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    • #20204
      Mark Shefsiek
      Participant

      One of the things I have noticed about some of of the higher profile people with ALS in the news lately is they have used their skills to become intense advocates for a disease the might not have ever thought about until it snared them in the web.

      It is inspiring to me. My skill prior to my current state was neuromuscular rehab using a wide variety of physical medicine and meditation. The last patient/student I treated was 2 1/2 years ago. I was stay at home dad but working part time with select long term clients. I quit because my hands could not work the way I needed.  This last week the dysfunction in my hands  progressed a lot.

      I have a confession. I did not know anything about ALS/MND. In 25 years I never saw a patient with the disease. This includes working a number of years in hospital clinics. I treated many with head/spinal injuries, MS, migraine, stroke……not one person with ALS.

      I spoke recently with friends and colleagues with decades of experience as PT, Chiropractor, Pain physicians. Not one person with ALS found their clinics. I have read too many stories of people essentially being told go home and be with you family.  The lack of rehab, grief therapy, pain management….is vile.  The disease itself is so isolating, people need every compassionate touch or conversation they can find.

      The alt med world is confusing and chaotic, not to mention snake oil and disinformation, but there are some very gifted people and interventions that are 100% safe and can improve quality of life.

      I may not be able to use my hands or demonstrate exercises or yogas, but I still understand them.  So when the kids get back in school, I am going to create a website to explain how my  view of illness, rehab and treatment is different and hopefully connect people and honest, compassionate and skilled providers.

      Be well.

    • #20209
      Dagmar Munn
      Keymaster

      I support and encourage you, Mark! Your goal to create a website explaining the various ways alternative & complementary therapies can help with ALS is wonderful… and needed.

      You are mirroring the same feelings I had when I was diagnosed nearly 11 years ago. During my 30+ years working in hospital-based wellness (alternative & complementary therapies) https://alsandwellness.blogspot.com/2016/05/cam-wellness-als-and-wellness.html I never heard of ALS. Upon being told I had it, I was shocked at the lack of positive, supportive resources. Everybody was telling sad stories; sharing their stages of degrading and there was a lack of hope.
      This is where the snake-oil alternative medicine practitioners step in… taking advantage of vulnerable patients and their families.

      It prompted me to start my ALS and Wellness Blog, write an ebook on resilience, and to continue writing and sharing motivation for others living with ALS. (Back in 2010, they called us “ALS patients”… I think I was the first to introduce the concept “living” with ALS 😉

      We need more voices like yours, Mark. 🙂 I look forward to reading your future website.

    • #20211
      Mark Shefsiek
      Participant

      Thanks for the encouragement.

      There is such a disconnect between from a pure neuro-physiological frame work of what “should happen” and what is clearly happening.

      I try to look at myself as a person I am treating. What would I do if I walked in?

      For example over last week, with my left hand palm down I can’t  spread my fingers. If I really try for a while. I can move them a little and they shake.

      If I turn my palm up I can do it. This makes no sense from the nerves in arm/hand perspective. The start position shouldn’t matter. But it does.  So I create all sorts of novel exercises to see if I can get the function back.

      The first thing I would do is ask person how they experience a loss of function. For me it’s like a very specific data file was deleted.  So I try to write out a new program.

      If anyone wants to write out, as the remember, how would you describe the “feeling” of physical loss, it would be very helpful to my understanding.

       

    • #20212

      > If I turn my palm up I can do it. This makes no sense from the nerves in arm/hand perspective.
      Intriguing! I guess that it makes no sense if we think of nerves as electrical conductor between the brain and the muscle. Here is a random speculation:

      However it’s a bit more complicated. When we make a movement, the primary motor area in the brain has no notion of which muscle must be activated. It’s more like the “intention” to make a movement. The actual activation of muscles is done by lower motor neurons, and in some cases, the interneurons which are linking upper to lower motor neurons inside each vertebrae. The interneurons are for example involved in repetitive movements.

      So what “may” (I am nor a scientist/doctor) is that in the motor area of your brain, there are some upper motor neuron bodies which are dysfunctional while other upper motor neurons are still able to evoke stretching your finger. The only difference between the former and later upper motor neurons is perhaps that the latter are activated when your palm is upward.

      If I am correct, you are right to develop exercise to “see” if you can get back the function. The brain is malleable and as long as the lower motor neurons are healthy, it may work.

      Good luck!

