Parkinson’s and Discrimination

Tremors or shaking that cannot be controlled is a major symptom of Parkinson’s disease. Modifications to language, speed and facial expressions are also common. With the decrease of mobility and independence, depression is a side effect often observed in those suffering from Parkinson’s disease.

The struggle is hard not only for the individual with Parkinson’s but for their family and friends as well. Over and above the disease itself, its side effects and its impact on lifestyle and family and friends, Parkinson’s sufferers often have to deal with discrimination as well.

Shaking, slurring speech and slowness are symptoms that often cause Parkinson’s disease sufferers to be mistaken for intoxicated individuals. Examples of this kind of discrimination include when a Parkinson’s sufferer is yelled at in public, is refused service and even is arrested for being drunk and disorderly.

Simple activities that most of us take for granted, such as buying groceries at the supermarket or attending a restaurant for dinner with friends, are often more difficult for Parkinson’s sufferers with decreased mobility and physical impairments. However, participating in such outdoor and social activities often bring joy and happiness and ease loneliness. Parkinson’s sufferers should be encouraged and assisted in enjoying the same freedoms as healthy individuals.

Feeling isolated, uncomfortable and/or nervous in public is not conducive to alleviating the everyday stress and struggles of Parkinson’s sufferers. Public drunkenness is not only illegal in Canada, it can also be very embarrassing- not a quality anyone wants falsely assume.   

People should look and investigate carefully before pointing fingers. Making Parkinson’s sufferers more self-conscious is not helpful when it comes to promoting a positive attitude. If the public were more educated and aware of how serious the disease is, what exactly the symptoms are and how prevalent they are, it may do a lot to reduce these kinds of hurtful mistakes. 

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The Fox Trial Finder

Under-enrollment is one of the most significant problems facing Parkinson’s drug development, according to the Fox Trial Finder website. Eighty per cent of Parkinson’s clinical trials fail to recruit enough volunteers within planned timelines, forcing studies to finish late or never really get started.

Such a discouraging statistic could have been a driving force behind the Fox Trial Finder, a tool developed by experts that matches up trial teams with those that want to participate.

Launched in April 2012 by the Michael J. Fox Foundation for Parkinson’s Research, the Fox Trial Finder aims to streamline the flow of participants into studies and speed profess toward therapeutic breakthroughs.

The Fox Trial Finder starts with volunteers using an online form to fill out information about themselves while trial teams simultaneously share information about their needs. The Fox Trial Finder compares the information and identifies potential matches. Both volunteers and trial teams can access updated lists of new trials and new volunteers respectively. They can trade messages and learn more about the trial and the volunteer.

Seventy per cent of Fox Trial Finder volunteers are Parkinson’s patients and the rest are healthy volunteers. As someone who does not suffer from Parkinson’s, you can still participate and make a difference.

The Fox Trial Finder’s website asserts that it “opens the door to your opportunity to make a priceless contribution”, because by participating in research, you give something money can’t buy.

This is a good lesson for anyone out there who may hesitate at the opportunity to contribute to a cause they believe in, due to a lack of disposable income. Volunteering your time can be rewarding and in the case of Parkinson’s research, your time may be more valuable than your money.

Thanks for reading,
Ian M. Hull

*Don’t miss a special evening with rock legend Tom Cochrane in support of the Morton & Gloria Shulman Movement Disorders Centre at the Toronto Western Hospital. Set in the fabulous Capital Event Theatre, the event will include an open bar, great food, a silent auction and amazing entertainment. 

The History of Parkinson’s Disease

Descriptions of the symptoms of Parkinson’s disease can be found in Chinese and Indian texts as early as 1000 B.C.E.  It was not until 1817, however, that the disease was first medically described by James Parkinson in an essay on what he called “shaking palsy.”  Following his examination of six patients, three of whom he found on the streets of London, Parkinson offered this description of the disease that was later renamed in his honour:

“Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.”

Reflecting contemporary medical thinking at the time, Parkinson recommended bloodletting at the neck and the insertion of small pieces of cork into deliberately induced blisters.  The aim of these treatments was to divert inflammatory pressure away from the brain and spinal cord. Parkinson believed that the inflammation of the brain and spinal cord was the cause of most neurological disorders. 

Understanding of Parkinson’s disease advanced slowly during the 19th century.  Until the late 1800s, the classification of neurological diseases was imprecise.  Disorders were usually grouped by primary symptoms, such as tremors or weakness.  Thus, Multiple Sclerosis and Parkinson’s  were not distinguished from each other until 1872, when Jean-Martin Charcot published the first major study of Parkinson’s disease. 

Charcot recommended simple rest and relaxation in concert with an anticholinergic plant-based medicine he developed himself.  This medicine helped to modulate dopamine levels in the brain, which is in fact the foundation for modern treatments of Parkinson’s.  Charcot also experimented with some more eccentric treatments.  Below is a drawing of what Charcot called a “fauteuil trepidant” (shaking chair).  Charcot recommended vibratory therapy for Parkinson’s patients based on his observation that these patients exhibited reduced symptoms after long carriage rides. Charcot also experimented with an apparatus that suspended patients by their head, but he later disavowed this treatment because it caused patients an inordinate amount of stress.  Unfortunately, I could not find a drawing of the macabre device. 

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The successful localization of dopamine in 1910 and the discovery of dopamine’s localization in the brain’s striatum in the 1950s allowed for rapid advances in Parkinson’s research.  Since the striatum is concerned with the function of movement, scientists concluded that dopamine levels in the striatum must also affect movement.  Studies demonstrated that Parkinson’s patients had depleted dopamine levels in their brains, establishing a causal link between dopamine levels and the involuntary tremors that are characteristic of Parkinson’s.  In the 1960s, thus, scientists worked to develop Levodopa, which replenishes dopamine levels and which remains central to the treatment of Parkinson’s today. 

Historians of medicine note that Levodopa is a naturally occurring amino acid.  Interestingly, they have found that plants which naturally contain Levodopa were used to treat Parkinson’s-like symptoms long before James Parkinson first described the disease, albeit without the same measure of success as concentrated Levodopa.  This underscores the importance of continuing funding for Parkinson’s research.  It is only with a sophisticated understanding of Parkinson’s disease that quantifiable progress will be made in its treatment. More research means a more refined treatment.

Thank you for reading,
Ian Hull

Sources:
Cold Spring Harb Perspect Med 2011;1:a008862

*Don’t miss a special evening with rock legend Tom Cochrane in support of the Morton & Gloria Shulman Movement Disorders Centre at the Toronto Western Hospital. Set in the fabulous Capital Event Theatre, the event will include an open bar, great food, a silent auction and amazing entertainment.