mike-huddleston
Forum Replies Created
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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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I exercise every day in my wheelchair, with the exception of my aqua therapy day. Different things on different days, but including some of the following: light dumbbells in a variety of ways, exercise ball against wall and also on table and tall chair for stretching in different directions, kick ball bouncing against wall and squeezes between knees, therabands in a variety of ways, hand exercises with different devices (GripMaster, putty, and something called a Hand Power Pro), and a few other things. Another thing I do for stretching the shoulders is placing a transfer board on my lap and slide and roll my open hand from palm down to palm up as I move out and the opposite when I move in. Use a cane to stretch each arm by holding handle in one hand and the base in the other hand, and lift/push with other hand like I’m swinging a pendulum to different points of the clock. And I also have a shoulder pulley (one of those devices that hangs over a door and alternate arms as high as I can go in different angles.
I definitely understand how fortunate I am to be able to do this much activity and that not everyone can do this. If you have questions or want more details on any of this, let me know if I can help. To me, I’m a 40 or so year patient and have always done as much as possible, even as that has been with less weight over the years. I am interested to see if there will be differences using Spinraza. I haven’t noticed any differences outside of the pool, although I’ve just had my 4th loading dose on June 27th.
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Also of note, and not sure if I’ll be able to get this into a regular routine, about a month ago I did a demo of a Lite Gait portable harness machine through my water therapy PT. She’s trying to get one in her clinic, so asked me to participate in the demo. I did and was able to walk on land through this machine’s support. If they approve this for the clinic, my land appointments will become weekly instead of bi-monthly. 🙂
Interesting, as it turns out, this was on June 5th. That was exactly 3 years to the day (06-05-2015) that I took my last step on land. If they acquire one of these, I’ll provide updates.
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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.
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Yes, right side dominant. The size seemed more pronounced after diagnosis and I always assumed it was because I used the right side more. Not Rafa Nadal type difference between his huge left bicep and “normal” sized right bicep, but just a bit bigger. 🙂
Agreed re: an outside observer. Although I try to be realistic as much as possible, I don’t want to be fooled by any kind of wishful thinking.
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Chantell, apologies if I came across that you should throw caution to the wind and still go in the cold weather. I do, but I’m also too stubborn for my own good sometimes. Obviously you, your father and your physio are more in tuned to your situation. Definitely appreciate not subjecting ourselves to unnecessary risks.
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It was mostly comfortable, although a little snug through the upper thigh area. That could be adjusted for comfort.
Back in 2014, I was in a rehab facility for 6 weeks trying to relearn to walk after a hospitalization. That is where I first used a device such as this, but the ceiling installed variety called the Vector that I mentioned in the previous post. I know we were able to make adjustments on the straps with that. This one, I had less than an hour for the demo so tossed mild discomfort out the window to maximize time of use.
I just found out that Hopkins has a Vector available on site for PT. I go there for the Spinraza injections and related assessments, but the Vector is housed in a different area. If my PT is unable to arrange one of these in her clinic, I may check into options at Hopkins for using the Vector. Back in that 2014 episode, it was very interesting as I was really struggling to walk with the Vector holding about 90% of my weight. Based on the way I had to weight shift and kind of “throw” my legs in front of me to walk, I suggested my therapist in rehab to reduce the amount of weight it was holding. When she reduced it to about 60%, I was able to more closely simulate my, uh, normal gait. This Lite Gait has a similar adjustment.
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The pool I go to has two indoor pools; one regulation size for swimming laps, etc, and a therapy pool. Both have a transfer/lift chair. I do this with a therapist and would not be able to handle the transfer alone. At it’s lowest, my power chair is at least 6 inches above the highest point for the transfer chair. Transfers to the transfer chair are down hill and thus easy. When I get out of the pool, my therapist stacks 5 float boards (I don’t know what the name of these are, but they are maybe 15″ long by 8 or 10″ wide and about an inch thick) underneath me (I lift up in the chair and she places a few at a time under me). This makes the transfer back to my chair slightly uphill rather than significantly. As mentioned in another thread, last week I handled the transfer back to my chair without her assistance, but still would need her or someone there.
So, DeAnn, if you have an indoor or therapy pool available to you, you might want to check out the logistics to see how it might work for you. I only started in the fall of 2016 and wish I had done it years before. Good luck!
And Chantell, I go in the winter as well, but park close and zip quickly to my van. It’s not fun in the cold and being wet, so I completely understand.
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Fully loaded, or as my wife would say, “full of something”. Funny, but true.
No side effects that I would view as serious. Fortunately, no headaches so far. Minor and mild constipation for maybe 2 – 3 days after the injection. Certainly manageable.
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Thanks DeAnn. Good to know others have mentioned the tingling sensation.
So, today, another PT session. I do weekly pool sessions on Fridays and bi-monthly land sessions every other Tuesday. Same place, but different therapists. They work well together in moving me in a positive direction. My PT today was looking at my right thigh (which, since I was a kid, my right arm and leg are bigger muscle mass wise than my left) and said it looked more pronounced. He then described and named the 4 muscle groups in the quad. He said he’s noticed what appears to be more muscle density in 3 of the 4 muscles over the last month. The remaining one, along the outer leg (maybe kind of between the front of the quad and the hamstring?) has not changed.