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  • Are there therapists that specialize in SMA and grief?

    Posted by alyssa-silva on May 13, 2024 at 9:49 am

    Ok, hear me out. Living with SMA, we have so many providers who specialize in our disease: neurologists, pulmonologists, PTs, OTs… the list goes on. But are there any providers out there who specialize in mental health and SMA?

    I was thinking about this recently because May is Mental Health Awareness Month. One topic that popped into my head was grief. No one is immune to experiencing grief, but in the SMA community, grief can become more prevalent. Whether we are grieving abilities lost, the lives we thought we’d have, or the passing of someone in the community… grief can take on many different forms and linger far longer than wanted. 

    In 2022, I had a major health setback, and my life changed forever. I was thrust into the grieving process and had a hard time finding solace. Then, in 2023, I lost five family members, which pushed me into feeling a different kind of grief. As a result, I never fully processed my 2022 grief. 

    I’ve been working hard on my mental health this year and am in a much better headspace than I have been in a while. Though I am still a work in progress, so this has me wondering:

    We have specialists for everything SMA-related. But what about grief? Are there therapists out there who specialize in SMA grief? 

    I bet many would benefit from this service. I know I would have two years ago. 

    After all, shouldn’t our mental health be just as important as our physical health?

    mike-huddleston replied 1 month, 1 week ago 2 Members · 1 Reply
  • 1 Reply
  • mike-huddleston

    May 14, 2024 at 6:18 pm

    My PT is very familiar with SMA and has treated over 10 patients, including me. Certainly different approach than a therapist who specializes in rehab/recovery. I am not aware of any therapists who specialize in SMA mental health, but think that, or at the very least, chronic or progressive condition specialties would be helpful.

    Kind of related, I was recently talking with someone about my experiences as a young teen dealing with an SMA diagnosis. Kids can often be mean, and adolescence and teenage years can already be challenging enough, but to add something like SMA into the mix and it can be overwhelming. For me, a little bit older now, time has provided perspective. I celebrate the victories and positives rather than the losses and negatives. I mean, we have treatments, and choices with those, just as one simple example. I lost a brother in 2004 when he was at the age of 44 due to complications from SMA. He never had the benefit of treatments, so I try to live in honor of him and appreciate the positives more. I acknowledge the losses, but try to develop a plan on how I will attack them. Muy last PT assessment did not go well for my RULM score. I was devastated, but am now planning on switching to Evrysdi as I may have plateaued on Spinraza. Just got home from my last Spinraza injection at Hopkins earlier today and will start the transition process in the coming weeks.

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