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    • #22150
      Dagmar Munn
      Keymaster

      Many people do not understand why physical therapy (PT) can help people with ALS because it is a progressive disease. While physical therapy cannot halt the inevitable loss of muscle strength, PT can be of support for people with ALS – – helping them maintain whatever independent function they are capable of, at different points throughout the course of the disease.

      In the ALS Clinic setting, physical therapists often prescribe equipment such as braces or walking devices to help maintain the ability to walk. Some ALS patients are prescribed ongoing private PT sessions, either at the PT clinic or in the patient’s home.

      If you had (or are having) multiple PT sessions, were they helpful for you? Would you recommend others try private PT sessions? What are your thoughts about PT and ALS?

    • #22251
      Mary Jo Peterson
      Participant

      I’ve had a couple in home PT sessions to demonstrate for my caregivers how to do range of motion exercises. I get them done every day. It helps prevent stiffness.

      • #22253
        Dagmar Munn
        Keymaster

        Mary Jo, …range of motion exercises, every day! Bravo!

    • #22254
      Suzanne Gallo
      Participant

      I take my PALS for PT 2-3 days per week, at NeuroFitness, a business specializing in movement disorders.
      He is in a power chair most of the time, so he gets very stiff.
      he enjoys the other patients at the PT business, so he gets a social visit as well.As long as we can keep up the trips, we will go- then transfer to home visits.
      as a full time CALS, it gives me a break not to have to stretch out my hubby everyday.

      • #22284
        Dagmar Munn
        Keymaster

        Suzanne, that’s good that you still do at-home stretches for your husband between the PT visits. So many pALS rely on only the weekly PT sessions for their movement. But bodies need to move every day – – whether we’re doing the movement, or someone is helping us do it.

        I know it takes a lot of your energy to help him stretch daily, but I’ll bet you’re having a positive effect on his emotions too!

    • #22258
      JohnW
      Participant

      Hello Dagmar,

      By God’s graces I am a slow progressor  with symptoms in feet and lower legs. I have been lucky to have the same physical therapist for 4 years now. We normally are scheduled for 2 sessions per week. We work on hamstring stretching, range of motion. Core exercise and also balance.  I highly recommend this for those who are able. With the assistance of a cane and AFO I still am able to walk. I attribute  this to the PT program.  I would also like to point  out to those on medicare the PT sessions for PALS is covered when using the KX modifier on the billing. I was private pay until I found out about this billing. I hope this is helpful for those wondering if PT is beneficial.

       

      • #22285
        Dagmar Munn
        Keymaster

        That’s very helpful information John, about medicare access. Thanks for sharing it – – and, along with how your PT sessions have been helping. Keeping our ALS-bodies in alignment and moving, I believe, contributes to slowing down symptom progression.

    • #22259
      Rebecca D.
      Participant

      I’ve been in PT for about a year. What started as strength training for my upper back & core evolved to a lower body focus after I complained to my therapist about tripping all of the time last August. Two neurologists and multiple EMGs & MRIs later, I was diagnosed with ALS on May 10th. My right foot drops and my leg is extremely weak. I’m still going to PT and focusing on maintaining strength where I can.

      • #22286
        Dagmar Munn
        Keymaster

        Rebecca, I’m happy to read that you are continuing your PT sessions. I suggest you keep a focus on strengthening your core. Plus, breaking up your at-home exercise into short sessions throughout the day. That way, you can keep your energy up and not overtax your weak leg & foot. During my 1st yr with ALS I learned the importance of adapt, adapt, adapt – – but, do keep moving 😉

    • #22260
      Len Jax
      Participant

      Hi Dagmar,

      I have had PT twice weekly for the last seven years.  It is not in an ALS-affiliated clinic but one close to my home for convenience. They do communicate regularly with my neurologist.

      When I started PT, I was walking with a cane, progressing to a walker six months later, and finally to a power wheelchair about six months after. Currently I am in the wheelchair 99% of the time but can still do transfers and walk very short distances using my walker.

