Finding Strength During Parkinson's Awareness Month
We dedicate the month of April to Parkinson’s awareness. The reason is simple, April is the birth month of James Parkinson. If you have not read his detailed first published description of this disorder, it is worth the time to do so. It is freely accessible here.
I get it that we use April for awareness of Parkinson’s. However, in reality, you and I think about Parkinson’s every hour, without a doubt, every day. You are aware of Parkinson’s every day, so please remember the words of Dorothea Dix “I have learned to live each day as it comes, and not to borrow trouble by dreading tomorrow.”
Included here is a brief reminder about what Parkinson’s is, and then words of strength and focus to help keep you, me, all of us ready to meet the challenge of Parkinson’s every day. For a relentless, unforgiving disorder like Parkinson’s, we must meet it head-on, prepared to focus and resist.
It reminds me of the comment made by former U.S. Senator Johnny Isakson “With Parkinson’s you have two choices: You can let it control you, or you can control it. And I’ve chosen to control it.”
What causes the disease?
Parkinson’s is a neurodegenerative disorder, which primarily occurs in the elderly population. Parkinson’s typically happens sporadically, and this means the cause is usually unknown. Those in the younger age groups may have evidence of some genetic mutations that will lead to what is termed early-onset Parkinson’s.
The onset of Parkinson’s is very complicated with several disease-causing (pathology) events. The region of the brain that is most affected by Parkinson’s is named the substantia nigra. The substantia nigra is responsible for producing the neurotransmitter dopamine. Thus, Parkinson’s results from the damage or death of dopamine-producing (“dopaminergic”) neurons.
Parkinson’s slowly evolves over several years, and the progression of symptoms is quite variable in most persons-with-Parkinson’s (PwP). Thus, individuals may have some or all of the primary symptoms of Parkinson’s:
- Rigidity (stiffness of the limbs and trunk)
- Bradykinesia (slowness of movement)
- Postural instability (impaired balance and coordination)
- Tremor (trembling in hands, arms, legs, jaw, and face)
These symptoms describe Parkinson’s as a motor-based disorder. However, there are many other non-motor features of Parkinson’s and may include depression, apathy, psychosis; difficulty in swallowing and speaking; urinary problems or constipation; and sleep disruptions.
Hope is part of the foundation
Five words for helping you cope, resist, and sustain a high quality of life in the presence of your Parkinson’s: Hope, positivity, persistence, mindfulness, and courage.
Hope- Being hopeful means you have not given up and are still focused on your health to remain stable. Hope may be an elusive concept, but it must be part of your foundation in dealing with this disorder. I understand how hard it is, how demoralizing Parkinson’s can be, and we always have other things to deal with at the same time as our Parkinson’s.
Currently, I am dealing with a recurrent lower back injury, and it is back again. Coupling the effort to heal up my back and stay vigilant against Parkinson’s is not a trivial task. The back injury reminds me of what I have endured before, and knowing that I can heal makes me hopeful.
Have a positive attitude
Positivity- A positive attitude will make a difference. It always will. As you live with Parkinson’s, please remind yourself that a positive attitude is overwhelmingly the correct response you need. If the negative starts to sneak in, then your effort to thrive will be hampered.
It is effortless to be negative, let’s face it, we have Parkinson’s. I am constantly trying to decide about retirement full-time instead of the phase-out-plan I am currently following. But staying in this academic position provides a positive reflection that allows me to focus my effort on dealing with Parkinson’s.
Positively, I am poised to maintain my best action against this disorder. And it reminds me of a comment once made by the famous football coach, Vince Lombardi, “The measure of who we are is what we do with what we have.”
Persistence- Life is rarely easy. Life in the presence of Parkinson’s adds to the complexity of your life. Being persistent does not mean being stubborn. Being persistent says you are willing to deal with this disorder. It tells you to have the ability to adapt and continue to thrive in your life and the world around you.
I have been trying to learn how to play the electric guitar for a while now. It matters to me, and I am convinced that it is a good exercise for my fingers, my arms, my mind, and it is fun. I have figured out that my frustration was trying to practice in a non-optimal period of therapy.
Now that I understand the best time of day to get the electric guitar out to practice, it is much better. I may still be the world’s worst guitar player, but I am okay with that in my little world. Learning to play matters, and being persistent pays off.
Be mindful of the present moment
Mindfulness- Mindfulness is not an easy subject to describe. However, being mindful really can go a long way to relieving stress or troubles in your mind or your daily life. Mindfulness makes you focus on the current moment, the thought now, not yesterday or tomorrow. It is that simple, freeze the frenzy and focus momentarily on the moment, now.
It is not like a bit of daydream; it is more like clearing your mind of the clutter, breathing deep, and focusing on it right now. The master of mindfulness, Thich Nhat Hanh, says it best, “The past is gone, the future is not yet here, and if we do not go back to ourselves in the present moment, we cannot be in touch with life.”
Show daily courage
Courage- Your courage shines through each day you live with Parkinson’s.There is no doubt that you have courage and strength; I know because I live with this disorder as you do. Showing this daily courage is your decision to accept the diagnosis, your ability to process the fact that it is not going away, and your ability to get up each day and live through the process.
Being courageous is doing the little things like going to the grocery store or playing golf or pickleball (whatever your favorite activity is?). Being courageous tells your loved ones that you are still here, still living and moving life forward every day. You are brave, and you indeed are a hero in the midst of living with Parkinson’s.
Honoring awareness month
Acknowledge your Parkinson’s every day, be aware of it constantly. Stay hopeful as you live through the changes that are slowly happening. Use positivity to cast out the negativity that comes with the disorder. Persistence is a vital tool in your arsenal of responses. Use mindfulness to self-check yourself in letting go of yesterday and not fearing tomorrow. And stay strong; getting up each morning shows your courage to live in the presence of Parkinson’s.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?