MS Journey #21

………and a small rant

So I’m at the plate…

I’m of Northern European decent – swing and a miss strike one.
I did not drink coffee – swing and miss strike two.
I’m a male – I foul one off (1).
I did not drink red wine – swing and a miss strike three.
I’m out.

Just think about it; the state of MS research says that if I was born and lived in Hawaii (sunny climate – vitamin D), drank lots of coffee, and guzzled red wine I’d be a hyper, tipsy, suntanned, surfing, yogi dude without MS.

When it comes to my situation I’ve always been resigned to the fact that MS would eventually win (win may be the wrong word). And I know that positive thinking gets lots of things accomplished but I’m also pragmatic. However it sort of surprises me that someone has not figured it out yet. In fact it pisses me off because to me it sounds rather easy to solve. We know what happens with MS; the immune system is attacking the myelin that surrounds the nerves.

The thing about MS research is that it is disjointed. Imagine all the money that has been and is being spent on solving this problem. Separate countries, different MS organizations, various Foundations, unconnected research grants, self serving drug companies, etc. etc. But the missing ingredient towards a cure is a universal plan. If all these resources were focused under one project I’d be dancing the Boot Scootin Boogie tonight at the local country bar – yippee i oh ki yay!

A current example of solving a medical problem is the covid vaccine. Just think about it less than two years ago we were hit by a deadly unknown virus. A global coordinated effort solved this problem in rather short order. And now we are vaccinating and this was mainly because of focusing on the solution, coordination of resources, and money. Imagine if other medical issues were approached like that.

Currently, in my opinion, there is no organized global focus on solving MS. I recognize that it’s easy for me, as an outsider, to say this. And I’m not a fan of those who don’t know what’s happening, as in me, complaining. But I do have a background in managing projects big and small.

Many projects I’ve been involved in had no solution before we started. We just knew the goal. It’s my experience when you bring knowledgeable people together, a goal, money, a coordinated approach, and focus you can achieve anything. You may think that I’m oversimplifying but a project is a project is a project. If solving MS were treated as simply as a project it will be solved relatively quickly.

I served on the board of the MS Society of Manitoba where my focus was on services that the Society provided and then when I moved to British Columbia I joined the MS Board and had a time-induced-epiphany. I realized that most if not all money raised should be focused on finding a cure. If you think about it, that sounds callus but if you solve the problem then eventually you don’t need anything else it all goes away.

I live in a country where medical expenses are a shared process and as a Canadian I’m proud that is our philosophy. We also have a medical system that focuses on prevention. If you can prevent an illness from happening then you don’t have to fix it. Imagine the money you would save if you did not have to treat MS. I realize that I just boiled this down to money but that is only part of the equation but that saved money can be used to solve something else. A cycle that would benefit every single person on the planet.

I’ve evolved in my thinking about MS and where our focus should be. I started as a volunteer doing administrative work. Then became a member of the peer support program then a friendly visitor. These are service programs that the MS Society ran and funded. I then joined the Manitoba board and participated in providing housing for people whom needed assisted living. My focus was on the service side of MS.

I moved to BC and got involved with the BC & Yukon Board and my thinking evolved towards focusing on a cure. It wasn’t being on the BC board that changed my thought processes, it was just time. It’s been a very long time.

I’ve had Multiple Sclerosis for 25 years and there is still no cure. In today’s world I think that is unacceptable. I wish I could have done more and saying that could be considered as a metaphor or even a dream. Just think if it goes another 25 years.

Be safe

(1) Women are three times more likely to get MS than men.