      • #20215
        Mark Shefsiek
        Participant

        In general you are correct about the movement being based on functional intentions.

        However, because of extreme training over the course of 35 years, I developed refined ability to activate/effect specific muscles or physiological functions.

        When I was 16 I was in a biofeedback study.  I could control things like surface temp, heart rate, reduce muscle activity in any part of body. Much later I used EEG feedback.

        I also have spent decades moving joints one by one every day though gentle range of motion movements.

        My daily practice is how I knew I had a problem and how I manage.

        If it was up to me there would be an intense program in the first month post diagnosis. Most people have never given any time to understanding their physiological function.

        I have great insurance, so last December when I had a sudden voice issue, I referred myself to a voice clinic and got speech therapy before I really needed it and it helped a lot and now I have a relationship with clinic.  The SLP taught me things I had not considered and they caught my swallowing issues so I am much more careful and work on the issues.

        One of my goals is to create a diagnosis survival guide. Learning breathing, relaxation, gait training, transfers, vocalization, swallowing skills right after dx would be extremely helpful and empowering.

    • #20216
      Amanda
      Keymaster

      Mark, I think you have some wonderful ideas! Please keep us posted and share links to your work. I’m looking forward to seeing what you bring to the community.
      Amanda

    • #20219
      Susana Rave
      Participant

      Mark,
      Looking forward to reading more of your posts and visiting your website when it’s available!!  We would all benefit from the therapy/exercises.

      Susana

    • #20220
      Sandra Mikush
      Participant

      Mark, this is a fantastic idea! I am newly diagnosed and have found this Living with ALS message board the Dagmar’s ebook and ALS Wellness Blog incredibly helpful and hopeful. I’m incredibly fortunate to be a patient at the Duke ALS Clinic, and Dr. Bedlack and the team there are very encouraging about tapping into all kinds of resources. At my last Clinic visit this week, I asked about acupuncture and was impressed that Dr. B encouraged me to pursue that and share his report on the ALS Untangled website. Dr. B treated my dad late in his progression, and his hopeful and realistic approach made a huge difference to my family. I’m so grateful for those of you who are advancing a positive approach to living with ALS.

      Sandra

      • #20222
        Mark Shefsiek
        Participant

        I wrote Dr B over 2 years ago and he responded personally and I intend to try to connect with him.

        I worked professionally with a number of acupuncturists and the important thing to know is there are many different styles and nuances and with all physical intervention it is VERY dependant on provider.

        It is what makes research so difficult. We would create research protocols for an illness/problem that were repeated every time.  One time I volunteered to be patient while we were developing protocol for needle placement. It felt horrible because it was wrong for me and really turned me off acupuncture research.

        Thats not how it should work. Good treatment is in the moment and may be similar over multiple visits, it is seldom the exact same and never across multiple people.

        Good luck with it.

        • #20224
          Sandra Mikush
          Participant

          I appreciate your perspective. I guess that was the reason Dr. B suggested I share the protocol that was used in the Chinese clinical trial that is the basis of the ALS Untangled report. I’ll keep you posted and will look forward to your website!

    • #20221
      Bill
      Participant

      Hi Mark,

      My experience also is that PTs don’t have experience with ALS. I understand why. With me loss like with my hand is because of pure muscle atrophy not brains message at all. Hand still “responds “ but too weak to do virtually anything. It was a long slow almost linear decline over at least 5 years maybe more as changes weren’t alarming. I don’t believe my years of attempting to keep strength helped at all but then I’ve got a sample size of one. I really can’t say it hurt either though.
      Keep up the good work.

      • #20225
        Mark Shefsiek
        Participant

        Bill,
        <p style=”text-align: center;”>I have generally had the progressive week after week weakness and then just in the last two weeks my fingers just stopped.</p>
        I am testing strength every day or so and don’t have great expectations of improvement, but I do know with me repetitive movements with resistance are not helpful.

        I recently had a Neuro PT eval and we decided that it wouldn’t be advisable because the exercise intolerance is too great.

        I have seen people riding stationary bikes, etc and that would be impossible for me and yet their motor functions are far more impaired than mine.

        PT over the last decades has been largely absorbed into sports med with strength and endurance training.  It is hard to find trained manual therapists that teach movement efficiency and mobility.

         

         

         

        • #20251
          Dagmar Munn
          Keymaster

          Mark, I highly recommend you look into the movement series taught by Original Strength. They are really on to something!

