Speaking for myself only (I don't now, nor will I ever claim to speak for anyone else), hearing someone say “Oh I know someone with MS and they are totally fine.” is one of the worst things someone can say to me. It ranks right up there with “you look fine!” and is a very quick way to get me to disconnect from the conversation. Although, to be fair, I sometimes don't even feel comfortable talking to my wife or doctor about this stuff. So, disconnecting from the conversation is a pretty easy thing to do. And I do it often. Something to work on.
What is MS?
First things first, many people don't know what MS is. So, let's remedy that. Multiple sclerosis (MS) is a potentially disabling disease that affects the brain and spinal cord (central nervous system). In MS, the immune system mistakenly attacks (an auto-immune disease) the protective sheath (called myelin) covering nerve fibers. This attack disrupts communication between your brain and the rest of your body. The lesions left by this attack can be found in the brain and down the entire length of the spine.
Symptoms: The symptoms can vary widely, and there are many, but here are some common ones:
Numbness or weakness in limbs (usually on one side of the body).
This was one of my first symptoms before I was diagnosed. My doctor at the time thought that I was having a stroke.
Tingling or electric-shock sensations during certain neck movements.
This was THE first symptom I had. We were on a cruise. It was weird.
Coordination problems, unsteady gait, or difficulty walking.
Yep.
Vision issues, such as partial or complete loss of vision (often in one eye).
Thankfully, no. I don't have vision issues.
Fatigue, slurred speech, and mood disturbances.
Am I moody? Nah, not me. Never. Lies, you bet I am. At the snap of a finger I can just be in a foul mood. It's quite obnoxious, just ask my wife.
MS is unique to the individual and no two are the same. Yes, someone else with MS may have very similar symptoms but chances are I am the only person with this specific symptomology.
Yes, there are people with MS that have next to next to nothing to deal with. On the other hand, there are many out there that can't function without assistance, whether that's a caregiver or medical devices.
Where am I?
Since I was diagnosed back in 2019 I've settled somewhere in the middle. I can live a mostly normal life with minimal intervention. Hopefully with the help of science and medicine, I will stay that way.
When you have Multiple Sclerosis today, there are a LOT more options available to you for treatment than there were 20 years ago. MS is still a mysterious disease with no cure but that time will come. With all the research breakthroughs that have happened over the last 5-10 years I hope that time is coming soon.
What does my MS look like?
Luckily, my symptoms are pretty mild on most days. For the most part I only have three things that are constant, my left arm goes numb every night and is significantly weaker than my right arm, my balance is WAY out of whack, and I lose most of the function of my left leg if I'm walking for an extended period. I walk with a cane at all times now. It took me a minute to get used to that.
Thanks to science and some brilliant people there is now such a thing as "bionic clothing" that helps keep my leg working. The CIONIC Neural Sleeve is worn much like an athletic sleeve and sends electrical signals to muscles in my leg at the right moment, allowing me to walk and do things that normally I couldn't do. Sometimes even run for very brief moments.
The Neural Sleeve truly is a life changing experience. With the sleeve on I am able to mow the lawn, run errands and enjoy life all without using a cane. It's pretty great.
My leg issues are my biggest concern and most of the time that is managed well thanks to sweet, sweet engineering. My balance can sometimes be a huge crutch, and while there are some over the counter medicines that help a bit but for the most part, it's always there. My left arm? I've gotten used to it.
How do I treat MS?
There are many treatment options for MS available today. Some oral, some injection and some infusion. Each of them has their pros and cons but the goal is simple, reduce relapses from occurring and halt the progression of the disease.
My doctor and I chose to attack it using a twice a year infusion called Ocrevus. On the upside, I haven't had any new lesions in the last 3 years. The downside? My immune system is pretty weak. The medication wipes out the b-cells that attack the myelin and for a few months my immune system builds back up.
Other than that, there are medications to help treat the symptoms that are present but one of the most important things to do is exercise. For me, legs and core are the most important areas to tackle.
How has my life changed?
So, with all of this stuff going on, can I still have fun and enjoy life? Hell yeah I can. Sure, sometimes I have to limit myself but all-in-all, not much has changed.
Do I still go to Disney more often than I should? Yep, that will never change. I just use a scooter when I'm at the parks. We go shooting almost every weekend, it's a great new hobby that we can both do. I can't run anymore, I tried, it doesn't work (hence the new shooting hobby). My wife still runs, when she participates in races, I cheer her on from the sidelines and drink coffee (why are they always so early!?)
Listen, if there's one thing I've learned from all of this, it's that you can't sweat the things you can't control. Things will always happen whether you plan for them or not. If life decides to throw a wrench in my day by messing with my balance, I don't get mad, I just do what I can and ask for assistance if necessary (still working on that part).
So. Not that you asked but there's the story of me.
Till next time,
Joe
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