This is HUGE.

As you say, it is unlikely to benefit many of us, but the changed lives of those newly diagnosed could be amazing. To think that until recently there was nothing that could help and now we have multiple choices. We will need to trust our providers and hope that there are well trained therapists available.

Some days I do Sherry. But fortunately I am surrounded by people who speak truth and worth into my life.

Thank you for how honestly you share your own challenges in this column.

Like you, I usually don’t bother to educate them. Muscle fatigue is even harder to explain. when just moving makes you want to cry because it is so difficult…

Not anymore.

Growing up I never threw anything away, certainly it could be repurposed, reused, donated to someone who needed it… Both of my parents were children of the depression, so they learned it from their parents and I from them.

After both my mom and my dad passed away, all the stuff dad had saved(surely it would be useful) needed to…

Read more

Yes, you still need the genetic testing to qualify. My guess is that when you were diagnosed the doctor did this testing.

The purpose is two fold. Firstly, to “prove” the diagnosis is correct, and secondly to check the number of copies of survival motor neurons SMN2 you have. The more SMN2 copies you have the less severely you are…

Read more

Boston is an old city. Narrow streets, lots of stairs, subway often not accessible. The bus system, however, is pretty reliable and all busses have ramps. If you are able to locate an apartment that you can afford, it is a livable city with beautiful parks and greenways.

As Alyssa stated, the medical facilities are the best around. I…

Read more

Alyssa, I live in Newton Massachusetts.

Having lived in the same area as you, I have never experienced a Tornado either. Going to our basement is not an option for me at all. My sons, who live in Texas, have no basement but are told to go to the center of the house, to a room without windows, even a closet if need be. Therefore, that is what I plan to do. Not the closet thing, my…

Read more

Although my friend who is a dentist shudders, my teeth!

I always have them with me.

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.

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.

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!

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.

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.

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…

Read more

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…

Read more

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.

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.

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…

Read more

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.

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.

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.

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… Read more

YES!

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.

Masks to me are a must! Any medical or personal care person needs to be cautious about spreading illness.

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.

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… Read more

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.

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… Read more

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.

I like the idea of a laser pointer.

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)

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.

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

 

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.

Kayaking, camping, being able to just be out in the woods alone and not being on a hard path.  Sigh

 

Auto trash cans are wonderful. Enough that I have just replaced my old one that broke when I knocked it over.

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!

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.
Thank you for checking!

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.

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,… Read more

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 excessive 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.

I am 63, so I don’t know if you are the oldest on the forum.

Glad to have you onboard!

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.

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.

 

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.

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

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… Read more