      Given my rate of progression, I thought I would no longer be able to walk five years ago. I attribute my continuing mobility directly to my access to PT. My therapist has been exceptional, a great resource, and a friend. He helps me on to the table for stretches, onto the bike for warmups, and into the leg press to keep my legs strong. I just met my goal of walking and doing transfers on July fourth. The goal dates are getting shorter, which brings awareness that I have to accept the eventual end of this ability.

      • #22287
        Dagmar Munn
        Keymaster

        What a positive report on how PT has helped you through the years! Keep setting those goals…it’s what keeps us pALS looking forward.

    • #22262
      John Ceriotti
      Participant

      I have been doing exercises on my own… Not consistently but I have been doing exercise says on my own. I am meeting with the PTS next week at the Washington University Oerthwein center… And my occupational therapist is going to attend and both of the investigational doctors whom I work with on the Toferson study are both excited to hear the results. I am hoping they are developing an actual PT program since the Topher son is cautiously optimistically stopping the progression of my disease and actually increasing the strength in some of my limbs…

      • #22288
        Dagmar Munn
        Keymaster

        We look forward to your future check-ins letting us know how you are doing!

    • #22275
      Patty
      Participant

      No. I inquired about P.T. At the ALS clinic at the Cleve. Clinic.  The physical therapist and the dr. There did not recommend it. The physical therapist stated muscles won’t be built up, all therapists are not familiar with als therapy, and if the muscles are overworked, they will break down more.

      • #22289
        Dagmar Munn
        Keymaster

        Patty, I agree that you can continue keeping your body moving with at-home sessions, rather than formally seeing a PT. But a PT or OT can give you guidance on what exercises to do.

        It’s not about “building up” muscles, it’s about maintaining the muscle strength you have now.

        Actually, the muscles won’t break down from overwork – – it is from not using them in the days you are recovering from a too gung-ho workout. They weaken from not being used. It is better to do a daily routine of gentle exercise movements (and range of motion for the joints).

        I believe all therapists are familiar with how to recommend gentle exercise at-home programs. They work with seniors, patients in rehab, with Parkinson’s, MS, etc. We with ALS are no different.

    • #22276
      Patty
      Participant

      Physical therapist did suggest doing exercises on my own, ie. walking, recumbent bicycling, stretching.

    • #22279
      John Ceriotti
      Participant

      I strongly believe and will say remaining cautiously optimistic that the ALS physicians are actually discussing with me muscle tone, muscle strength, etc…with the advent and creation of Toferson.  I have had 14 doses on the Extended Access study and read hard data thru the Munex Test is showing cautiously optimistic results.  I am not looking at the world thru rose colored glasses yet when physicians, OT’s and PT’s are discussing whether its maintenance or strengthening along with stretching of the PALS muscle groups…because of our new treatments I remain positive and know I can at minimum live with ALS and it is not a 2 year death sentence.  I hate reading crap like that!  My one physician has a background in muscle related education along with nutrition and neurology…we all can benefit from these new treatments.  I also take a regimen of daily supplements including Creatine, Vitamin E,  B-12, D, Ginseng and even Gingko Biloba.  Some people find some progression slowing with the Tumeric.  My research physicians asked me not to take that while in the Toferson studies…I would think someone has seen something positive if they did not want it to impact the results of the Toferson drug…just my 3 cents worth of opinion.  If PT’s and OT’s and Physicians are seriously discussing actual Physical Therapy programs for PALs, I think we should remain cautiously optimistic and see where it leads us.  There are so many new treatments on the horizon that I 110% believe it will be a combination of therapies on an individual basis that will prolong life and lead to a treatment that actually regenerates the damaged neurons/cells and gives us hope for a longer life if not a full cure.

      • #22281
        Amanda
        Keymaster

        @John C.,

        That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did not qualify for that trials because I’m still in the Pre-fALS portion, thankfully. I know research seems slow but I think they are learning more and more each day!!

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