mike-huddleston
Forum Replies Created
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That’s a bit of a tricky one to navigate Ryan. It used to annoy me a little, but I don’t want to go around being or staying annoyed about other’s ignorance or insensitivity. That said, I never had a problem speaking up. “Ahem, I’m right here.”
If you are regularly with a group of people, friends, family, or caregivers, let them know this bothers you when people do this to you. Tell them how you’d like them top handle it. Matters would be made much worse if someone you’re normally around complicates things by responding to the person on your behalf.  Let your regular companions know a simple, “Ryan is right here and certainly capable and willing to talk to you himself” or similar should solve the problem. You will never fix the social consciousness of people, especially strangers. Making the people you’re normally around aware of how you’d appreciate them handling this will help those who cross this unfortunately invisible line.
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That is wonderful Ryan! Congrats!
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I had an older friend of the family tell me that people have disabilities as well as general physical ailments because they don’t have enough faith in God’s healing powers. It was all I could do to not go anywhere from nuclear to post-apocalyptic with her. Took a couple of deep breaths and calmly explained to her the fallacy of her “logic”. Yes, sure, only non-believing heathens have physical maladies <insert huge eye roll>.
I also had an older woman in a department store yell at me to slow down. I mean, I’m nowhere near anyone and I’m going about 2.5 mph. I stopped, turned around and said, “Would you tell a person walking fast to slow down?” She just stared at me in disbelief – apparently surprised that I could in fact talk. Takes all kinds.
For my last Spinraza injection, I was zipping through the halls at Hopkins – it’s a huge campus. There was this very tall doctor walking at a real good pace, so I was keeping up with him. He looked at me, smiled, pointed at my chair and said, “Hey, I’m kinda jealous.” I pointed at his legs and said, “Yea, me too!” We both started laughing.
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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 expectations are guided by those rather than the first one. Just like hearing of other’s experiences that are close to mine. 🙂
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Hey Kevin –
Good, positive attitude! Good luck! Looking forward to hearing how it goes.
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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. Secondly, you forgot to mention, “Sponsored by Soda Drinkers Association of America!”
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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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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 similar experiences with others with SMA but I don’t let SMA define me or the people I want to interact with. My current situation and life experiences overlap others here, but we’re Venn Diagrams. Shaded part is relatable, the unshaded part is everything else. It’s not hard to find that shaded area with other folks not dealing with SMA. SMA isn’t the only overlap you will have. You and I have that in common, I’m assuming that’s a Dodger’s cap and I’m a lifelong Dodger fan. We all have that overlap with every single person we interact with. Find that overlap and build out from there.
Be well informed or well read. Something that makes you interesting and someone folks want to talk with. Nothing wrong with sports and video games, but be open to expanding beyond that so there are more opportunities. Eventually, people won’t pay attention to the chair or your situation. People who genuinely care may ask, and share what you’re comfortable with – even if that’s nothing at all. People will be comfortable around you IF you are comfortable around yourself.
As far as making fun of yourself, a quick and recent example. I was at lunch with a friend and his wife. The waiter came around with the drink menu. You could kind of tell the waiter was a little uncomfortable (careful not to stare at the chair and sometimes a little too cautious with his comments). Not a big deal to me. He asked if we were interested in the drink of the day. My friend and his wife each ordered one. He looked at me and said, “Sir?” My reply was simply, “No thanks, if I have one of those I won’t be able to walk out of here.” Everyone at the table and the waiter all lost it. He was completely relaxed around us the rest of the time we were there.
Point? Don’t make your wheelchair or your situation the focal point. Have fun, laugh, and be the guy other people want to be around. I’m not saying be the life of the party, but eliminate the wheelchair and SMA from the equation – even if that’s just a mental exercise at this point. What do you find interesting to talk about? What do you NOT want to hear from or about other people? What makes you roll your eyes when someone is talking (even if they don’t see you or it’s just a mental eye roll)? Same thing applies to other people. They obviously can see you’re dealing with a situation vastly different than theirs. See how the conversation goes. If they’re concerned, nosey, or interested, you’ll know. Respond accordingly and again, with what you’re comfortable with. You don’t initially owe anyone but your doctor and your caregiver full disclosure.
