I hope it’s okay to post this, but if not, moderators please moderate.

I received this from the producer of the MotorWeek program on PBS. This segment features yours truly.

The “FYI” TV segment about adaptive vehicles is airing nationwide on MotorWeek (Episode #33) from 4/17-4/23. Use this link to search when and where it’s on TV in cities…

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Hey Alyssa –

To me, I think it depends on the situation and who you’re explaining it to. If it’s a medical person, more detail. If it’s someone curious, then less. In your situation, I would handle those interviews like I used to handle job interviews at work before I retired. Most of my evaluation of their technical skills were from their…

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Yes!!

Obviously, insurance issues may be presented, but I will try my best to try this treatment that supplements Evrysdi and Spinraza. As mentioned in the aging tips and tricks response, the areas with the most concentration of viable motor neurons are the areas least affected by SMA. In those areas, apitegromab will remove the limitations…

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Great topic. 63 years old, type 3, ambulatory until just under 11 years ago.

Susana’s ‘keep moving’ point is huge. This applies to everyone, not just those of us within the SMA community.

At one time I did acupuncture with a TCM trained acupuncturist. Not someone who read “Acupuncture for Dummies”, etc. Her and her husband relocated to the…

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Not silly questions at all. So, I was ambulatory until I was 52. Between no longer load bearing in my legs and hips in combination with my age, my neuro thought it was a good idea to have this done. After taking the Fosamax pills for 3 years or so and then transitioning to the Reclast infusion, my DEXA scan showed an increase in my T…

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100% agree. Sometimes educating folks is a necessary thing.

Kind of a follow-up as well from my response a month ago. This was never an issue for me until I became non-ambulatory in 2015. In my annual MDA clinic check up, my neuro suggested an evaluation of this very thing and referred me to an endocrinologist. The endo is the doctor who prescribed the DEXA/bone density scan. They focused on the…

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I think the difficult part about this, even for someone like Vrabel, is the invisible disability part. To me, if they have a permit, I don’t waste too much time on it. There are a couple of reasons for this:
1. In the state of Maryland, even a physical therapist can complete and sign off on the form for these, so a lot of people don’t have to…

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I’ve had several DEXA scans. Maybe 6 or 7 years ago, my neuro referred me to an endocrinologist to assess bone density. The initial DEXA scan showed concerns with my T scores in the hip areas. I was prescribed Fosamax and took that for a few years, with annual DEXA scans. After 3 or 4 years, that seemed to stabilize and in 2024, I switched…

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Not a fan of winter due to the need to bundle up. I prefer wearing shorts year-round, which is not ideal in Maryland, but more comfortable for me. I’ll wear long pants if the event or occasion warrants it, but otherwise, shorts win the day. That said, I have a couple of smaller, pet sized blankets that I use to lay across my legs and then…

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Appreciated. There’s just so much to weed through these days, which can be good and bad. Knowing what others see or reference is helpful.

@Chrisr TLDR version: Please post up a link to the article you mention.

To be clear, in yet another helpful webinar yesterday sponsored by MDA on gene therapy, no existing treatments reverse damage done prior to treatment. If you’re using Evrysdi or Spinraza, neither of those completely stop damage to all motor neurons but rather (and hopefully) slow the effect. There are many groups announcing work (they’re trying…

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This is amazing news! And it’s the latest example of why, for years, I have said I am so thankful for the hundreds, if not literally thousands, of people who work every single day to make our lives better. I know there’s someone on here who I’ve known for about 5 years (predating my time here) who is very negative about his SMA diagnosis and…

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This! This times 100. So well said, Susana.

About the fatigue. I have found mestinon (pyridostigmine) helps with endurance for me. I’ve known a few other SMA patients, both type 3s and still ambulatory who didn’t care for it. One said it didn’t seem to help much and the other said it increased fasciculations. The standard Rx calls for one 60…

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Such a good question, Alyssa. For me, it’s larger than living with SMA; it’s living with a disability in general. What I mean is that I think there is a tendency to lump anyone with a disability into one group of “they”. Non-disabled people often don’t know, think about, or would ever consider the differences between wheelchair users living…

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CeeKay –

I just want to say thank you for sharing your grandson’s journey thus far with us. Expressing your concerns and emotional vulnerabilities is important, valid, and helps all of us. I’m so very thankful to hear of your grandson’s progress and hope these positive trends continue. It brings tears to my eyes and joy to my heart.

