The Label “Exercise for Parkinson's" May Do More Harm Than Good

Opinions vary as to what type of exercise is appropriate or beneficial for those with Parkinson’s Disease—everything from gentle yoga to high intensity aerobics, chair exercises to boot camps, not breaking a sweat to forced exertion with continuous sweat.

Our Australian correspondent and guest blogger, Neil Sligar, has developed an approach that has worked well for him for nearly 13 years. 

The following is Neil Sligar's opinion:

 

I rarely publicize my athleticism with Parkinson’s, fearful that the general public may think the condition less nasty than it is.

I particularly welcomed your remark about “exercise for Parkinson’s” and how you are more comfortable exercising (“moving” may be a preferable description) with the wider world.

My training regime was commenced in the year 2000 for overall health and because I enjoy it. It continues for that purpose. It’s conducted in the company of cheery young people who lift my spirits. It pursues little improvement targets rather than ambitious goals. I aim to finish each session feeling around 8 on a scale of 1 (barely any effort) to 10 (exhaustion). My overall mantra is “Do your best. No-one can do better.” I can accept that a 25 year old man or woman may go faster and further but I’d be very cranky if they’d worked out harder than me.

I’m not into bravado. Safety is paramount. I’m likely to be found exercising alone but if using weights, always within sight of someone else.

To me, exercise means flexibility + aerobic (puffing) + strengthening.

Some days I feel good. Other days may be terrible. I turn up for training regardless of my condition on the day. Sometimes when feeling terrible, I perform at my best. During my June 2011 video, I felt at my worst and was very shaky and rigid. Yet with encouragement from fitness instructor Danielle, I pulled out one of my better efforts. (See link to video.)

My few encounters with “exercise for Parkinson’s” have left me feeling patronised by “experts” who seem reluctant to accept that, despite the condition, I’m faster and stronger than most men of my age. The explanation for my capability is very simple. I train hard and assume that all things are possible until proven otherwise. Others with PD run marathons or cycle long distances or climb Mount Kilimanjaro or lift heavy weights.

Before diagnosis we were a heterogeneous bunch with vastly differing habits and preferences. Now we live with PD, at various stages of the condition, why is it that we should be corralled together for “Exercise for Parkinson’s”?

Some Parkinson’s websites counsel us to be “assessed” by a physical therapist before starting an exercise program, then supervised in exercises specifically focused at Parkinson’s. Other websites counsel us to ask our doctors what exercises they recommend. What do they know about exercise? Does their medical training include anything to do with the topic? The upshot too often is that PWP are informed of an “exercise for Parkinson’s group” in which PWP are brought down to that minimal level at which all PWP can participate. Some PD exercise groups are conducted sitting down and use soup tins as weights.

Why not begin with the assumption that we are not handicapped until evidence is found to the contrary? Then treat that specific shortcoming rather than consign someone labelled “Parkinson’s” to a group for those of lower physical capacity?

Some people wish to cluster with others diagnosed with PD. Others, like me, wish to remain fully participating in the wider community. Some join dance classes for those with PD. Others prefer to dance with the wider community.

Over fourteen years following diagnosis of Parkinson’s disease, my fitness level is far superior to what it was prior to 2000.

Learn more about Neil Sligar from:

Video and PDF of Neil’s presentation to the Parkinson’s Australia conference in Brisbane, July 2012

http://www.parkinsonsconference.com.au/presentations2012.php

Video shown at the conference is a four minute abbreviation of a twelve minute video produced in 2011.

http://www.youtube.com/watch?v=R_-nRQmO8ko

Read more from Neil Sligar at:

Parkinson's Disease and Intense Exercise

http://katekelsall.typepad.com/my_weblog/2010/01/parkinsons-disease-and-intense-exercise-neil-sligars-10-year-experience.html

An anonymous piece written by Neil Sligar for the Parkinson’s NSW annual report in 2012 http://www.parkinsonsnsw.org.au/assets/attachments/documents/AnnualReport_2012.pdf

 

Disclaimer: Those contemplating a vigorous exercise program should first ask a medical practitioner to check their overall general health.

 

Comments

[kaitlyn roland]

I'm so glad you brought up the fact that everyone with Parkinson's faces their own unique "version" ... it slows some people down and inspires others to move FASTER! this is so inspiring... keep it up! kaitlyn
http://kaitlynroland.wordpress.com

[Neil Sligar]

Thanks Kaitlyn. Yes, different "versions" of PD, different personalities, different motivations, different aspirations, different ages. What is essential is that some form of activity beyond the usual daily pace becomes a regular part of life, an activity to which PWP look forward. Neil

[Ted]

I see. So it has a lot to do with mental and emotion.
Thank you for the great post!