This topic contains 11 replies, has 4 voices, and was last updated by  Faye Flatt 6 months ago.

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  • #11210
     MD forums Moderator 
    Participant

    There are different types of muscular dystrophy and the severity of the condition can vary greatly from one patient to another. There are many MD patients who cannot partake in physical exercise, but for others, engaging in an exercise routine can help improve muscle tone and increase overall fitness and health. However, you should always consult your doctor before beginning any new exercise regimen and be sure to take caution, slowly easing yourself into a routine to ensure you don’t injure yourself or damage any muscles.

    Cick here to learn about the three different types of exercise that patients with slowly progressing muscular dystrophy might consider taking up.

    Is exercise part of your daily routine? Why or why not? Do you enjoy staying active?

  • #11256
     Faye Flatt 
    Participant

    First of all … thank you for this forum!!  A year or so ago I actually tried to start a similar site because I was unable to find anything specific to MD and although there are groups in facebook, not everyone has social media.  I have FSH and 5 or so years ago started going to the gym when I found I was unable to stand on one foot long enough to take my sock off.  Also at the time I was only able to raise my arms to shoulder height.  With the help of a trainer who took an interest in the disease, and a lot of hard consistent work, I have improved my overall strength, core and stamina.

    Primarily I work with light weights … up to 8-10 lbs free weights as well as resistance bands, but do use weight machines as well.  I find resistance bands are great because I can control the level of intensity and there is no risk of injury.  With the assistance of my trainer, I have come up with quite a few modifications for ‘normal’ exercises, which allows me to isolate the compromised muscles.  For example – a regular shoulder press involves lifting free weights straight up overhead from either a standing or sitting position.  Doing this is difficult for me so rather than sit or stand, I lay on my back with my legs on a yoga ball to remove the curve in the small of my back, then with small 2 or 3 lbs weights I extend my arms from my shoulders parallel to the floor then back again to my shoulders.  By laying on the floor, much of the gravitational resistance is removed and because the arms and weights are only about 2″ off the floor, the risk of injury is lessened and the opportunity for rest is available if needed.

  • #11260
     Tracy Barhite 
    Participant

    I walk everyday usually for at least 30 minutes.  I cannot lift much with  my hand’s, those muscles are very weak.  I think any kind of movement for people with MD is good.

    • #11780

      Hi Faye! When you were looking for a trainer, what were some things that you wanted? How did you find them and once you did what did you talk about before starting your work out? Did they have prior knowledge of your MD?

      • #11803
         Faye Flatt 
        Participant

        Where I live there isn’t many choices for personal trainers and the majority of them are focused on weight loss and bulking up.  I had a friend that has some medical issues that told me about the one he was working with.   I emailed links for information to her beforehand then we met and she did an assessment to see what my restrictions were.  I told her my limitations reaching overhead, how poor my balance was and that I wanted to gain overall strength so I wouldn’t end up in a wheelchair at 72 like my mother did.  At the end of our first meeting I asked when we could start and her reply caught me off guard but I respected it when she said “I will only take you on as a client if I think I can help you and I haven’t figured that out yet”.  She contacted me about a week later and when we met again it was clear she had done her research!  She knew which  muscles where compromised and how to work them without engaging others that would cover for the compromised ones and I respect that she isn’t egotistical but watches and listens when I show her an exercise that I have modified … if it works we incorporate it into my routine and if it doesn’t we either tweek it so it does or drop it.

      • #11808
         Faye Flatt 
        Participant

        Hi Dani … I’m not sure why but I am unable to reply directly on our conversation.  I clicked the link in the notification email, which brought me to our original conversation but your last post wasn’t on that page.  I had to click on your profile to see it but then I wasn’t able to reply (even though the reply button was there).

        Yes Connee (my trainer) is amazing and I feel very blessed to have her.  She even continued to work with me as she was going through her own medical issues when diagnosed with borderline stage 4 uterine cancer.  She is a beast and beat it!  That was in the past year, then she took 3 months off to go south and is back so tonight is my first session back with her.  Accountability is a huge issue!

        When I started with her I told her my motivation was mobility but over the first 3 years I lost weight as well but I didn’t tell her I was keeping track lol.  I had one year where I only lost 3 lbs and I realized my focus had evolved and I wanted to continue ‘downsizing’.  Ironically it was that afternoon when I was watching Dr Oz, and he had Dr Michael Mosley as a guest talking about an eating strategy he developed called 5:2 Intermittent Fasting. The concept is simple… consume 500 calories a day two days a week and the other five days eat normally.  I started it immediately and lost another 45 lbs for a total of 85.  Weird thing is that I didn’t look overweight because I was proportionate and my body structure hasn’t changed other than it is smaller.  The wonderful thing about 5:2 is that it isn’t a prolonged reduced calorie intake so it doesn’t adversely affect the body and screw up the metabolism, and it is sustainable.  If I travel and gain a couple lbs, I do a fast day or two that week I get home and it usually is gone within a couple weeks.  It balances things out.

  • #11263
     Tracy Barhite 
    Participant

    I was diagnosed in 2015 with Distal Muscular Dystrophy.   Last year  (June of 2018) my doctor did a muscle biopsy and changed my diagnosis to  Inclusion Body Myositis.   I guess it’s under myotonic Dystrophy.   However I know mine is a little different because it’s autoimmune related.

    • #11781

      Tracy, when you say autoimmune related, what does that mean? How does that affect your MD, if you don’t mind sharing?

  • #11265
     Tracy Barhite 
    Participant

    I don’t always walk for 30 minutes all at once.   Sometimes it’s only 15 or 20 minutes at a time.   I listen to my body.  I take Methotrexate it helps with the fatigue,  but not with strength or muscle loss.   I too wish I had been a lot more active early on when first diagnosed.   I feel for you having gotten this disease at such a young age.   What type of MD do you have?

    • #11269
       Faye Flatt 
      Participant

      Hi Tracy .. I have Facioscapulohumeral muscular dystrophy (FSH) it is inherited and affects the skeletal muscles of the face, scapula, and upper arms but many people find their legs are affected as well, specifically the muscles around the hips and many suffer from drop foot too.  I used to have some drop foot but I strengthen my ankle with a resistance band and find I don’t trip much  anymore, unless I am really tired.

      You don’t have to walk 30 minutes at a time, any type of moving is great and unlike normal people who exercise to the point of fatigue, we need to avoid that.  I started taking collegan a year or so ago as a boost for my joints but it is supposed to help with muscles as well.

    • #11779

      Hi Tracy, Methotrexate, you said it helps with fatigue? Have you noticed any side effects?

  • #11268
     Tracy Barhite 
    Participant

    I totally agree with you!   Don’t stop moving, even for a day!   Never give up!

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