MS and Me - The Struggle is Real

Last updated: August 2022

My name is Derek and I have PPMS.

A little about myself

I’m a 40 yr old father of 2 extremely wonderful boys, 4 & 6 yrs old. They are my absolute world and I am cherishing every single moment I have with them right now. I’m still able to walk around right now, so I do as much as I physically can with them. We spend a lot of days in the pool, as water has become my best friend.

It started with back pain

About 3 years ago, I went to a spine specialist because I’ve been dealing with severe back problems for most of my adult life. I figured it was because I was a commercial glazier, and done a lifetime of heavy lifting already. I got an MRI and discovered that not only did I have compressed discs in my L1-L3 and a compression fractured T12 vertebrae, but I also had lesions on my spine. Since then I’ve been for 12 MRIs of my brain and spine, and just had my lumbar puncture about 9 months ago. My brain is growing new lesions, and my spinal column has newer lesions, as well as the old ones, which are growing bigger.

Life after diagnosis

My Neurologist finally diagnosed me as Primary Progressive, and I will be starting Ocrevus infusions in 2 weeks. This has completely thrown my world upside down, and most days I feel like I’m spiraling out of control. My legs are getting weaker by the day and I’m exhausted on the regular. I haven’t slept well in years, so I’ve essentially become a functional zombie.

My support system doesn't seem to fully understand

I feel like the people who are supposed to be my support system, don’t really think that I’m in as bad of condition as I actually am. It’s hard not to feel like a burden, and I’m struggling just as much with my mental health, as I am with my body.

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