Log In or Register to Join The Conversation!

Sponsored Post

How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 22 replies, 5 voices, and was last updated 2 years, 1 month ago by Mike Huddleston.

  • Author
    Posts
    • #12355
      DeAnn R
      Keymaster

      Without getting into the science of it, Spinraza helps get complete messages to the muscles for those of us with SMA.  Prior to Spinraza many of us with SMA used physical and other therapies to maintain function.  Unfortunately it was inevitable that we’d see a decline regardless.  For me it was difficult to continue with therapies when I would just get worse anyway.  Now that I’m on Spinraza I see the value of therapy.  In fact I recommend it even for those not on the drug.

      I decided to try occupational therapy to work on my arms and dexterity.  It’s been years since I had done any type of therapy.  Surprisingly stretching is my favorite part.  We also work on movements that aren’t my norm.  Honestly I feel silly when I can’t do the simplest of tasks, but my therapist never makes me feel bad about it.  Improvements have been minor, but they have happened.  Some days I feel back to square one, but again just to maintain is important.  I realized if I had done therapy all along, some of these exercises would be easier.  Oh well, no looking back. Onward and upward!  Now if I can get my arms to move upward…we’re working on that.

      What therapies do you do?  Occupational therapy, physical therapy, aquatic, speech, vital stim, something else?  I’d love to hear your experiences.  What works for you?  What doesn’t?  Do you have a favorite exercise to share?

    • #12357
      Kevin Schaefer
      Keymaster

      Acquatic therapy is by far my favorite form of exercise. I’ve been doing it regularly for about three years now, and it’s one of the things I look forward to the most every week. I was initially skeptical about transfers and such, but the pool I use has a great set up. My PT transfers me into a manual chair, and then wheels me into the pool. The pool has a built-in ramp.

      I feel extremely liberated in the water. My muscles are looser, and after doing this kind of therapy for several years, my PT has noticed a significant difference in my flexibility and capabilities. I definitely think it helps to keep doing it now that I’m receiving Spinraza.

    • #12412
      Adnan Hafizovic
      Participant

      I exercise every day at least 30 minutes.It is good exercise to doing any movement for example:I can dress of course I need more time to do it,eating and like you said DeAnn streching is very good and massage.

    • #12417
      DeAnn R
      Keymaster

      Glad to hear you’re keeping moving! What types of exercises do you do?

    • #12434
      Adnan Hafizovic
      Participant

      My main exercise is dress off and dress on,eat with my hands,anda classical exercise lifting hands and every day my mom streching my hands and  she massage my hands and neck.Sometimes I don t feel good because I m tired and then I m not able to do all that.

      • #12440
        Kevin Schaefer
        Keymaster

        That’s good you have a routine worked out. I have very limited arm and upper-body strength, so dressing myself isn’t an option. However, my caregiver helps me stretch my arms while I’m doing my chest PT. And like I said, doing regular water therapy helps me tremendously.

    • #12817
      Mike Huddleston
      Participant

      Since I was a kid, I’ve exercised.  I was basically symptom free until the age of 13 or 14.  But I’ve continued to exercise religiously ever since.  I currently do aqua therapy weekly, and every other week I do land PT sessions for stretching and some strengthening exercises.  At home, I do light (uh, of course!!) dumbbell exercises, as well as stretch resistance bands.  This includes arms, legs, shoulder and hand exercises.  I also have a recumbent stepper, a NuStep, that is a bit of a pain to transfer off and on, but I am trying to re-introduce that into my routine.  As mentioned in my other post, recent transfers have seemed to be easier, so that may make this NuStep a little easier to include.  I keep a detailed log of my workouts and have for over 20 years.  Now on Spinraza, I will also document any positive or negative trends (exercises becoming easier or harder, more or less weight, etc.).

      • #12824
        DeAnn R
        Keymaster

        It’s awesome that you’ve kept it up through the years.  Any advice on keeping motivated?

        • #12848
          Mike Huddleston
          Participant

          Hey DeAnn  –

          Tough, but fair question regarding staying motivated.  I’m a very hard headed/stubborn individual.  I suppose part of my persistence was based on observations of two older brothers dealing with SMA with an earlier onset age than mine.  I always tried to take as good of care of myself as possible, hoping (but not counting on) to be in the best shape possible should some treatment become available.  It took 40 years, but that time is now.  🙂

          Another thing, the doctors I saw when I was in my early 20s at the MD Clinic in DC told me there was no evidence that exercising helped.  I told them I could feel the difference when I worked out and when I didn’t, so I was using my body’s signals as my guide, not their opinions.  These were the same doctors who told me there was no way I’d walk past the age of 40.   I dusted that by 12 years, although admittedly, the last few were hairy at best.

          And finally, it was always just a matter of adopting these as a habit.  Do what I could for as long as I could and see where it takes me.

          Not sure if any of that makes sense?

        • #12906
          DeAnn R
          Keymaster

          As far as keeping motivated, your explanation makes total sense Mike.  I’ve always had the philosophy, move it or loose it.  What’s difficult for me is the part that with SMA you can loose it even when you move it.  I’ve come to the conclusion balance is key.  That’s why I’ve changed my tune regarding therapy.  Glad to see it’s benefited you throughout the years.  Keep it up!

