dennis-turner
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Although my friend who is a dentist shudders, my teeth!
I always have them with me.
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I have two of those scars. The second Neurologist (10 years later) decided that my first was wrong. Guess when the results came back the same a second time it should have confirmed it was correct, but 10 years later, they did a DNA test to “finally” figure out what I had.
Still SMA. But still no tattoos.
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Yup, but I wasn’t diagnosed until I brought my son in to be diagnosed. Back when I was a kid, dinosaurs were still around and boys never sat still.
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For me, Spinraza just works. Cost is outrageous but fortunately covered by my insurance.
As Alyssa has said, GI issues seem to be reported quite often with Eversdi and I already have concerns in that regard, so…
The good news is both are reported to be effective in slowing loss of strength. Let us know what your decision is!
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Yes they do!
I usually use a down jacket. The nylon material slides on my arms pretty well, and the entire jacket is extremely light. My bigger issue is taking it off once I get back in.
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Last year my wife bought me a towel warmer from sharper image. I almost never use it, but it has saved me from shivering when I come in from the cold a few times.
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Yes, I would definitely recommend it. It can be hard on both the driver and the wheelchair user (me), but we get to spend time together and see areas we haven’t seen before without killing our own van or having my chair damaged by airlines.
We did reserve the van a couple of months in advance, but I don’t think that was necessary.
My wife had a work conference in Texas and two of our sons live out here so, bonus.
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Funny you should post this.
My wife and I rented an accessible van to visit our sons who live in Texas. We own a van with about 117,000 miles, but decided to pay in case of any challenges along the way. Massachusetts is home.
Safe trip so far, have had a couple minor issues with the car. Door with ramp would not open one night for about 15 minutes, door with ramp wouldn’t close (couple times), but using a nation wide provider means they can replace it if something really bad does happen. We used Mobility Works, but i don’t know if they are anywhere near you.
Transportation challenges should be simple to fix considering how expensive everything else is, from medical equipment, to drugs, to caregivers. Although it does not seem that way.
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I believe, and my doctors agree, that I had it while I was in Beth Israel Winter 2019 into 2020. That time was horrible and worse, they did not know what it was or what to do about it.
Fortunately, my recovery only took about 3 weeks , most of that at home sitting up since if I lay down my oxygen level dropped dangerously.
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I had Covid a month ago. Both my wife and I had stopped wearing masks during the spring. I still have a cough but overall it was not terrible.
I wore a mask until after my 2 negative tests. Now I am avoiding large groups, but am no longer taking other precautions. Still I have a supply of kn-95 masks in case it grows worse.
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Lisanne,
Dennis here. I also have type 3. I was diagnosed later in my teens. It wasn’t easy being told by my gym teacher that I was just lazy or being bullied for not being strong enough to do things others thought nothing about.
But I am able to live a full life despite SMA. Married with 3 sons, two grandchildren, worked until about 10 years ago when my employer did layoffs and I decided to retire.
I began my Spinraza treatment in 2020 just as the pandemic kicked off. This treatment has helped stabilize me so I am no longer weakening.
Glad you have joined this forum.
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I would love to use a pool for water therapy, unfortunately it would be very difficult to get me changed and then into or out of a pool.
I love the freedom water can give me.
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I have been prescribed 10 MG diazepam. Lovely stuff.
I take it just before they wheel me into the injection room and I am just so chill for the next 45 minutes or do.
Praying Spinraza is helping keep you from deteriorating as quickly.
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I bought a 13 gallon motion detector trash can with a pet lock. It is worked well until I broke the cover trying to change the bag. Who knew dropping it from 3 feet and having it land in such away as to snap off the lid….
Yes I immediately ordered a new one.
Otherwise no suggestions.
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I get Spinraza which also has an expectation of excerise. As I am 64 and on Medicare, pt/ot only are approved for very short periods. Usually 6 – 8 visits per year.
As you say not enough. Asking the PT to train you in how to help do the exercises is likely to be your best option. If possible even having someone video the exercises to make sure you see everything and can get refresh. You would need to consistently do them every day.
Please let us know of the outcome and don’t give up hope.
Dennis
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YES!
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Lindsay, I hope you are correct about the dosage increase. That slump is no joke.
It seems ridiculous that a 2 year old and an overweight old guy get the same dosage. Getting back from the slump is also taking longer now. It was almost two weeks before I noticed the surge this time.
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Masks to me are a must! Any medical or personal care person needs to be cautious about spreading illness.
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The PT thought it could be put forth as physical therapy and just add other goals to get it approved . Likely only approved for an evaluation period.
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No I have not. Today however, at my scheduled Neurologist appointment,the attending PT told me she felt I needed to schedule one to release locked miscle groups in my back. So yeah… that might happen.
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Don’t know about not getting treatments if you have SMA. I usually tend to be cautious, I have my boosters, and wear a mask whenever I go out.
Please just continue to be careful.
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I am too easy going to worry much about anything. What would happen will happen.
I think it was harder for my mother than it ever has been for me, she blamed herself even though our family had never experienced anything like this.
For myself, I just kept going, until that became too hard and I needed help. Looking back I took too long making the jump from walking to scooter and missed it on some things I just couldn’t do.
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I was diagnosed at 15! By muscle biopsy.
I had just gotten to the point that I couldn’t quite keep up with others, and I fell very often. Back then (1976) I was told I had Kugelberg-Weilander Syndrome and NOT to exercise because it would kill my muscles.
How times have changed.
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I am struggling with massive fatigue the last two weeks, but I am ascribing it to the fact that my next Spinraza injection is due next week. It is bad enough that I am simply trying to get through each day and letting most things go for now. Catch-up after I am better able to focus will, be a bear.
My wife has a simple fitbit which I have tried, it usually tries to tell me I haven’t taken any steps (wheelchair) that my heartrate is low, and that I am not moving, which is all true.
My hope is that once I have had my next injection I will begin to be able to follow things again.