"Have you peed your pants yet? Cause that's what's next."

My Experience

by Diane McNamara, aka angel00113

  When I was twenty-one my finger tips were numb as well as loss of balance when fatigued. At the time I had no clue what was happening to my body. I wasn't concerned at the time. [the immortal young] I was living my life to the best of my ability.

  A few years went by and symptoms worsened. I went to so many doctors that I can't for the life of me remember them all. They kept asking me if I had an inner ear infection then started asking if anyone in my family had multiple sclerosis. Well, I had never known of any uncles, aunts, grandparents or nieces, nephews; only my dad, mom and brother. Believe me, I've searched for any living relative far and wide, but to no avail.

  My left leg was getting weaker and at one point it gave out. I was taken to a local hospital and had iv steroid for a day and voila, back to my walking. It wasn't bad until my balance worsened to the point where I needed crutches; I cried when I saw them. The Beth Israel Hospital had an appointment open; I did not know what to expect.

  I cannot remember the exact year that I was diagnosed, but I'll never forget the day. I went to the "doctor", who examined me and after what felt like forever, he said, "You have MS“. By the time the nineties came around I was fitted for my first wheelchair. I held my tears. I wasn't going to give him the satisfaction of watching me cry so I held my tears until the elevators took me to a friend's office, and there I broke down.

  It's been a long ride, so bear with me as I can't remember everything.

  I do remember the day my walking days ended. After long consideration and reading, I tried a trial drug called "cytoxan". One sentence which read, "No one has been made worse by this treatment" made my decision. Looking at the nurses and doctors faces told me things weren't going well. Unfortunately, I was right. When entering the hospital I was walking, but not when I left.

  My husband bought me a wig for $100 because I had lost all of my hair. I felt so anxious around people but my husband and I had young boys on baseball teams and was obligated to watch them play. I really loved seeing them on the baseball and soccer fields and eventually began forgetting the wig and got into the games. My sons were so outstanding at baseball and especially soccer that I do believe everyone wasn't looking at me. Until those men left and again, I cried.

  My husband bought me a dining room chair on wheels [$80.00] and I proceeded to cook, clean and just about everything I was able. My day started with a shower, then slid my way to the bedroom to get dressed. By then I slid to the top of the stairs and made my way down the stairs on my bottom.

  Early during my disease I was strong enough to get myself onto a chair, grab my walker and walk to the kitchen where I got onto a regular kitchen chair, then slid onto the chair on wheels.

  Eventually I had my car transmission changed to an accessible one, in which I changed gears with my right hand and steered with my left . Failing the drivers' test the first time in Melrose, I took it a second time in Revere, this time passing.

  This was a fun time for me, driving my children to school, taking my mom shopping and basically driving every chance I had. One day with my daughter in the car I decided there would be no more driving. "Ataxia" the doctors called it had taken it's toll.

  Ten years later, here I sit telling my story. Nowadays there's not much time for anything except writing in "wordpage", which contains a diary, this article, my book and most importantly my access to MSWorld. This particular website gives me a sense of belonging because, after all, everyone who belongs to this site all belong to each other.

I must first thank my husband who "walked" with me down this road through all of it's bumps and twists, my twenty-six year old son who taught me everything I know about the computer world, my youngest son for not letting me feel sorry for myself and I thank him and my oldest son and daughter for their love and understanding. The most they can do for me now is to join the living.

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