I'm 26, male, and have Muscular Dystrophy

bubbabushido
bubbabushido Posts: 4
in Introduce Yourself
People say that our disabilities shouldn't define us, but frankly, I disagree. My disease will cause paralysis, and failure of major muscle groups, but I will never be considered a quad or paraplegic, since I will retain my sense of touch. I'm unfit to care for myself, a wife, or kids. I live with my parents, and receive far less than the poverty level since my work contribution from age 15 to 22 is considered insufficient to afford me an independent life.

Specifically, I was born with Spinal Muscle Atrophy type 3, a slow, but constant atrophy of all voluntary muscle due to a mutation which causes improper nervous system communication. This disorder is genetic, affecting anywhere from about 1/6000 to 1/12000 out of a given population, and stems from a lack of essential survival motor neurons. The more severe forms of this disorder are deadly due to respiratory weakness, most people with type 3 make it to adulthood.

Spinal Muscle Atrophy is the number 2 genetic killer of infants, but is 'preventable' (via abortion,) due to now common pre-natal testing.

My doctor says no resistance workouts, and sneers at the idea of calisthenics doing anything for me. I was, at one time, a fit individual (150 lbs,) but have put on quite a bit of weight through my own apathy and with some help from heavy psych meds.

I have lost 28 lbs since January 2014, using no computer aid. I have since plateaued at 242, but am trying to reach 160.

I broke my ankle 3 weeks ago and have taken this time to get my priorities straight:

1) Heal my ankle (bone has shifted due to stubbornness)
2) Get fit
3) Get a job (VR or Goodwill)
4) Write a book

I am considering an Alternating Daily Fast, as I am now making my way into a 'manual' powered wheelchair and my caloric requirements are decreasing substantially. According to recent studies, fasting may prove particularly harmful to my system, but frankly, I didn't expect to be walking all the way to 26, and I need the weight loss more than I need my legs.

I hope to learn more about ADF and to provide an example of it's effects on individuals with neuro-muscular disorders. You can call me a guinea pig, but I hope to be a thin one.

Replies

  • mostlyrawvegan
    mostlyrawvegan Posts: 14
    I wish you the best of luck! I also think that fasting could do more harm than good. If you want to read an interesting book on nutrition try reading the china study. It definitely makes you think about how we eat. Feel free to friend me if you need some support.
  • bubbabushido
    bubbabushido Posts: 4
    Thanks for the tip, I will check it out.

    I've decided to do ADF, but instead of true fasting, consume 1500 then 500 alternating daily. on my 500 days I will consume as much protein as possible along with raw fruit and vegetables.
  • mostlyrawvegan
    mostlyrawvegan Posts: 14
    Good luck I hope it works for you.
  • BenneiK
    BenneiK Posts: 4 Member
    Good luck to you in your endeavors...! It definitely is a challenging disease to have on a journey to weight loss.. I have no advice for you, but I do wish you the best of luck.....
  • LITtlerMeCO
    LITtlerMeCO Posts: 130 Member
    Are you planning on writing an autobiography/memoir or fiction?
  • MichelleV1990
    MichelleV1990 Posts: 806 Member
    Wishing you well on your weight loss journey, and your other endeavors. I have a milder form of Muscular Dystrophy known as Charcot-Marie-Tooth Disease, which affects my hands, arms, legs, and feet. It's a slow progression and I've been wearing foot braces since my mid-40's. I know the struggle of trying to stay fit when extra challenges are involved. Feel free to friend me if you wish!
  • unesemainedecruaute
    unesemainedecruaute Posts: 54 Member
    Hi! First, facts:
    + Fasting with low calorie eating is not going to do the trick. Your body needs to be fasted of nutrients to start the processes associated with fasting.
    + There's no need to go one day on fasting. I don't remember the minimum, but it's between 14 to 16 hs that you'll already see results.
    + Fasting has a GREAT psychological role, and I wouldn't recommend it for anyone that will work or live the most of the day at his/her home.

    Second, suggestions:
    + I would suggest to find not a diet, but a NUTRITION plan that you can follow all your life, and eat between 10 to 20% below what you need (what is called a calorie deficit). That's all you need to lose weight.
    + I would also hardly suggest to make that plan (and the weight loosing) NOT the most important thing on your life. Put some objectives above it, like finding a job or whatever you like. It's not that it is not important, but it will make it much (much) easier to follow if you take it on background.

    Third, questions:
    + I'm totally unaware of your condition and its limits. That being said, I do know that strength training is primarily focused on the conditioning of the CNS, since you exercise (and improve) not so much your muscles, but the connection between your brain and your motor units. Have your doctor told you anything about this?

    Fourth and finally: We are not what we have or lack. It is, instead, what we make of it, what define us.

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