I haven't been a regular blog writer this summer, to be sure! I guess the teacher in me still sees the natural need for a break? Sounds like a very nicely worded excuse!
Anyway, I was a principal and district office administrator, so I had a fairly conventional vacation schedule (very little :) the last 20 years of my career as a manager.
On the brain disease front, I am still working with our MDS (movement disorder specialist, neurologist) at the medical clinic to get a very specific diagnosis. I continue to be considered, as I have been for 11 years, as having Parkinson's Plus, with MSA, PSP and CBD all showing symptoms in my case. (Multiple System Atrophy, Progressive Supranuclear Palsy and Corticobasal Ganglionic Degeneration).
CBD is often referred to as CBS (Corticobasal Syndrome) during life and confirmed as a CBD after death. CBS is under the umbrella of Parkinson's Plus, and more specifically, one of the Fronto Temporal Dementia's (FTD). There are several categories under FTD, including PSP, CBS and Primary Progressive Aphasia (predominantly a severe language issue).
In my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER, I discussed CBD, MSA and PSP, knowing that I had the potential for being defined has having one of the three. I didn't know that 8 years after publishing that book that my diagnosis would be possibly redefined-- well that isn't the best way to express it--
further defined. My neurologist way back when said it was "so much more than Parkinson's Disease," and that was in 2006. He thought that Shy Drager or PSP were likely, and later landed on Shy Drager and more specifically, Striatonigral Degeneration. Then, in 2012, I had brain surgery and Deep Brain Stimulators were inserted in my brain to block faulty signals causing walking and shaking/jerking issues.
I have had a lot of benefit from the DBS system I have in my brain in two areas and also the generator place in my chest, connected to cables that send the electrical stimulation to the movement center of my brain. Not many on this earth with Parkinson's Plus have had DBS, so I feel pretty special!
Now, with an outstanding Movement Disorder Specialist working with us, I have had a DAT scan which had very noticeable results
confirming that I have a Parkinson's Plus Syndrome. Now, our MDS has ordered a PET, which will use radioactive isotope to track metabolism in my brain to determine the type of protein damage I have. The proteins in MSA (alpha synuclein) and PSP or CBD (tau) clump (MSA) or tangle (PSP, CBD). The aggregation of these proteins causes brain degeneration and is incurable and irreversible. Attempts are being made through research to develop methods that are hoped to recognize these degenerative diseases early and possibly arrest them in their progression, or even just slow them down. Cures are a long way off, but we are not out of the fight because we care about future generations who could develop the same type of conditions.
What I have is not genetic and is not communicable. It is a disease that begins spontaneously or sporadically. It is possibly caused by toxins in the environment, including workplace or dwelling. The domino effect of the proteins folding brings about the loss of neurons that provide for the function of the body: everything from blood pressure regulation, breathing control, swallowing, eliminating, eye movements and gross motor function, to name several but not all of the disabling affects.
I have lost abilities, and will continue to decline, but I am still here and loving this life! There is so much going on and I have so much hope and enthusiasm for my family, faith and music. I have so much I want to accomplish each and every day.
I will post after the PET Scan to share what might be learned about the effects these degenerative processes have brought. I end with a scripture reference that once was the motto of my Christian band I played in with John Moffett and Dale Samuelson, "
Changing Heart":
2 Corinthians 4:16-18 New International Version (NIV). Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
-- Patient-Online