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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 that age are trying to show off their prowess (impress girls, etc) or whatever it was. You get pushed around, even when they’re joking, and it was pretty easy to be on my butt in the hallway. I do stay in touch with a couple of folks via e-mail and actual phone calls, as I dislike Facebook (their security policy was always BS in my opinion), but have never been remotely interested in going to a reunion. A lot of that may have been as I was declining physically while still ambulatory, I just felt even more socially awkward than I did in high school. Maybe, and that’s likely a good portion of it, but I’ve never worried about the “why” very much. But even though my graduating class was rather large at just over 550 students, I wasn’t on the inner circle of any of the normal groups.
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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 work from home the other 2. I’ve never insisted on an accommodation to work remotely full time, but I know that would be available if I wanted it. A lot of companies are open to remote workers.
Granted, I’ve been with this company for almost 32 years (yes, I am indeed that old – I started there when I was 7!!), but this provides a decent salary, excellent benefits, a more than fully funded pension, a 401k retirement plan as well, along with profit sharing.  They also have tuition reimbursement available, which I took advantage of, basically going to school part time while working full time.
I think it’s a matter of folks getting beyond physical appearances. I mean they aren’t “allowed” to ask certain questions, but that doesn’t stop them from making often significantly wrong assumptions. You make them overcome those negative stereotypes or preconceptions by showing them, whether it’s something like this type of work or anything else, the value you’d bring intellectually and with a strong work ethic.
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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 struggles we have, so we have an appreciation of the struggles others may have. So maybe or maybe not compassion, but certainly empathy. And that’s not limited to others with SMA. If I wear an SMA shirt or whatever, some people may ask, but too often a number of people don’t take the time to be informed or ask. That doesn’t bring any more awareness to the fact that I’m “dealing with something” that isn’t already pretty clear because I use a power chair. I don’t fault them for that, but a lot of folks are too wrapped up in their own world or bubble to be bothered. Getting beyond the thought “Dude is in a wheelchair” doesn’t happen for a vast majority of people. I’m not here to educate them, and won’t go out of my way to do so, but I will talk with anyone who shows an interest. I’m busy, just like they are.
That being said, I don’t want anyone’s pity. I’m 55. I’ve worked full time since I was 17. I’ve now worked for the same company for almost 32 years. And I still get, “Wow, good for you!” or “What an inspiration!” when I respond in the positive that, “yes, I still work.” I mean, seriously, I have a mortgage and bills just like so many others and am just trying to navigate my way through this life just like so many others.
In the meantime, I suppose I shouldn’t wait for any “Happy SMA Awareness Month” cards, right??? 😉
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Really clear explanation. Thanks for posting the video!
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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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Hope this went well, DeAnn.
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There were two women at work who had just attended a religious seminar on healing. Their post seminar assignment was to perform a healing on someone. Insert Mike as the perfect subject in need of a healing. Bear in mind that I was still ambulatory at the time, and using a cane. They approached me as I was heading to my car after work. I was in the garage and they came up to me, told me their intentions, and asked if they could pray for me. I said, “sure”, but having seen Ernest Angley do a healing or two where he smacked people on the forehead while proclaiming, “Be healed”, I was worried they were going to smack me and knock me down. I backed up against a concrete column. After they prayed and having not smacked my forehead, they said, “Now the rest is up you. If you believe, you will be healed.” A year or two later I was zipping around the halls at work in my wheelchair when I saw them both and said hello. I suppose that answered their unasked question about my belief in their healing powers. 😉
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Wow! I’ve never heard that one “visualize”. SMH. Pretty funny reply Kevin.
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Hahaha! Priceless video!
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That’s hilarious Michael! Thanks for sharing that.
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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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That just hurts my brain and my heart. Ugh times about 100.
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And a correction. My PT just e-mailed me and corrected the Hammersmith score from 21 to 19. Math error. 🙂
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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 sticking to the mat. As if it’s not hard enough to move or try. She adjusted the A/C, so that helped a little.
My first maintenance dose is at the end of October, so a while before I’ll need to do one of these again.
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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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Sorry to hear that Kevin. I know my aqua therapy is a high point of my week, so can relate to how disappointed you must have been.
That is absolutely the right thing to do when there is a threat of lightning, even for a lightning rod (grounded) equipped indoor pool. There have been cases where an ungrounded structure near an indoor pool has been hit and the lightning deflected into the indoor pool area.