Shake, Rattle and Roll

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.

 

Speech Therapists--I Applaud You

 
The King's Speech sings the praises of a speech therapist, typically an unsung hero. The movie is about Britain's King George VI’s (Colin Firth) struggle with an embarrassing stutter for years until he seeks help from unorthodox Australian speech therapist Lionel Logue (Geoffrey Rush).

While I don’t have the same stuttering problem as King George VI, I do have voice and speech challenges as a result of Parkinson’s Disease and Deep Brain Stimulation. Identifying with King George VI (“Bertie”), I feel the agony of Bertie, similar to the discomfort that I experience when struggling to get my words out. I empathize with his self-consciousness and his lack of spontaneity in speaking. Bertie is reluctant to let his guard down and have fun with his untrustworthy voice and speech. He dreads the microphone, while I dread the telephone. His constricted throat and voice cause him to seize up while speaking. Bertie's pauses and silences are humiliating and torturous, and listeners are embarrassed on his behalf.

I admire the novel approach of Lionel, the speech therapist, particularly during the time period in England when elocution was the focus of speech therapy. Lionel does everything possible to help Bertie break his entrenched pattern of stuttering. He instructs Bertie to read out loud while Lionel simultaneously plays a recording of orchestra music in the background. Bertie becomes nearly stammer-free, at least temporarily, during that exercise. Lionel forces Bertie to sing tongue-twisters as a way to help with the smooth flow of his spoken words. He encourages Bertie to bellow vowels out the window. Lionel insists that Bertie combine speaking with movement by doing speech exercises while waltzing.

I am blessed to work with speech therapists who are willing to use innovative methods to help me with my speech and voice problems.

They inspire me when I lose hope.

They listen when others fail to understand. 

They calm me when I am angry and frustrated.

They instruct me by their words and example.

They challenge me to be all that I can be.

Just as the audience applauds at the end ofThe King's Speech, I applaud speech therapists for helping me regain my voice and express myself.

The Show, Like Life, Must Go On

The 70 and 80-year-old singers from Northampton, Massachusetts in the documentary, Young @ Heart, have just the right qualities to make it to 100. The show, like life, must go on.

British film director, Stephen Walker shows the sassiness and struggles of a handful of the 24 choir members, spotlighting their particular idiosyncrasies, their quotable quips and their health problems to give us vibrant portraits of each.  The Young @ Heart chorus has built its reputation upon morphing contemporary rock tunes into their own musical genre.

This film is heartwarming and hilarious, not a depressing visit to an old-folks home. The Young @ Heart singers have traded their rocking chairs in for rocking out.

The singers are led by their demanding chorus leader Bob Cilman, who at 53, is a generation younger than his students. Cilman, a genius when it comes to song selection, knows just how far to push. He has the patience of a saint, yet can be a demanding authority figure and tough on them when necessary. Young @ Heart begins with Cilman preparing the chorus for a gig, which will include five new songs and mark the return of a pair of chorus veterans who had been sidelined due to health reasons.

These septuagenarians and octogenarians possess the characteristics that translate into longevity: a positive attitude, a reason to get out of bed in the morning, an appreciation of the challenge of learning new things, and the ability to adapt to change and cope with loss and death:

 

Positive Attitude

The oldsters have a sense of humor about themselves.

This spirited group of people is determined to live life to the fullest. The messages conveyed in the film include:

·        Every moment counts

·        Nothing is impossible

·        Have you hugged an old person today?

A Reason to Get Out of Bed in the Morning

The camaraderie of the fellow singers and performing for others give their choir members a reason to get out of bed every morning. They are having the time of their lives as they travel the world, entertaining audiences that range from the crowned heads of Europe to prisoners in the nearby jail. 

 

The Challenge of Learning New Things, such as Complicated Song Lyrics

Although most members of the group prefer classical music, opera or Broadway show tunes, they do punk, classic rock and a wailing R&B. They give songs whole news meanings.

Ramones' song about drug burnout, "I Wanna Be Sedated," morphs into a commentary on aging.

"Just put me in a wheelchair, get me on a plane

Hurry hurry hurry before I go insane

I can't control my fingers,

I can't control my brain!"

Prince's "Nothing Compares 2 U" becomes not a lament to lost love but a farewell to a dead companion.

Bob Dylan's "Forever Young," sung to a group of prisoners, is no longer about a parent advising a child; it's the voice of a passing generation begging the people coming along behind it to straighten out their lives.

In James Brown's "I Feel Good," the two selected to lead never get their rhythm and lyrics in sync. The male singer repeatedly tries and fails, to wrap his mouth around the two lines he has to sing. 

They’re a determined bunch as they attempt get the rattling tune “Schizophrenia” by Sonic Youth just right.

But that’s nothing compared to Allen Toussaint’s “Yes We Can Can,” which they have trouble memorizing because of tricky lyrics that repeat the word “can” 71 times in various combinations.

 

The Ability to Adapt to Change and Cope with Loss and Death

The members of this choir can see the Grim Reaper in the near distance but keep on singing.

"Did you see the white light everybody talks about?" one chorister asks another who's had a near-death experience.

"No" she replies. "I refused to look."

Two other choir members return to the group following long illnesses and are greeted with open arms. But one suffers a relapse that makes his performance at the new show they’ve been working on doubtful. In fact, there are two deaths that occur in one fateful week just before the big show. These moments are handled touchingly, and with dignity. The deaths put a damper on things momentarily. In the end the message is clear: like life itself, the show must and does go on.

For more information about Young @ Heart check out their website at: http://foxsearchlight.com/youngatheart/

Check your local listings for theaters and times near you.