April is Parkinson’s Disease Awareness Month

April is Parkinson’s Disease Awareness Month

by Larry Ladd

I was sitting in a Parkinson’s disease support group in Florida, listening to a motivational speaker. Some motivational speeches do not inspire me; especially when they employ simple slogans like, “You have Parkinson’s disease, but Parkinson’s does not have you.” That type of oration does not sit well with me. It just did not ring true. Of course, PD (my name for Parkinson’s disease) had me. Why else would I be sitting here being motivated? Why would I be taking all these pills? My mind wandered when something was said that caused me to think of a song from West Side Story—the ‘Jet Song.’ It seemed to me that the Jet Song could be adapted if I substituted “Park” for “Jet.” So, I came up with a song, which partially describes some aspects of PD. I have since added an interpretative glossary to help in understanding the song’s references.

A Parkinson Song

Tune: “Jet Song” from “West Side Story,” adapted by Larry Ladd

When you’re a Park, you’re a Park all the way

From your first Sinemet to your last Parkin’ day.

When you’re a Park, you may freeze. You may fall.

Your meds either work or do nothing at all.

You’re stiff as a bone.

Your wiring is defective.

Your muscles are stone.

Your neurons aren’t protected.

You’re disconnected.

When you’re a Park, you’re in good company.

Look at Michael J. Fox and Muhammad Ali.

When you’re a Park if your future seems grim,

Other Parks understand and you can lean on them.

You act like a flake.

Your memory may be shaken.

Are these pills I need to take? (speak or sing)

Or, ones I should have taken?”

Could I be mistaken?”

Then, your meds flip a switch

And your synapses start firing,

You move without a hitch

And not a sign of tiring.

You are inspiring!

When you’re a Park in a Parkinson’s group

You’ve got friends all around; and there’s time to recoup.

When you’re a Park, you can dance in a chair.

You can sing really loud like you don’t have a care.

When you’re a Park … YOU … STAY … A … PARK!

GUIDE FOR INTERPRETING A PARKINSON’S SONG

Park: a person with Parkinson’s Disease (PWP).

Sinemet: brand name for carbidopa/levodopa, the “gold standard” treatment for PD.

Meds either work or do nothing: the medications used to treat PD may or may not be effective in controlling the symptoms.

(see “flip a switch”)

Freeze: inability to take the next step when walking. May be a brief hesitation or a noticeable pause.

Fall: an unintended and unexpected loss of balance, which results in dropping to the floor.

Stiff as a bone: postural rigidity, muscle and joint tightness.

Wiring is defective: the nervous system, the spinal column, and the brain are the “wiring.” When neurons are unable to transmit, or receive messages they are defective.

(See “flip a switch”)

Neuron: the nerve cell body and its components-cell body, axon, dendrites.

Fox and Ali: well-known PWP.

Future looks grim: anxiety and depression are often present in the PWP personality profile.

Lean on them: Support groups are effective.

Like a flake: dementia is a description of behavior that may be characterized as “flaky”–i.e. disoriented, confused, poor memory, poor judgment.

Flip a switch: “on/off effect” a sudden and variable change in motor or non-motor performance. You either wear off like a dimmer switch or turn off like a standard switch.

Synapse: the space between two dendrites where the “spark” of messaging occurs. Where

healthy cells transmit messages.

Dance in a chair: PWP often sit down to dance, exercise, practice yoga, etc.

Sing really loud: Lee Silverman Voice Therapy LOUD program has demonstrated that practicing loud speaking and singing can offset the soft voice associated with PD.

Karen and I have found several things to be helpful in dealing with PD for the past 23 years: keeping a positive attitude, maintaining our sense of humor, learning everything we can about the disease, exercising and moving as well as possible, finding support through family and friends and trusting in God.

We are fortunate that here in Jacksonville we have the help of Passavant Area Hospital with our Parkinson’s Support Group that meets there the first Wednesday of each month from 6-7 p.m. (during April-December). Please call Karen or Larry Ladd at 217-377-4973 for more information. There is also an exercise class for PWP and their care partners that meet weekly on Thursdays from 1-2 p.m. at the Spirit of Faith Church. To register for these classes, please contact Eve Fischberg at 217-494-4961.

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