2 Comments

  1. Jonathan Stone
    May 7, 2018 @ 4:28 am

    Yes I was diagnosed with SCA a year ago I am lucky just hobble find running near impossible and wonder how much development of condition is cos it’s so bleak and depressing which makes people withdraw from the world,tense up and atrophy quicker. I am reluctant Togo there and find your attitude approach and knowledge inspiring. Thanks!

    • Mark Desa
      May 7, 2018 @ 11:13 am

      Hi Jonathan,

      Thanks for your comment. I believe you are correct. Anyone with a major illness tends to withdraw which may make healing more difficult. We are social creatures and our interactions with others go a long way towards keeping our brains healthy. It’s something I struggle with too.

      Another thing I’ve observed is that we (those with rare/chronic illnesses) generally worry and stress about ourselves or our own health – justifiably. But this “survival mode” living is not going to get us anywhere. I’m working on this, but progress is slow.

      Lastly, I would say don’t worry about running. I’m in the same boat as you. I tend to shuffle most of the time and run very rarely (only if absolutely necessary!). Instead, strive for smaller, more realistic goals. Maybe we’ll be running again some day.

      I know it’s easier to say than do, but try taking a different perspective. I know the outlook can be bleak, but well… it depends on who you listen to. Sometimes negativity gets passed off as realism. Someone might say that SCA/Ataxia is not curable. And well, scientifically/medically/technically they may be right. But, there are plenty of people who have overcome other disease/illnesses in opposition to the current scientific stance. I prefer to think that nobody knows if my Ataxia is curable, so I’ll take the stance that it is.

      I hope that helps whatever you’re going through. Keep hope alive, brother.