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  • Everysdi + PT/OT

    Posted by christopher-walters on April 20, 2023 at 12:17 pm

    Hi, just curious how often everyone currently taking Everysdi is getting pt/ot, physical activity? Are you seeing any gains?

    Both drugs have a necessary exercise component to them but it seems it’s never discussed and the agencies that supply pt/ot and insurance don’t care or don’t understand it at all. My son gets 3 days of each for 30 minutes, but that’s 30 minutes from the moment the therapists walk int he door and take off their shoes to the second they are re-shoeing and leaving, it’s really just not enough, so I’m working on way to increase my little boy(13)’s exercise regiment.

    mike-huddleston replied 1 year, 1 month ago 5 Members · 5 Replies
  • 5 Replies
  • mike-huddleston

    April 20, 2023 at 2:38 pm

    Hey Chris –

    I’ve been on Spinraza since May of 2018, having been in the group of the first five adult patients in my state to receive treatment.  I recently turned 60, so am toward the other end of the spectrum age wise than your son.  I am no longer ambulatory as of 2015, but do PT twice a week, once in clinic and once in the pool.  I also work with an adaptive sports trainer weekly.  Each of these is approximately an hour.  I also started exercising before I was diagnosed way back in 1979 and maintained that commitment.  That said, since treatment, I’ve ramped it up to 2 – 3 hours a day with my home exercise program (HEP).

    I might suggest working with either your son’s PT or neurologist, or both, to create an HEP for your son.  It doesn’t need to be as aggressive as mine, but perhaps augment the things done in therapy or focus on things too time consuming to address in your son’s shorter sessions.

    As to am I seeing any gains?  The short answer is yes, but that is qualified.  Please keep in mind that all of the initial trials were done with patients with shorter experience periods of SMA than mine, so your son’s actual mileage may vary.  I have seen some areas of strength gains and even some muscle growth in my quads (VMO area), anterior tibs, and hip flexors.

    Whether or not your son is ambulatory, load bearing is very important, as is cardiovascular exercise (maybe an exercise or recumbent bike/stepper).  Proper diet is also important for overall health, so if the MD clinic you go to provides access to a dietician, take advantage of this.  And finally, I also use a e-stim device, mostly on my thighs, to help stimulate muscle contractions.  Remember that most/all SMA patients suffer from loss of motor neurons.  Currently, and it would be nice if this changes, that once they die, they do not replenish.  So, talk with your son’s neurologist to get suggestions on trying to effectively keep or maintain these.

    I know it’s a lot, but obviously this is a topic near and dear to me.  Feel free to message me directly if you’d like to talk about any of these suggestions.

  • dennis-turner

    April 20, 2023 at 2:39 pm

    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.


  • deann-r

    April 20, 2023 at 6:30 pm

    Acquiring pt/ot through insurance can be frustrating. It seems like they’re focused on gains when those of us with SMA know how important maintenance is. I’m on Evrysdi and haven’t really seen gains, but feel I’m holding steady. As Mike and Dennis mentioned a home exercise plan is good. For me though I’ve found more benefit from just being active and having fun. As a kid I dreaded pt and ot. On the other hand I loved fishing (great for dexterity) and going to the pool (also good exercise.) Finding something they love to do that activates those muscles can be just as beneficial.

  • anna

    April 21, 2023 at 1:02 pm

    I can’t talk about gains as I’m only starting the treatment now, but no one recommended modifying my exercise regimen in any way. I’m getting PT twice a week in 45 min sessions. I thought it wasn’t worth my time and money (insurance covers only 80 sessions per year) until the pandemic hit and had to stop. The impact it had on my body made me realize I was wrong.

    OT is kinda pointless for me, as my mobility is very limited now, but was quite helpful when I was your son’s age, and fun physical activities were even more effective! I would encourage him to try anything: painting, drawing, crafting, swimming, adaptive musical instruments… as long as it keeps him active and engaged. In my experience, both PT and OT can bore a teenager to death!

  • mike-huddleston

    April 25, 2023 at 4:51 pm

    As both DeAnn and Anna said, OT/PT can be boring. Finding activities that are of interest and will keep your son engaged and participating will be important.  A lot of it will depend on your son and how he feels about this.  A properly developed and followed home exercise program should reap many benefits, again, as long as your son is interested in them.  Concentrated PT by someone who understands SMA or neuromuscular conditions could be huge and significant.  You don’t elaborate on your son’s condition here, but if in clinic therapy doesn’t get it for him, aqua therapy is absolutely wonderful. There are so many things we patients can do in water that we are unable to do in either actuality or safely on land.  Perhaps this option is available?

    I met Jennifer from Wave Therapies at a recent CureSMA Summit of Strength event in Baltimore at the end of March.  The PT I work with is amazing and Jennifer was impressed with our aqua therapy routine.  She is out of Seattle (I believe), but may be able to provide a local contact or resources.  Or again, so might your local MD clinic.  That’s how I found my current PT back in 2016.

    Wave Therapies – Aquatic Physical Therapy Serving the Puget Sound

    Best wishes to your son.  Please let us know how this progresses.

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