I am suspicious of autoimmune diseases with their curiously wide array of symptoms amongst various individuals. Perhaps this umbrella term is masking multiple diagnoses and processes that science hasn’t clarified. How can one disease do so many different things within the body? I was asked to compare a dad and daughters symptoms to discuss the differing disease expressions for two people given the same diagnosis: Parkinson’s.
When Tom (Dad) was diagnosed at 81, he’d always been soft-spoken. As his neck and throat muscles weakened, he became quieter and since these muscles also assist with eating, food became a potential aspiration hazard. His handwriting changed to a shaky version of his already microscopic scrawl. Freezing episodes occurred when walking from one surface type to another (e.g.: carpet to tile) leading to rapid blood pressure drops (known as Autonomic Dysfunction) and fainting. We’d walk in a row: the maroon wheeled walker, Tom plodding stiffly behind and the Plan B wheelchair driven by one of us, ready to grab him as necessary. He never experienced associated pain, nor oddly much of a visible tremor. This is one version of Parkinson’s disease.
At 51, his daughter Joyce’s symptoms began with right foot cramping after a twisting stretch on a colleague’s inversion table, caused a bolt of shooting pain to zip down from right low back to right foot. In the last nine years, involvement has extended to visible cramping and spasticity of her right calf with extension into the entire right side along with a generalized binding of the entire body, especially the torso. At random intervals, the right foot angles outwards and the left big toe stiffly tenses upwards towards the ceiling. Otherwise, she walks and turns smoothly without any of the classic Parkinson’s rigidity or stuttering movements.
These symptoms have built to multi-daily debilitating pain attacks lasting 15 to 45 minutes until the current medication dose can “get on board.” The varieties of discomfort include: a generalized tightening or what she describes as an ace bandage or blood pressure cuff over areas of her body to pulling, ripping, tearing, shredding and burning pain. There have been times wants to amputate her leg off. In the past year, she has been tracking her symptoms every two hours to gather information for her doctors about medication effectiveness and symptom control.
My spouse and I once attended a local conference geared for Parkinson’s patients and family. In the crowd were young folks in wheelchairs, those dealing with rigidity, tremor, spasticity and blunt facial expressions or dementia and all from just one supposed disease. Could a mix of genetics, diverse environmental inputs like chemical exposures, lifestyle factors and gut microbiota health working in combinations create an end result of multiple disease states with false similarities?
I look forward to receiving your feedback.
Dr. Valerie

Wow!! I knew that understanding Parkinson’s was not easy, but Valerie, you did an excellent job of pointing out all the complexities and differing symptoms from one patient to another which would impact proper treatment and medication. Occasionally I will have a leg cramp in the middle of the night that is terribly painful & I try to compare that to what Joyce is going through with so much cramping throughout every day & night, & I cannot imagine the depth of her suffering. I just hope more can be done to relieve Joyce’s horrible pain.
Love, Mom
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