I had shorts on and kept stic…[Read more]
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Mike Huddleston replied to the topic Educational Video (SMN1 and SMN2 genes) in the forum Raising Awareness of SMA 2 years, 6 months ago
Really clear explanation. Thanks for posting the video!
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Mike Huddleston replied to the topic Spinraza Dose 6 Tomorrow in the forum Spinraza 2 years, 6 months ago
3 points in one assessment is huge, as is 8 overall! This is excellent news to hear and I’m happy for you! Congrats!
I’ve felt the effects of the needle hitting a nerve channel (or whatever), but it usually just radiates a little – never down to my toes. I have my first re-assessment on 7/24. For some reason, I’m a little nervous about it.
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Tammi Bradley and
Mike Huddleston are now friends 2 years, 6 months ago
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Mike Huddleston replied to the topic Video #154 – My Second Maintenance Dose Injection PROVERBIAL BRICK WALL in the forum Adults With SMA 2 years, 6 months ago
Nice video Michael! I posted a reply under my youtube username (not sure where that came from, but apparently it’s several years old!!), ekim21144. 🙂
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