PD Community BlogRead Blog

Re-Prioritizing Hopes

Monday April 21, 2014

With over ten years gone since my diagnosis with Parkinson’s Disease, I’m trying to tamp down my greatest hope. That selfish and obvious hope? Of course, it’s for a PD cure.

What’s the problem with hoping for a cure? In the abstract, there is nothing wrong with this. In fact it’s impossible not to hope for such a thing if you have this collection of afflictions we call Parkinson’s Disease. And it doesn’t mean that we shouldn’t have hope for the day when we eliminate Parkinson’s Disease from the catalog of human misery, or stop working for it. I sincerely believe that day is within reach. I’m just trying to radically scale it back in my hierarchy of hopes.

Why scale back hope of a cure? First, at 55 years old, I’m brought up short by the amount of time and money it takes a new drug or device to work its way through the system.  A new molecule takes many years and multiple millions of dollars to reach patients. For all the good faith of those trying to hasten the process, there are legitimate reasons, like safety, that will always make the process too slow for some.  As Neil Young sang “An ambulance can only go so fast.”

Second, who can say that one molecule or procedure will constitute a cure? As Neurologist-with-PD Dr. David Heydrick points out, Parkinson’s is complex. To paraphrase Winston Churchill, it is complexity, wrapped in intricacy, hidden in multiplicity. This suggests that there is no silver bullet. It may be more of a combination of approaches that makes the “cure.”  We may be looking at surgery, plus exercise, plus medication, plus nutrition, plus... who knows? Researchers are doing amazing and imaginative things. But as it is, as we beat on toward the center of this question, there is still much to answer.

“Great” you say, “This is depressing! Why did I ever even start to read it?” Good question. The answer: I’m trading in hope for that grand moment the cure turns up for the hope that there are things I can do today that will make my Parkinson’s symptoms and progression more benign. If we want a decent quality of life today, we can’t let the hope that someone, someday will fix us lead us to neglect the things we can do for ourselves right now. And what we can do now turns out to be big.

One of the worst things about being told that you have a progressive, debilitating and incurable disease is the feeling you have of naked helplessness. Well, with garden variety, ideopathic Parkinson’s Disease, you don’t have to believe that anymore. Hooray! We aren’t helpless! Oh crap! That means we have responsibility.

If you will exercise, an impressive number of studies show you can improve your symptoms, from tremor and micrographia to falling. If you do Lee Silverman Voice Therapy, you will end up speaking more clearly, have more facial mobility, and cope better with swallowing. The more you learn about medicines for PD, their interactions with other medications and common side effects, the better your chance of negotiating the complexities of these questions. All signs point to the fact that you can manage aspects of Parkinson’s in ways that will significantly improve your quality of life today.

Are you obligated to do any of this? Perhaps not. But you are obligated to think it through and have a good reason to say no. My hope these days is that more people with Parkinson’s disease will find reasons to say yes.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

Recent Posts

Living for a Cure
Three Huge Changes for People with Parkinson's
Caregiving, the Next Level
Parkinson's Pundit


Advocacy (1)
alternative therapies (1)
Antioxidants (1)
Blood Pressue (1)
Boise (1)
bradykinesia (1)
bradyphrenic (1)
Care Resources (1)
Caregiver (2)
Caregivers (1)
Caregiving (7)
Cognitive Health (5)
Community Programs & Updates (1)
Complementary Therapy (4)
Comprehensive Care (5)
Creativity (4)
Dairy (1)
Deep Brain Stimulation (3)
Diagnosis and Progression (15)
diet (1)
Diet (1)
Digestion (1)
Dizziness (1)
Eating (1)
Education (1)
Embarrassment (1)
Emotional Health (7)
Encouragement Inspiration and Motivation (8)
Everyday Changes (1)
Exercise (18)
Family & Friends (1)
Family Members (3)
Food (1)
Friends & Family (3)
Goals (1)
Hiking (1)
Hope (3)
Hot Off the Press! (5)
Income (1)
Julio Angulo (2)
Lactose (1)
Lifestyle (6)
Living with Parkinson's (3)
medical safety (1)
Medical Therapy (1)
Medication (2)
Medication Side Effects (9)
medications (2)
Milk (1)
Mindfulness and Spirituality (3)
Movement (2)
Musings (3)
Nature (1)
Navigating Healthcare (1)
Non-movement Symptoms (12)
Northera (1)
Nutrition (12)
NWPF (1)
Our Community (3)
Outdoors (1)
Outside (1)
Parkinson's Community (4)
Parkinsons Medical Therapy (13)
Parkinsons Nutrition (1)
Parkinsons Research (4)
Person with Parkinson's (1)
Peter Dunlap-Schohl (6)
Poetry (1)
posture (1)
Psychology (2)
PWP (1)
Relationships (5)
Self-Care (27)
Shame (1)
side effects (1)
slowness (1)
Social Security (1)
Supplemental Security Income (1)
Surgical Therapy (3)
Symptoms (15)
The Amazing Race (1)
The Amazing Race Canada (1)
The Tims (1)
Tim Hague (2)
Tim Hague Sr. (2)
Travel (1)
Travel Tips (1)
Travelling (1)
Trips (1)
Vacation (1)
Vitamins and Supplements (9)
walking (1)
Walking (1)
Work (1)


2015 2014 2013 2012
Most popular posts of 2012
What are you grateful for this holiday season?
How can I tell whether medications are wearing off or Parkinson’s disease is progressing?
Can a person with Parkinson’s give blood?
When is the right time to start Levodopa?
Can acupuncture help PD symptoms?
Support the Caregiver in your Life
Power of the mind to move treatment further
Top 10 Foods for Parkinson’s (and counting!)
How can I prevent dizziness?
What can you tell me about laser light therapy and Parkinson’s
What is music therapy?
Should I take Coenzyme Q10 for my Parkinson’s?
How do I treat my cough at night?
Parkinson’s fitness programs need to be tailored to the individual to get results
Carrying the Olympic Torch for Parkinson’s today
Coffee reduces risk of Parkinson’s. What about other foods?
Facts about depression
How can I find a good doctor who is knowledgeable about PD and is caring as well? My doctor does not always listen.
Help for constipation
Sex, Intimacy and Parkinson’s
Does DBS affect speech?
Walking and balance can significantly impact quality of life- but is treatable.
Depression is common with Parkinson’s
Ode to Parkinson’s- Poem from Member
Music Enhances Brain Activity
How does posture change with Parkinson’s?
What is important to you?
Are hallucinations caused by Parkinson’s?
Hot Off the Press – Neupro approved by FDA
How do I find a Parkinson’s physical therapist to keep me exercising?
Does Azilect slow disease progression?
Manage nausea from medicines
Is delaying medication harmful?
Advice for newly diagnosed
Is Parkinson’s Hereditary?
Medication Timing
Is gambling a side effect of medicine?
Medication Assistance
Does stress cause Parkinson’s?
When to see a physical therapist
FDA approves DATScan
Coconut Oil
Protein’s effect on medicine
Restless Leg Syndrome