I’d like to set the stage for this story by saying I was diagnosed with cerebral palsy around the age of 2 1/2 because I didn’t walk. I scooted everywhere. I eventually learned to walk even though it wasn’t “normal.” I guess you could say I did it my way and it served me well for about 40 years. Then something began to change.
It was subtle at first. I was moving a little slower, I fell more often and some days I found it difficult, if not impossible, to get out of bed at all.
I went to several doctors who had no real explanation for this change, other than to state the obvious: “You have cerebral palsy and you need to learn to live with it.” This went on for six to eight years. It got to the point where I allowed myself three falls a day. After that, I’d put myself to bed no matter what time of day it was.
When I told my doctor about that, she worked diligently to help me. She ultimately found the Movement Disorder Clinic at Vanderbilt. It took 14 months to get in and I must say, that was more than a little disheartening!
However, I was cautiously optimistic and after my first visit, there was no doubt in my mind that I’d finally found people who understood what I was going through and at last would provide a measure of relief!
Initially, they gave me a Botox injection which relaxed the muscles in my feet that had become so stiff, it was nearly impossible to move them. Pretty impressive, I thought, but that was only the beginning!
They also referred me to another doctor at Vanderbilt to discuss a baclofen pump. I was skeptical at first because I had taken that medication before and it didn’t seem to work, but I figured I’d tried everything else so I agreed to meet with them.
I guess you could say I was a guinea pig for Vandy – part of a clinical research study.
For five days, they tested the medication at various locations in my spine and found exactly where it needed to be placed to work the best in my case. So far it is working well with still more hopes for improvement.
And the best part? I mean besides being out of the wheelchair more – it’s not a narcotic.
Don’t get me wrong, I have a long way to go. There’s physical therapy to come, the medicine is being adjusted and I’ve had a few minor issues. Mostly headaches and some nausea, but here’s what you need to know: My pain has been significantly reduced with less medication.
I said it earlier, I’ve been able to get out of the wheelchair safely more than I have in years.
Who knows, maybe one day I’ll even get to live out my dream – to dance with my son at his upcoming wedding!
Jan 30 2019
Jan 30 2019
Jan 16 2019