Parkinson’s: Dazed and Confused

“We cannot change the cards we are dealt, just how we play the hand.”  Randy Pausch

The good news is that my diagnosis explains all of the health issues I’ve had for the past three years. The bad news is that I’ve been diagnosed with Parkinson’s.  If you don’t know anything about Parkinson’s, go to this website and read a brief overview:

Before the Diagnosis: The path to my Parkinson’s diagnosis includes the following medical studies. First, stiffness in right hand that was thought to be osteoarthritis (3 yrs ago).  Second, swallowing problems that led to barium-swallowing/esophageal motility/pH studies (2.5 years ago).  Third, stiffness now including the right side of my neck, which led to PT and to MRI (2 years ago). Fourth, the neck stiffness/swallowing defect led my team to consider Amyotrophic Lateral Sclerosis (ALS), which prompted the EMG study [Electromyography measures muscle response to a nerve’s stimulation of the muscle]. I did not have ALS (2 years ago)! Fifth, my sweating and shortness of breadth led me to my Cardiologist for a stress test and for cardiac catherization evaluation for coronary heart disease (CHD).  I did not have CHD (16 months ago)!

The opening line to one of Led Zeppelin’s best live-concert songs, “Dazed and Confused” was exactly how I felt: “Been dazed and confused for so long, it’s not true.”

 Getting the Diagnosis: The next stop was to see a movement-disorder Neurologist, leading to the diagnosis of Parkinson’s (1 year ago).  While I followed a crooked path to get to a Parkinson’s diagnosis, my many wonderful Physicians were just trying hard to solve my maladies.  It took a talented Neurologist to straighten that crooked path to unite all of my problems directly to Parkinson’s.

 After the Diagnosis:

“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” Michael J. Fox

My symptoms are made better when I am not cold, not under undue stress, and have adequate sleep.  I can add physical injury, pain from a sports injury robs me somewhat of the dopamine I still possess.

My simple analogy about Parkinson’s and dopamine is like a car with a fuel tank leak.  You constantly are low on fuel (Dopamine) so you are always adding fuel back (Dopamine Agonist), yet you never have a full tank.  My life now is balancing fuel consumption (use of a dopamine agonist plus remaining dopamine) with factors that accelerate dopamine (fuel) consumption.

Everyone with PD expresses his or her disease differently, it’s very unique, but I remain dedicated to slowing the progression. I hope to keep going strong for many more years. With a lot of support from family, friends, lab group, and 2 wonderfully caring physicians (Neurologist and Internist), I am still working hard, maintaining a very positive/pro-active attitude to tackle my Parkinson’s.

“It’s not how hard you hit. It’s how hard you get hit…and keep moving forward.”  Randy Pausch

My strategy for treating Parkinson’s goes as follows:

Dopamine Agonist: Ropinirole (3x daily)
Experimental: Isradipine (a dihydropyridine-class calcium Channel blocker; 3x daily)
Other Daily Treatments (CAM, Complementary and Alternative Medicine):
Vitamin D3 (5000 IU MWF)
Vitamin E (400 IU daily)
Vitamin C (1000 mg daily)
Grape Seed (100 mg polyphenols, 1 cap daily)
Vitamin B Complex (B1, B2, B3, B6, Folate, B12, Biotin, Pantothenic, 1 cap daily)
N-Acetyl-Cysteine (NAC; 600 mg x 2 daily)
Ubiquinol (reduced CoQ10, 100 mg daily)
Resveratrol (200 mg trans resveratrol daily)
Melatonin (3 mg 1 hr before sleep)
Probiotic Complex with Acidophilus
Daily multiple vitamin
See previous post entitled “Exercise and Parkinson’s” for details.
Meditation (20 min 3-4 days/week)
Deep-tissue massage with healing therapy (every 2 weeks)
LSVT Loud Voice Therapy (just completed)
LSVT Big for movement [Tai chi-like (begin next month)]

Cover photo credit:

3 Replies to “Parkinson’s: Dazed and Confused”

  1. I’m four years into my journey. I love the MJF quote. He simply doesn’t know how to stop fighting, so neither should we. With men like him helping to fund research I believe we shall see a cure – or at least significantly better treatments I wish you well on your journey and thank you for sharing your knowledge and experience with us. My poetry blog has very little PD interest – I need to get away from it after all. Far, far away!


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