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Part-time Wheelchair Use

I felt it was very important to address part-time wheelchair use to help raise awareness for this need in our society.

My primary diagnosis at this point is Mollaret’s Meningitis (recurrent viral meningitis).  I believe my multiple brain injuries as a child made me more susceptible to having more serious brain problems later in life.  I believe that contracting viral meningintis at age 21, has slowly over time progressed to the situation I find myself in today.  There is promising research into this being an autoimmune disease, and possible genetic mutations.

I have been having a rough time lately.  My legs have been starting to refuse to work making it hard for me to even walk to the restroom sometimes.  I try to do a little work pulling weeds, or watering plants when I can, but that a lot of times triggers issues.  Tonight I randomly started having my head jerk around ending in me slamming my head into a wall and becoming paralyzed.  Life with Mollaret’s Meningitis can be very rough.

Because of the random leg weakness, quick onset temporary paralysis, and seizures, we have found it best to use my wheelchair when we are out and about most times.  If we are heading straight from the handicap spot to an office with seating, then sometimes it is more of a hassle than it is worth.  When we want to go on a walk, I go in the chair.  My wife can’t carry me even a few blocks back to the house if needed, so the chair it is.

When I was going to physical therapy, where walking back and forth a few times caused seizures, my therapist requested I come in my chair so we made sure I was safe while we were trying to find exercises I might be able to do.  That meant using the lift on the transport van, and all the hassle that can go with that. When I got home I would park it in the garage and walk into the house.

This happens a lot where I might be doing some work in the yard and then get into my wheelchair to get the mail, or go on our walks.  A lot of neighbors see this happening and I can tell they are wondering if I really need a wheelchair.  These are looks I get a lot being a 40 year old man in a wheelchair.  On the outside I look like a fairly healthy person.  The problem is, that the other day I walked to the mailbox to get the mail, so I could actually get out of the house and do something, and on the way back I started getting weak legs and almost didn’t make it back into the house.

My disease makes it so it is very hard most days to get around.  My goal is to do as much as I can so I can try and keep as much muscle mass as I can before I can’t do anything anymore.  I use the wheelchair to go longer distances so I can conserve the little energy I have and hopefully limit the chance of having more seizures or paralysis.

So the next time you see someone in the wheelchair that doesn’t look like the typical wheelchair user, please don’t judge them because you don’t know what they are dealing with in their life.

Life’s Hard; Be Kind