Getting the diagnosis

Years before the movement issues, my symptoms started before anyone would think I might have Parkinson’s Disease (PD). One non-motor symptom at a time. Never connecting the dots. Loss of smell. Constipation. Paranoia. Disproportionate Anger (rage). Choking. 

Then suddenly I went from easy going, "ready to go anywhere" to having anxiety over the weirdest things. It's when acorns started piling up on my front walk that several people told me I was nuts. I saw a few psychiatrists and therapists. These specialists have a well earned stereotype of attracting the crazy people into the field of psychiatry and psychology. My favorite treatment was from a therapist who moaned on in my sessions that she had to get over issues too, she was too short to be a super model. And her solution to my panic attacks was to snap a rubber band on my wrist. That's all. If I get a panic attack, just snap the rubber band and like shout the preacher in Alabama, "anxiety be gone!" By the way the rubber band idea didn't work. The anxiety was connected to a lack of dopamine. There really is a long list of common symptoms for PD each on their own could be many things. 

If you’re new to the PD world, here are just a few non-motor symptoms associated with PD:

  • Mood disorders (depression, anxiety and irritability)
  • Cognitive changes (problems with focused attention and planning, slowing of thought, language and memory difficulties, personality changes, dementia)
  • Hallucinations and delusions 
  • Orthostatic hypotension (a drop in blood pressure when standing, light-headedness) 
  • Sleep disorders (insomnia, excessive daytime sleepiness, vivid dreams, talking and moving during sleep, restless legs syndrome) 
  • Constipation 
  • Pain 
  • Fatigue 
  • Vision problems 
  • Excessive sweating 
  • Dandruff (seborrhea dermatitis) or oily skin 
  • Urinary urgency (frequency and incontinence) 
  • Loss of sense of smell 
  • Sexual problems 
  • Weight (loss or gain) 
  • Impulsive control disorders (binge eating, excessive shopping or gambling) 
  • Soft voice 
  • Masking (no facial expression) 
  • Drooling or excessive saliva 
  • Speech 
  • Small handwriting
  • Choking 
  • Swallowing problems
The non-motor symptoms have a long lead in time, at least a decade before classic motor related symptoms appear.

In 2012 things got really bad. The motor symptoms began. I was shuffling my feet. I had extreme stiffness in my neck and shoulders. I couldn't walk two blocks without stopping to rest my back.

My wonderful wife and my primary care doctor did the detective work.  They put everything together, all the symptoms and insist I see a neurologist.  By the way, my wife also found the primary care doc! I am lucky, she not so lucky. A PD caregiver's life is no picnic.

The neurologist ran some motor tests but the real test was when the doctor prescribed a trial of Sinemet (Carbidopa-Levodopa), my symptoms were better right after taking this med, the neurologist diagnosed it as Parkinson’s.

PD or Young Onset Parkinson’s Disease (YOPD) which is the label I was given because the diagnosis was before 50 years old, affects everyone differently. You may or may not get tremors. You may or may not have a slow gait. Etc. It’s all so variable. 

Find a movement disorder specialist (a neurologist who has a specialty in treating PD) that you like, don’t worry about switching doctors. My first movement specialist wasn't the greatest match, the second guy was great and stuck with him for a few years. At a seminar on PD treatment options I met a cool young doctor and made an appointment to see him. I am glad I checked out my options because he's great and I feel very comfortable with him. 

Note that it’s not uncommon to change your PD doctor a few times.

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