          Teaching people to regress to relearn how to crawl on hands and knees, roll side to side, rock, and move the head… all help our brains re-connect with our muscles.

          I found that during my first years with ALS, that traditional exercises like yoga, tai chi, and resistance bans were too sophisticated for my brain-muscle path of communication. But the Original Strength series called “Resets” was something I could do and, they helped me transition into more traditional exercise moves.

          I’ve been doing them daily for 11 years now, and wrote about it here: https://alsandwellness.blogspot.com/2015/10/a-language-that-speaks-to-all-bodies.html

    • #20227
      Bill
      Participant

      Mark, I’m currently doing a short stint with PT to evaluate my walking and balance as I’ve had  two head into floor falls. I’ve really had to explain things about ALS. I think PT is likely going to help more with exercises to help with strengthening due to my ALS (and self) induced more sedentary lifestyle along with my age. Should help my balance and stability.

      • #20228
        Mark Shefsiek
        Participant

        Bill, sorry about the falls.

        There are good PTs that are skilled with balance and fall prevention. Most of them work in-patient Neuro rehab units.  While it is a little “off label” many hospitals have vestibular rehab programs.  I would also seek out PTs that work with Parkinson’s patients.

         

      • #20252
        Dagmar Munn
        Keymaster

        Bill, balance is not only from strength in leg and feet muscles but also from keeping our vestibular (inner-ear) system stimulated too.

        This may be of help to you:
        https://alsandwellness.blogspot.com/2016/08/balance-from-outer-space-to-inner-ear.html

        I hope your PT has been including inner-ear exercises in your visits. If not, try the ones that I suggest.

    • #20230
      Bill
      Participant

      Thanks  Mark, the one I have was assigned due to experience with walking and balance. So far I score normal for a 72 year old guy on the tests. I was rigged up to a balance check machine yesterday. Seems pretty thorough. I’ve got to be very careful if I get hot, tired or dehydrated and get the bit of brain fog.

    • #20231
      Trevor Bower
      Participant

      Mark,

      Thanks for your insight and thoughtful comments about ALS. I can echo what you said. I’ve been through three medical systems here in North Carolina. They couldn’t figure it out, so the Duke doctors enrolled me in the Undiagnosed Disease Network. So many lab tests, exams, MRI’s and on and on  including two different universities  DNA Analysis with the conclusion that I do not have ALS. Finally,
      I was given the diagnosis of having a new variant form of what appears to be ALS. So far it only affects me from the hips down. A plus.  I’m looking forward to your commentary Mark!

      Trevor

      • #20234
        Mark Shefsiek
        Participant

        Trevor,

        Your path is very similar to mine minus the genetic testing.

        I think with greater awareness comes more people and an greater understanding of the chaotic nature of the disease. There is this history of an adherence to a rigid linear path and presentation.

        I remember early in my career I treated a desperate woman that was diagnosed with Limb Girdle Muscular Dystrophy. She was unable to stand at all.  I was 27 and had no idea what I was doing with her. Looking back, she had no atrophy and I could get her to engage muscles of legs. I really thought I was going to get her walking.  It didn’t go well.

        She like so many others I saw in Integrated Medicine Clinics had Non-typical presentations of whatever they had. (I made the point I couldn’t legally dx anything). 90% of people in clinic were women and another large cohort were dx’d with depression and while Drs didn’t put it on chart, conversion disorder. I read my notes and I see the code words and boilerplate.

        Anyone that spends more than a few months in dx hell will have more than a few interactions when you know the Dr is thinking “they crazy”. Trust me that is a technical term they use when you are not in room.

        When they let me in the physicians cafeteria and treat in hospital, I saw behind the doors and it isn’t great. I don’t like complaining about Drs, because we need them, but we need them to not be so certain all the time ever after so many of their “certainties” prove to be wrong.

         

         

         

         

         

         

        disorder.

         

         

    • #20226
      Carol
      Participant

      I swear by pool therapy, where I move without pesky gravity. I’ve been a life long swimmer so I take to it like a fish…And I wonder why it isn’t mentioned much in these blogs. My German friend says medical pools are used a lot more there.

    • #20263

      I am Jim Olejar an als patient diagnosed 12/18 with symptoms starting around 3/18. My problems began with gamer toes and bilateral foot drop. I managed to continue working as an electrician 8/19. Since that date I progressed from ago then added a cane then a walker and now a wheelchair. I still try to enjoy life and my wife and I make a point to go out to lunch every day. It helps both our sanity. I enjoy finding Dr. Bedlack when he posts any new webcasts. Good Luke to all of you.