    • #12831
      Chantell Venter
      Participant

      I also enjoy aquatherapy on a weekly basis. Now that it is winter in South Africa it is on the back burner for the moment. Although the pool is heated and indoors the change rooms are not accessible so I cover up well and dress once back home. Winter weather does nt allow for this. Can’t wait for warmer weather. Not only do I get the exercise and freedom the water offers it also helps me to clear my mind. And having a great physio is a big bonus. He is very dedicated and constantly comes up with new things for me to do. At the moment I just get physio on land which also helps but the water is still best for me.

      • #12832
        Kevin Schaefer
        Keymaster

        I definitely relate. Water therapy does wonders for me physically, and it really helps me release tension and combat stress. Hopefully it won’t be too long before you get back into it!

      • #12858
        DeAnn R
        Keymaster

        With aquatherapy, do you find it difficult to get into and out of the pool?  That’s one factor that’s holding me back.

        • #12860
          Mike Huddleston
          Participant

          The pool I go to has two indoor pools; one regulation size for swimming laps, etc, and a therapy pool.  Both have a transfer/lift chair.  I do this with a therapist and would not be able to handle the transfer alone.  At it’s lowest, my power chair is at least 6 inches above the highest point for the transfer chair.  Transfers to the transfer chair are down hill and thus easy.  When I get out of the pool, my therapist stacks 5 float boards (I don’t know what the name of these are, but they are maybe 15″ long by 8 or 10″ wide and about an inch thick) underneath me (I lift up in the chair and she places a few at a time under me).  This makes the transfer back to my chair slightly uphill rather than significantly.  As mentioned in another thread, last week I handled the transfer back to my chair without her assistance, but still would need her or someone there.

          So, DeAnn, if you have an indoor or therapy pool available to you, you might want to check out the logistics to see how it might work for you.  I only started in the fall of 2016 and wish I had done it years before.  Good luck!

          And Chantell, I go in the winter as well, but park close and zip quickly to my van.  It’s not fun in the cold and being wet, so I completely understand.

        • #12873
          Chantell Venter
          Participant

          At home I use a patient lifter with a sling. My dad made me an adaption that attaches to the hoist at the pool so I can use the same sling to get in and out of the pool. The hoist uses a hydrolic mechanism that my physio operates. Works very easy and comfortable for us.

          Mike my parents, especially my dad, is very protective of me. Even though I am 45 with a mind of my own he still wants to say when I can and can not do things in the cold. It drives me crazy sometimes. He doesn’t realise or doesn’t want to realise that not only will I not get into the pool if it is too cold but my physio also won’t put me into the pool if it is too cold either. He, my physio, knows very well what the complications are when I get sick as he is involved with the treatment to get me healthy again. And we both, my physio and I, know that it takes a while to get me back strong enough to get back into the pool so neither of us will take unnecessary risks.

        • #12878
          Kevin Schaefer
          Keymaster

          Yeah that’s good that you take it easy and your physio is aware of your needs. And yeah, I think SMA parents are always going to have a tendency to be overprotective. It’s just natural. Sometimes though you need to have those tough conversations with your parents and say that you’re capable of making your own health decisions, especially when you’re an adult.

        • #12890
          DeAnn R
          Keymaster
          1. You’ll always be his little girl, no matter what age! It’s awesome that you can get the sling to work at both home and the pool.
        • #12895
          Mike Huddleston
          Participant

          Chantell, apologies if I came across that you should throw caution to the wind and still go in the cold weather.  I do, but I’m also too stubborn for my own good sometimes.  Obviously you, your father and your physio are more in tuned to your situation.  Definitely appreciate not subjecting ourselves to unnecessary risks.

        • #12910
          Kevin Schaefer
          Keymaster

          I have a water therapy appointment today after a few weeks off. Between traveling and the pool’s schedule, it was difficult to schedule any appointments in June. I’m looking forward to going back today though.

          And DeAnn, I was nervous too about transfers when I first started, but it’s actually quite safe. The pool I use has a built-in ramp. My PT transfers me into a manual chair via hoyer lift, and then drives me into the pool. It works out well, and I’ve definitely seen improvements with my muscle flexibility, especially with Spinraza.

        • #12927
          Kevin Schaefer
          Keymaster

          Well I was supposed to have PT last Friday, but right as I was about to get in the pool it started thundering outside. Despite it being an indoor pool, they couldn’t keep it open if there was a thunderstorm.

          Fortunately I didn’t have to get all the way in and then back out immediately, but it was still a little irritating. I was able to stretch some in the manual chair though.

        • #12938
          Mike Huddleston
          Participant

          Sorry to hear that Kevin.  I know my aqua therapy is a high point of my week, so can relate to how disappointed you must have been.

          That is absolutely the right thing to do when there is a threat of lightning, even for a lightning rod (grounded) equipped indoor pool.  There have been cases where an ungrounded structure near an indoor pool has been hit and the lightning deflected into the indoor pool area.

    • #12851
      Mike Huddleston
      Participant

      Also of note, and not sure if I’ll be able to get this into a regular routine, about a month ago I did a demo of a Lite Gait portable harness machine through my water therapy PT.  She’s trying to get one in her clinic, so asked me to participate in the demo.  I did and was able to walk on land through this machine’s support.  If they approve this for the clinic, my land appointments will become weekly instead of bi-monthly.  🙂

      Interesting, as it turns out, this was on June 5th.  That was exactly 3 years to the day (06-05-2015) that I took my last step on land.  If they acquire one of these, I’ll provide updates.

      • #12859
        DeAnn R
        Keymaster

        That’s awesome Mike.  You should post more about this device in the technology/equipment forum.  Sounds interesting.

Viewing 7 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.