As…

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So, I think it’s fair to feel frustration and/or envious. That said, I think it’s helpful to level set expectations. For most of us on treatment, there are two options available: Evrysdi and Spinraza. There is currently NO biomarker that indicates which of these, if either, will be MORE effective. So, there may be a trial and error aspect of it.…

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Never wanting to minimize the seriousness or difficulties of SMA< but for me, a sense of humor is necessary and as Alyssa said, we have to be able to laugh. Finding humor is a way of finding grace, for me, as well as others. It also can help break the ice with someone having difficulty interacting with someone in our situation.

My favorite…

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Thanks for your reply, Sherry. As I’ve mentioned in several responses, my intention was never to discourage people from expressing or sharing their very valid concerns and issues. This can – and should – be a safe place. I’ve also admitted that as someone who has dealt with SMA for nearly 50 years and who has lost two older SMA…

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@susana-m

Thanks Susana – I’m in no way trying to silence anyone or limit their “pressure release valve” options, as those are valuable and important. I’m not referencing patients here as so many people have expressed considerably thoughtful comments and replies and I’ve appreciated and learned from many of them. Sorry if that sounded like…

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Hey Barry –

Sorry to hear your experience with rear end pain. That doesn’t sound very pleasant at all. Does this happen with all chairs regardless of softness? In other words, does a hard wood chair and a padded office style chair result in the same discomfort? If consistent regardless of level of padding, perhaps talking with either…

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Mostly good suggestions but should be noted that the pill form should not ever be crushed. Per their website, “Evrysdi tablets can either be swallowed whole with water or as a mixture in 1 teaspoon (5 mL) of room temperature bottled water. They cannot be chewed, crushed, cut, or dissolved on the tongue.” (bolding by me). Their “mixture in…

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I finally had a chance to re-read my previous comments. Regarding “move on”, is it possible that you’re interpreting that from this comment: “If real, take appropriate steps to mitigate it. If manufactured, take steps to correct and move past it.” That specifically referenced manufactured (not actual fear), and I suggested taking steps to…

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Hey Micaela – no need for an apology for the lengthy reply as this is a valuable and appreciated perspective.

So, a lot to digest. I thought I previously mentioned I may have misinterpreted the initial post incorrectly and I admittedly did not read the referenced post by Jasmine. I was never focusing on the cause of the fear, but just how…

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And sorry, I interpreted the first comment/post as almost or possibly being paralyzed by fear of something negative. Perhaps my interpretation wasn’t correct. When I was able to walk, if I fell, I got back up. Sure, I was worried about falling and as walking became more difficult for me, I had to accept that some situations would be too…

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Thanks Micaela! Valuable and appreciated perspective. I will only say that if that works for you, I’m thankful you’ve found an effective solution for processing negative emotions and thoughts. That said, that approach may not work for everyone. If my solution doesn’t work for you, it doesn’t make it any less valid for me and perhaps others.…

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Hey Kevin –

I have a genuine appreciation for the need to deal with reality of the hardships of those living with SMA and other NMDs. What’s not healthy IMO is letting the fear of the possible negative outcomes become all-consuming and eliminating the possibility of experiencing joy in our lives. The way the issue was presented is allowing it…

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There is a psychological term for this negative thought process: rumination. Yes, those of us living with SMA need to take precautions that others don’t. That said, I refuse to let SMA define me or control me. There is too much joy available in life to let fear control you, whether that fear is actual or manufactured. If real, take…

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Hello and welcome, Melzee!

62 year old type 3 living in Maryland. Married, no kids, and both of us are retired. 5 nephews and 3 nieces, oldest is 43 and youngest is almost 21. But we also have 6 great nieces and 2 great nephews as well! They are all a joy!

Hey Aimee –

Sorry to hear about Callie’s difficulties with a stander. So, a few thoughts on this, for whatever they might be worth. I’m a type 3, 62 years old, diagnosed at 16, who started using a powerchair full time 10 years ago. My condition had progressed to where walking was extremely laborious, fatiguing, and honestly, too risky for me. …

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Hey Barry – I googled: “CBD gummies in Georgia” and most importantly, this was the first thing that came up: “Under the current Georgia CBD laws, the possession and use of CBD oil derived from the hemp plant, featuring no more than 0.3% THC, is legal for all adult residents. This includes several CBD products, such as oils, gummies, soft gels,…

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Interesting question, Sherry. Thanks for posing it.