    • #20269
      Carolyn Barry
      Participant

      Trevor,

      Could you possibly explain what it is that your tests showed, to give you the diagnosis of an alternate form of ALS?  I’ve never heard of this and I’m interested as to how your doctor came to that conclusion.  How did you feel when you were given this diagnosis, which sounds quite different from ALS as we all know it?

    • #20303
      MaryConnolly
      Participant

      Dagmar—is the Original Strength program you follow the work of Anderson and Neupert? I’ve seen a book and videos out there on the internet.

    • #20411
      Sandra Mikush
      Participant

      Does anyone have experience with acupuncture to treat ALS? I’ve read the report on ALS Untangled and know that most treatments are used to relieve symptoms. I’m wondering if anyone knows of acupuncture treatments that relate to slowing progression of the disease and, if so, what regimens are used. Thanks for any insights.

      • #20416
        Mark Shefsiek
        Participant

        As I mentioned in another post, acupuncture and energy medicine doesn’t and really can’t conform to western diagnosis.

        If you go a skilled practitioner, they will feel your energy/pulses.  You feel where there is too much, too little, out of balance and treat to bring into balance.

        You assume that will relieve symptoms improve function.

        IMO after working with acupuncturists and having a lot of “energy” based therapy, if your interested find qualified people and sense who you trust and try it.

        The biggest red flags are people that are obviously anti science, selling all sorts of stuff, make any promises.

        When I treated people, the approach I always used was, “I don’t know, but will try my best.”

        My best friend came to visit and treated me for a few days.  I am more alive, breathing and walking better.

        I don’t know how long it will last, but the treatment effect should be noticable and in one or two treatments.

        If not try another, maybe another after that.

    • #20426
      Richard Maloon
      Participant

      Hi Everyone. Diagnosed jan 2021, probable symptoms started 6/2020. Progression: slow in the sense I can compensate for most everything except the loss of my left arm. Beginning to have symptoms in the right arm. I wanted to list my medicine and snake oils that’s all:
      Melatonin
      Charcoal
      Prevagen
      L-Serine AND
      Riluzole.

    • #20427
      Joan
      Participant

      Thank you

    • #20435
      NJGuy
      Participant

      Hi All – the chosen ones :))  particularly when being 1 in 100,000!!

      Diagnosed with PMA in Jan2021, weakness in my legs started in summer 7/2020 with stiffness in calf muscles on both legs, could not walk more than a mile. Slow progression, first had bilateral foot drop, but used the AFO to walk with balance. But the weakness progressed and now I have to use walker. And for the med treatment: I take Riluzole, vitamin supplements (D, B12, E), CoQ10, Omega etc.

      For the subject “the alternative med and ALS”,  the med science really throws away any such medicines / therapy unless there are proven records / trials.  I have read Dr. Bedlock and really appreciate his views for alternative meds for ALS, and further there are some which are in active clinical trials (like Theracurmin) .

      A. Particularly for me, I remember I was taking turmeric tea (teaspoon of turmeric with little salt and lemon in glassful of warm water) regularly till last summer and not sure why I stopped it. And then I started seeing symptoms of weakness. I have started that again for a few days, and I hope to see better effects.

      B. I had also tried acupuncture for the stiffness/pain in my calf muscles, and first two treatments it had really helped me, and I could walk with much ease.  And the acupuncturist also told me that she can fix the foot drop by targeting S1 / S2 but at that point my neurologist and my wife told me not go further. Acupuncturist was always talking about energy flow and imbalance, which sounded completely out of the world. I think it is worth a try.

      C. Also tried homeopathy for a couple of months, but did not actually see any symptoms improvement

      D. Also taking some ayurveda treatment, which seems to be helping – particularly Brahmi and Ashwagandha.

      For my daily routine, I am doing exercises twice – morning and evening and that really helps keeping my strength. Also helpful are breathing exercise (Pranayama) and some yoga positions and meditation.

      There is still another option of herbal treatment, I am waiting to receive one such herb.

      The fact that there is no cure available for ALS (from medicine science) does not mean that I just wait for the disease to slowly eat me :0) There may be a cure out there which has not been tried or which may help me to improve! So I am being positive and optimistic!

      One more to note: Also engaging mind in learning something new helps building neural network!

      Happy kicking ALS 🙂

       

       

       

       

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