My Name is Peter Lancaster
I have Parkinson’s Disease, (PD).
I’m very vocal about it, too.
Ask me questions.
I will talk about it any chance I get…why? Because the more you know about why I move the way I do the more you’ll understand PD.
Let me give you a bit of my history with PD.
How did I get PD?
I’m a Vietnam war veteran. I was stationed in Udorn, Thailand at a little radio listening station called 7th RRFS (Radio Research Field Station) Ramasun. We intercepted top secret radio communications from the Vietcong. While there, I was exposed to Agent Orange, Ranch-hand, and other herbicides. These herbicides cause PD. Symptoms may not show until decades later.
About 30 years later, I was at my GP doctor for a physical. He noticed my right hand had a rolling tremor while at rest and immediately sent me down the hall to a neurologist who eventually pronounced me a PWP (person with Parkinson’s). Having no idea what Parkinson’s Disease is, I went on my jolly way home. I found it to be degenerative, neurological disease that eats away at part of the brain that controls fine motor movement. By the time my first tremors became noticeable, 80% of the small motor controller section had died. There was no getting that section up and going again.
My neurologist prescribed Sinemet (carbidopa/levodopa), the gold standard of medicine to control PD tremors. Sinemet causes nausea, also. Stalevo 100 was prescribed. It has an additional component, entacapone, to reduce nausea. The nausea subsided but continued for 7years. I expected nausea for the first few hours of my day. I started my meds at 6:00 AM and by 11:00 AM I was feeling well enough to emerge from my hiding place to join in on the day.
As the PD slowly progressed, the dosage went from Stalevo 100 to Stalevo 250 the maximum dosage and it was soon evident something more was needed to control the tremors.
Then suddenly, after about 7 years on Stalevo it just stopped working! “These things happen”, I’m told. You see, PD is very unpredictable. And, the experience one person as could be completely different from another’s.
My tremoring progressively became worse. Rytary, a new drug, was my last hope. It worked well for awhile then, and with no warning, the Rytary stopped working. This is called going “Off”. It’s when the medication just suddenly stops working. It will eventually go back “On” to control my tremors once again. But, the length of time it takes to cycle from Off to On varies is impossible to predict.
To provide an extra line of defense DBS can be implanted. DBS (Deep Brain Stimulator) is an electronic device, similar to a heart pacemaker. Holes are drilled in the top of the skull and long probes are inserted into the brain. This DBS system bathes the area of the brain responsible for small motor movements with electric pulses which encourage dopamine to be produced again and blocks some of the erroneous electronic signals generated by the brain. However, like the pharmaceuticals that have maxed out their effectiveness, the DBS may max out in the future, too. Remember, this is a degenerative disease and there is no known cure, today.
Pharmaceuticals and DBS are only temporary ways to stop or slow the disease’s progress.
PD has an absolute ton of symptoms that range from tremors, to anxiety to nervous monsters that wreck havoc with the natural rhythm that’s interior to the body, stripping it of balance, and feeling of calmness and quiet, replacing them with insecurity, unsteadiness, constant noise, and interior nervousness, just to mention a few of the non-motor symptoms that plague a PWP.
One of the most noticeable of the movement disorders, Freezing, which results in stopping all movement with no notice.
It happens as a PWP passes through a doorway, or when the floor changes color, when the carpet changes pattern, or when someone walks in the path of the PWP. To get going again, the PWP will use special words, or whistles, or sings a tune. Here again, nobody knows the cause of freezing and every PWP will exhibit different ways of showing what’s going on inside.
Then there’s days that you feel like your feet are stuck in mud while swimming through oily water. Every movement seems like it’s in slow motion. This is called Bradykenisia. It will last anywhere from a few minutes to hours to days.
Here are some symptoms:
Rigidity (stiffness) more slowness and at times, pain.
Postural instability which makes one appear drunk.
Handwriting becomes small and cramped.
Facial expression becomes still causing one to seem uninvolved and grumpy. This is known as mask face.
The voice softens.
Shuffling walk and slumped posture.
Speech becomes muffled/stuttered/slurred.
Restless leg syndrome.
Poor/no sense of smell or taste
Automatic muscle functions like breathing, swallowing having bowel movement, eye blinking slows or stops, tongue movement becomes thick, slurred speech.
For more detailed description of PD, please visit the Boyson Heights Library and borrow a copy of the Parkinson’s Disease Resource Guide 2020. Or visit www.neaurochallenge.org