dennis-turner
Forum Replies Created
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I like the idea of a laser pointer.
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Blake, do i remember you live in Texas where it is very hot for much of the year? Come on to the northeast and you don’t need to roast for much of the year.
(I have a couple kids that live in Texas so I aways tease them when they complain)
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Yes! But I have found a short period of time where the sun comes into my front hall and I sit inside in full sunlight for the 20 minutes it hits that spot. I can almost feel my solar batteries recharging.
In a few days I know that patch will be gone, so yeah, that’s a thing.
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I have my flu and booster.
That said I wear my mask whenever I go out, even tho o ly myself and my wife are wearing them now.
I was told by a doctor friend at Boston Children’s hospital that they were really short of beds right now.
So I guess I am feeling cautious
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Take credit for all you did, including the impetuous to do this or any project. Then give a grateful thank you for whoever came alongside to help finish it.
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Kayaking, camping, being able to just be out in the woods alone and not being on a hard path. Sigh
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In my dreams I walk, but I walked for most of my life.
Interestingly enough, while I was struggling with Covid I knew when my oxygen levels were terrible (50% or lower) because I couldn’t walk without falling. I remember falling off curbs and not being able to get back on in my dreams. That woke me up!
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I also have the Permobile F3, my second.
The chair seems ok, but I am still not as comfortable going out in it. The first I was willing to go out, go shopping on my own, go for a nice roll through the woods near me, BUT this chair feels less stable somehow.
Perhaps I am weaker, maybe the lifting mechanism has changed, but whatever it might be, I don’t trust the chair not to tip when on uneven surfaces.Ultimately, I think it might just be that never ending frustration of not quite good enough.
Sorry for your continuing challenges, but glad you have been able to make some headway on getting the chair better for yourself. -
I am 63, so I don’t know if you are the oldest on the forum.
Glad to have you onboard!
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Much to my wife’s disgust, I sit in the sun and never worry about the burn. Not even when medication I take says avoid exposure to direct sunlight.
I never treat those very rare burns either, after the second day I just turn darker.
No problems at all.
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Yup, and it identified that I needed a cpap. I had to sleep in my wheelchair since I couldn’t use the bed they had for me. It was not a good night, but yeah I am glad i did it.
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Lap belt that came with my chair. I have enough trunk strength to be able to sit upright on my own, but have almost fallen out when I forgot the lap belt.
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Dodgeball- exactly!
When it went through my house in December my visiting son, daughter-in-law, grandkids, and my wife all had it but I didn’t get it.
Go figure.
Stay well Alyssa
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Started this week with the same energy I have had since last Monday. I still don’t understand it, but I will take it!
I have a official PT measurement set on Thursday, wonder if it will show the same improvements?
Also I got my repaired CPAP back Saturday which is definitely helping.
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Day 3 and 4 were also great! As my wife said, however, maybe use some moderation…
Yes I have much more energy and can do so much more, but my muscles still get sore from the unexpected activity.
Still don’t know why this treatment worked, no change in my dose or other habits, but WOW!
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Is this too early for an update?
After only 4 days, I felt the difference. I have been able to not only get outside, but do my yard work like a couple years ago. AND, I didn’t feel so exhausted that I needed a nap either yesterday or so far today.
I don’t quite understand why, it has never worked so quickly or at this level before. Praying it isn’t just a blip, but 2 days in a row is awesome.
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She acknowledged what I had said and was not dismissive. Some of the studies she is following are suggesting that the Spinraza dosing level should be determined by body mass, i.e. larger needs more medication to reach same results.
Alyssa, I shared that another person on a SMA forum had related the lack of effectiveness this past dosing round and she was surprised. Our final decision is we will observe results this time and consider what to do if again I see little change in stamina.
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I had an appointment with my new Neuro yesterday and shared how I hadn’t seemed to get the boost from my last Spinraza injection. My next is Thursday. I am hoping it makes a difference this time. Usually my stamina improves after a couple weeks.
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Or we might just create a new cushion we could all agree does not seem to work for us ;<)
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Auto trash cans are wonderful. Enough that I have just replaced my old one that broke when I knocked it over.
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I am still doing ok. Yes, the kick I got at first has disappeared, however, I am still feeling so much stronger than I had been after the previous injection.
I am thrilled you are having better oxygen levels. Anyone else think that last round was a fake treatment?
Thank you for checking!
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My previous chair was an F3. The only difference was that with my last chair I had anterior tilt (chair tips forward). As I needed to pay out of pocket for that feature $7500, I decided to forego it. I now realize that I used it every single day and miss it terribly.
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And you as well. How and when were you diagnosed?
I was diagnosed when I was 16 by a muscle biopsy. At that time I was told it was Kugelberg-Weilander disease and that if I exercised it would get worse.
Needless to say, thank God we have progressed in our understanding and that treatments are now available to at least slow the effects.
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My pulmonologist has, at this time, not determined that I need a bipap. She expected I would before doing many lung tests. For whatever reason I am ok as long as I have a cpcp. Doing without even that for the past two months was very difficult, but between my cpap breaking and the nationwide shortage right now, there were no loaners available.
I slept sitting up most of the time.