So, I’m a little on the, ahem, older side at 62 and was formally diagnosed with Type 3 at 16, meaning I’ve been living with SMA for over 45 years. Throughout my journey, I’ve experienced a lot of emotions and one of them is the feeling that I don’t or might not belong somewhere, and that can…

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Completely understand the apparent disconnect or lack of reasoning by insurance companies. I’m a type 3 and started using a power wheelchair for the first time in 2015. It took 9 months to get approved, with initial denials stating, “not medically necessary”. Seriously. I did get an elevator seat on that first chair, but no standing option.…

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So, I use a power wheelchair but have not pursued any form of robotics up to this point. But, as far as insurance, they are in the usual business of denying first, especially for unique or expensive DME, thus forcing you to justify it via an appeal. And it’s not so much that they approved the $30k wheelchair and then denied the $12K OBI, but…

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Out of my element on this, but that is absolutely fantastic!

Thank you for your kind words, Alyssa.

I definitely understand that I’m pretty fortunate thus far and try to never lose sight of that. I just meant to encourage everyone to do what they can; anything is better than nothing and again, if possible, can have a positive effect. Insurance concerns me as well, as they are built to decline, which…

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How did I miss this topic????

Yes, I exercise every day, usually for about 2 hours. In addition, I do PT twice a week, once in clinic and the other in the pool with a therapist I’ve worked with since October 2016. My Home Exercise Program (HEP) is pretty comprehensive as my PT and I have reviewed it and tweak it if and as needed. It…

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Very similar experience that I can completely relate to. 62 years old, Type 3 with 4 copies as well. I was ambulatory until 2015 and now use a power wheelchair. Much stronger on my dominant right side. I do PT twice a week (1 land and 1 pool) and have a rigorous HEP in an effort to maintain as much as possible until myostatin inhibitor and…

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Sad but true, Alyssa. And I have little doubt that most, if not all, of us here have experienced this to some degree.

I just realized who this is. Should have paid more attention or realized. 🤨

Although this may be one of the benefits of myostatin inhibitors, the biggest benefit whether for repair or strength gains is somewhat, if not largely, dependent on the viable/salvageable motor neurons. The weakness in any area may be related to overuse and/or…

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Interesting question. It may be overuse as both you and Jeff suggest, or it could be that you’ve had a higher rate of loss with the motor neurons on the now weaker side. Or a combination. It’s odd that we all have some similarities and some differences in how SMA progresses. Our Venn diagrams are quite different between different sets…

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And, absolutely YES, we are so very fortunate to have options. I was diagnosed officially at 16 and am 62 and lived with SMA for about 40 years without the benefit of treatment. It touches my heart knowing that SMA Type 1 is no longer the leading cause of death for children under the age of 2. And that is directly related to the 3…

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Hey Alyssa –

Always glad to share my experiences with others. I did want to correct a couple of things I mentioned though as I was going from memory (uh oh) and did a little more reading to make sure what I said was accurate:

1. The protocol for taking either the liquid or tablet form of Evrysdi states that it is no longer required to be…

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Hey Alyssa –

No worries and I’m always glad to help if/when I can. One of the nice things about being here is that we can share and learn from each other and from our experiences.

The GI issues were quickly resolved for me by just adjusting the meal I took it with. I initially tried it with lunch which is usually a very light meal for me.…

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Hey Alyssa –

Always good to get info and keep your options open. I was in the first group of 5 adults in Maryland that started Spinraza back in mid-2018. I made the switch to Evrysdi last September, so about 6 years on Spinraza and a total of 22 injections, the first 13 of which were lumber and the last 9 were c-spine.

I have tolerated the…

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On February 19, 2025, MDA held a webinar: “<strong style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>MDA’s Impact on Neuromuscular Research“. This very question on research funding was raised and the answer was very little funding came from the federal government. This was for all of NMD research, not…

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I switched to Evrysdi in September after 6 years on Spinraza. I spoke with my Genentech rep yesterday who said she’s receiving a lot of requests about this. a few things of note:

1. It HAS to be taken orally, even if diluted in non chlorinated water. If you use a feeding tube, you can’t take it in the pill form.

2. It may require a new…

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I am so very sorry to hear this news about DeAnn. I never had the privilege of meeting her either in person or virtually but appreciated her perspective in her articles. My heartfelt condolences to her family, loved ones, and friends. DeAnn had a powerful voice and message, and she will be missed.

First. congrats on the 10th anniversary for your non-profit. That is wonderful!

As far as the valproic acid study, personally I didn’t notice any difference or benefit. That said, I was still ambulatory at the time and could do most things they asked for, but it was basically the Hammersmith, a neurological exam, a DEXA scan annually, and…

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