Multiple Sclerosis affects my central nervous system, the system that controls everything my body does. It can impact any part, though there are more commonly affected areas. It’s pretty basic to see that my MS can impact just about anything I do.
Some of the effects of my MS are severe: vision symptoms like nystagmus (jerky eye movements) & internuclear ophthalmoplegia (lack of coordination between the two eyes) are some of the “sexier” symptoms I’ve battled. Sexy may not be the word, maybe I should say they are some of the symptoms that are easier to talk about to people who aren’t familiar with MS. More often, the symptoms most people associate with my MS are the motor symptoms. The sensory loss in my hands and feet, with the occasional spasm. The footdrop, stumbling or falling. These are the things that leave obvious signs like bandages, patches or scars.
Then there are the other symptoms of my MS. The symptoms where, if you see them, often the reaction is not
· “I wonder what is wrong with his arm/hand/leg/eye”, or
· “his MS is acting up” or
· “he’s not doing well”
Instead, these are the symptoms where the reaction to the casual observer is more of shock, humor, or disgust.
So, let me clear the air for anyone who has experienced some of these moments around me.
I drool sometimes. Often I don’t notice it until I have been drooling for a bit, and usually by that time there is a string of drool on my chin or shirt. My daughter is now 18 months old and I am proud to say that (most of the time) she drools more than I do. She’s getting better; I seem to be getting worse.
I slur. In the middle of the day at work this can often go unnoticed, or brushed off. There is the occasional look of “what the heck is the matter with him?” Later at night, at a restaurant, or at any social activity the thought is usually different. “He’s drunk” is a common reaction. Mix the drool with a little slurring and most people think “I am plastered.”
I have bladder control problems. I run to the bathroom…a lot . I have a continuous fear of peeing my pants. This may be the most embarrassing symptom and it is definitely the one that I try hardest to control. Sometimes I succeed and other times I fail. We’re going to start potty training for our daughter next week – I’m jealous that she’ll get it under control whereas I probably will not.
The worst time can be the perfect storm of these symptoms. So if you see me out somewhere and I am slurring a bit, with a little drool stain on my shirt and a slight pee-stain on my slacks, let me apologize and explain in advance:
I’m not drunk. I have MS.
I do these silly things often. Some days are better than others. It is more than a little inconvenient and often embarrassing. I try to manage these symptoms but if I fail at times, my options are pretty limited. I just move on. I don’t expect much sympathy and I rarely apologize. I just want people to know and maybe understand a little bit better.
…if you see me just remember that a little humor is still appreciated (“Hey, Kevin! You and your daughter are both drooling again….I think you got her beat this round!”).
Kevin Byrne - Portland, OR