My dad had MS.
When he died, aged 35, it wasn’t from MS (which he had, PPMS), it was from TB. His immune system was shot.
From what I’ve been told, he was a go-getting, cheeky, funny bloke with his whole life ahead of him.
Until, in the 1970’s, MS struck. Or, ‘creeping paralysis’, as it was known back then.
He was tossed in ice-cold baths to test his temperature tolerance. He was given a wooden stick and sent home.
He died and times changed.
Fast forward to 2011 and I now faced a future with MS.
We have a myriad of DMD’s. Support from MS nurses. We are lucky.
I remember, when we had to write about our parents in primary school, I would write, My Dad Is Dead and MS Killed Him’.
For that, I was called up to the teacher’s desk each year, to explain my single-parenthood.
I spoke to my mum before I wrote this. I was worried that by referring to my dad in my book, I was being mawkish or overly-sentimental.
She disagreed.
So. I have MS. I wish my dad had lived long enough to see me now, and everything all of us who live with MS today are achieving.
“tossed in ice-cold baths to test his temperature tolerance”
what!!! wth would that help?!? ugh
when I read and hear of people with MS complaining all the time about how there needs to be a cure and how things never change. They need to stop and listen to people like you, who have dealt with a time when NONE of the options we have now were around and how bad things were and could still be.
Well said!! Yup, a lot has changed since my dad. Thank goodness!
X
A close friend from school was hit with extremely aggressive MS in 1988 ( she was in her 3rd year of a physiotherapy degree. She kept having debilitating relapse after relapse and never got back to more than 50% recovery each time. Even then there was very little to help her and within 5-6 years she was bedridden and helpless. She died about 8 years ago now and I am great full every day that we are living in a time where we have more options and more help available. I remember when she came home in the uni holidays while recovering and explained about her early symptoms (tingling in arms etc,) and I can clearly remember thinking I get that too but dismissing it as hyperchondria. 4-5 years later I am diagnosed with MS. Freaked me out for a while. Still cry about it sometimes when I remember how quickly she lost her ability to live her life and at such a young age.
That’s so sad. Truly. This post came about as I forgot to mention my dad in my book. I was wary of being too sentimental, until I took advice from my closest family.
So now, the page where I dedicate the book to Christopher, The Teenage, I also write, In memory of… (my dad).
x
Back in 2000 – 2002 (when I first noticed symptoms of MS), I was frustrated that no-one seemed to know what was wrong with me, then that there was nothing they could do!
By the end of 2004, we had an MS nurse. In 2005, I started AVONEX, then in 2011 TYSABRI and now there are all the oral DMDs and so there’s been lots of progress even within the last 10-15 years.
Let’s hope it continues and treatment options are developed for progressive MS too!
Absolutely! We’re living in a good age, compared to the 1970’s. And so true, I really hope there’s more treatment options for PPMSers very soon.
X
🙁 Tough post to write I’m sure. I’m sure he would be really proud of you and all the advocating you do for people with MS. Times are very different now, thank goodness. But not different enough… Lets keep pushing and hopefully our kids won’t have to write a post like that one day.
Be well 🙂
R
I really, really hope so. I was having coffee with a friend who also has MS yesterday and we were talking about how we would feel if one of our children had MS in the future. Not the cheeriest of conversations, but we were convinced that things would be very different. There could even be a cure…
X