13 thoughts on “Juggling MS, family and work: Priorities and possibilities

  1. What an amazing insight. My only knowledge of MS previously had been what I learned from Jed Bartlett’s condition on the West Wing (fictional US President – great show!). This sheds a whole new light. I am inspired by your incredible discipline and the amazing support of your wife. Yes Mike, as your children get older and more independent, life can get less exhausting. Something I have learned to help with the juggle of family and work life, is to make friends with your children’s friends’ parents – carpooling, exchanging play dates etc can miraculously give you valuable time. Thank you for sharing.

    1. Hi Mike’
      1st off, thanks for sharing your MS challenges with me/us.
      I’m 52 & have MS also.
      Since the day of 9/11 in fact.
      I have 3 kids who are 24, 22 & 19; 2 girls & a boy.
      Many of your concerns living with this shit I share.
      I suppose with nearly 15 years ‘Experience’ with this thing, it’d make me a pseudo ‘expert’ as such?
      I try every single waking moment to try & put this thing out of my life, but it sneaks its way back in.
      For years now, I’ve been of the mind, MS is hereditary; it has to be, you’re the 8th person I’ve ‘met’ who has a family member with MS.
      Science is one thing, but you simply say this is coincidental; that’s bullsh*t

      Next week will mark our 31st Wedding Anniversary; amazing, eh?

      I can add so much on this topic, but I’m boring myself!
      Hey, all the best,
      Tony Rooney

  2. I’m so glad you’re not taking any of the so-called disease-modifying drugs! The only ones that have been around “long-term” (since the mid-’90’s) have been shown not to work in delaying disability and the newer ones are following a similar “autoimmune” theory that has never been proven!

    I was diagnosed in 1990. I have no children but had to stop working in 1992 following a miscarriage that seemed to make my MS worse. I have been told by a genetics expert that MS is not directly “inherited” but there may be a genetic factor. I worry about my niece (who is now 24) because her mother (my brother’s ex-wife) also has MS as did her biological mother, so 2 generations combined with me on her father’s side…

    I became secondary/progressive before any of the drugs came on the market so have never “qualified” for any of them–thank goodness. I was 6.5 EDSS (disability scale) until I had venoplasty for CCSVI (Chronic CerebroSpinal Venous Insufficiency) in 2011 and became a 4–there is hope beyond drugs! Keep up the healthy lifestyle!

  3. I am in exactly the same boat as you, although I am a migrant from Africa. I could not have said what you said better myself. MS is an individual challenge, but the side effects can be overcome by careful planning and sticking to that plan. Thank you for a great insight.

  4. Thank you very much for your journey of life with MS. I do believe there is a hereditary factor, particularly, a predisposition in families. My son was diagnosed with MS at the age of 21 (6 years ago). My sister was diagnosed more than 20 years ago. Both had mononucleosis in their teens.
    I wish you and your family all the best.

  5. I too believe there is a pre-disposition, I has diagnosed in 2013′ I was 45′ my brother was diagnosed when he was 32 and my sister was 17, we all have relapsing remitting and we all have children, let’s hope they find a cure.

  6. Hi,

    I publish an Australian website on disability news and opinion at:
    https://mydisabilitymatters.com.au

    and was wondering if it might be okay to republish this article and any other relevant ones on our website, with appropriate credit and a link back of course.

    It would help spread your work and gain a wider audience for you.

    Hope we can work together and I am quite happy to publish other articles you may have written that aren’t on your blog also.

    Thanks,
    Dale.

  7. Pingback: Lady with MS
  8. Hi Mike\
    \I was with your Mum at our superb MS exercise class today. She missed last one due to her regular jaunt to Oz – good on her! (My poor long-suffering husband finds me too much of a liability to take on long-haul flights nowadays…! But I have been Down Under 5 times so am not complaining. Great article – good luck to all the family.

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