January 2023

Delay Penalty

Few things come easily to those of us with Parkinson’s Disease. From the simple, tying your shoes, to the complex, rising from a chair, PD is there to make life more difficult. So anything that’s easier to do with PD, that doesn’t fit the pattern, invites scrutiny. Of those things, what could be easier for a person with Parkinson’s than procrastination?

We people with Parkinson’s are natural procrastinators. We have two speeds, slow and slower, both of which are admirably well-suited for the practice of procrastinating. In addition, we are easily distracted, another key to successful procrastination.

Time to order refills on my meds? I’ll get to it. Need to make an appointment with the neurologist? All in good time. Some light housekeeping? I’m having an “off” right now, can it wait ‘til I’m on? When it comes to putting things off, we’re naturals. We put the “pro” in procrastination.

It’s so Parkinson’s that a thing we can do well is not something we want to do. 

But if you must procrastinate, consider what you may not want to put off until tomorrow. It has been shown several   interventions, if implemented early, can dampen the severity of Parkinson’s Disease progression over time, potentially delivering years of higher quality of life to you if you act now.  

The conventional wisdom has been to delay treatment with levodopa until a patient “progresses” to disability. But a paper recently published on Pubmed, The National Institute of Health Web site, questions this established practice. “There is increasing evidence to challenge the traditional view that the initiation of drug treatment in Parkinson’s disease (PD) should be delayed until the patient has significant disability such as to affect work or social function. Firstly, to delay treatment sentences the patient to protracted impairment of quality of life that could be improved by therapy. Secondly, there is evidence to support the notion that earlier rather than later initiation of treatment leads to better long term motor benefit.”

An even stronger case can be made for implementing (and sticking with) an exercise plan. According to the MJ Fox Foundation “A recent study showed that exercising just 2.5 hours per week could help delay progression of…  the disease.”

The study, published in the Journal of Parkinson’s Disease, monitored the self-reported exercise of more than 3,400 people with PD over two years. The researchers found that, during that time, people with Parkinson’s who consistently exercised 2.5 hours per week had a smaller decline in mobility and quality of life compared to people who exercised less or not at all.

Likewise, a small study of early intervention with DBS surgery showed impact on the progression of Parkinson’s. Said one of the study’s authors “With this pilot study, we’ve shown that if DBS is implanted early, it’s likely to decrease the risk of progression, and if this is borne out in our larger study it would be a landmark achievement in the field of Parkinson disease.”

 Seeing a pattern emerge?

It looks like early intervention with any of the known treatments for PD symptoms leads to better long- term outcomes. 

At least two things are at stake here. The first is money. Parkinson’s care is most expensive in the final stages of the disease. If you can delay the onset of symptoms that land you in a managed care facility, you will not drive such a high rate of spending. Good for you and good for the rest of us as we try to contain the crazy cost of health care in this country. Second, and more important, you will have a better quality of life, less troubled by PD symptoms, plus more and better time to spend with the ones you love. 

What are you waiting for?

by Peter Dunlap-Shohl
NW Parkinson’s Blogger