February 21, 2010

I find I have a pattern. When a new symptom appears, I retreat. To chew upon it, to fume, to worry, to pray and work my way to acceptance. And many times, the symptom disappears as mysteriously as it came. Also it’s hard to know if speech patterns change if you live alone – which means, to me, needing to call people, ask them to visit.

What has become pronounced is more Parkinson-like symptoms. All of a sudden my neck will feel weak, and the head bobbing occurs. Or the trembling in my hands increases (noticed it at Christmas, trying to write notes to my children and grandchildren) or trying to eat and slopping food on various parts of my face or clothing.

What set me back this past week was the stutter/lag of speech on the phone to a stranger. Since I live alone, it’s reasonable to expect it has only been noticed by those with me longer than 10 minutes. But having it happen on a short call scared the heck out of me!

I had major spinal/nerve surgery in August and that is interfering with symptoms. But when my neck became weak, while waiting in the doctor’s office and I couldn’t stop it from shaking, then my shoulder … I knew it was something new.

And it exhausts me. I cannot imagine what those with Parkinson’s go through with their motor skills working non-stop! I’ve slept at least 4 hrs each day just with a wobbly head. or those with 24/7 Dystonia. Or those with ALS who cannot move at all. It’s then I thank God for the symptom that assures me I can still move.

Pray for all of us, but a prayer this week as I see what I call my “Dementia Team”. I’m sorry I retreated for awhile, but I had to run through all the gamut of feelings that each change brings out in me.

We can make others know about us, and our children and grands may not have to travel this path. And, so I pray…

Love, Vicki