It has been difficult to understand, let alone explain to others. So many family, friends, contacts and fellow patients are following my story. I started writing this blog in 2006 and though I took this site down for a year or two, it is out of that same effort that my pursuit for truth continues.
I want to clarify: it has always been clear since February 2006 that I have an Atypical Parkinsonian Disorder. This much has never been in question. My original Neurologist made it clear that he thought I had "So much more than Parkinson's Disease" in 2006. He saw it as Progressive Supranuclear Palsy or Shy Drager ( the synonymous term is Multiple System Atrophy). Now, years down the road the condition has progressed considerably, but my overall strength and heartiness has sustained me. Well, I am still here, right?
When our great neurologist left our clinic, I was fortunate to be referred by my Primary Care Doctor to a Movement Disorder Specialist in a nearby community. Since, I have been seeing her every 5-6 weeks. She has conducted a number of essential tests, including a PET Scan, which showed that I had cell degeneration bilaterally in the basal ganglia, the movement center of the brain. I have also had a DAT Scan, which indicated degenerative effects in the Frontotemporal area on both the left and right sides of my brain.
To date, my diagnosis continues to include Multiple System Atrophy with Parkinsonism symptoms. This means I share movement and balance symptoms that Parkinson's Disease patients have and yet so much more. My eye movements are more and more limited, with my ability to move them up and down and side to side becoming gradually more restricted. I also have autonomic dysfunction which results from a loss of neurons in the areas of the brain that govern the automatic functions of our bodies: Urinary, Digestion, Bowel, Swallowing, Breathing, Blood Pressure, Body Temperature and Heart Rate. These are experienced in a much more severe manner than in typical Parkinson's, although no Parkinson's patient escapes these problems -- the difference is it occurs in the first few years of Multiple System Atrophy and may occur after a decade or more in P.D.
I have had changes in medications to determine what side effects might be influential in my symptoms and have also had blood tests to check for genetic mutations or inherited diseases. A scope was put up through my nose and down my throat and resulted in the realization that I have a condition gradually paralyzing my vocal chords, which threatens my ability to breath in the long run. I am aware of the potential of a tracheostomy procedure to make an airway below my vocal box in order to prevent aspiration pneumonia and also to head off the real possibility of breathing obstruction.
I am grateful that I have a committed top neurologist who specializes in patients with rare neurodegenerative diseases, along with Parkinson's Disease. We will be seeing her again soon and hope to get a sharper focus on what is bringing about these deadly physical threats to my longevity and have stolen my life from me-- career, driving, social life and freedom to walk around in the world. It isn't that I can't accept the reality, it is more that to have a definitive analysis would be a gift bringing peace to my soul and spirit. My dear family would know of what I am referring to and share my desire for such clarity. -- Patient-Online
But He knows the way that I take; when He has tested me, I will come forth as gold. -- Job 23:10 (NIV)