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. 

Caring for Someone With Parkinson’s

Considerable amounts of energy and money are expended each year researching the causes of Parkinson’s disease and how best to treat it.  It is surprising, therefore, that very few studies have been undertaken on how living with someone who has Parkinson’s affects the primary caregiver.  As one 2012 Australian study notes, “little is known about health-related quality of life in people with Parkinson’s disease and their caregivers…or of the level of strain experienced by family caregivers of people with Parkinson’s disease.” This is especially shocking considering how much money is spent on informal caregivers.  In Australia $30 billion is spent annually and in the United States that figure is estimated to be as high as $375 billion.[1]

Caring for someone with Parkinson’s disease is complex and time-intensive.  As Cotton P. Heisters notes in Nursing Times, caring for someone with Parkinson’s disease requires “a high level of autonomy, clinical judgement, discretion and decision-making…”  The enormity of the task can place strain on care-givers and family members.  As the 2012 Australian study documents, “People providing care for others with advanced PD [Parkinson’s disease] have demonstrated an increased incidence of depression, diminished quality of life, reduced economic circumstances and reduced physical and mental health.”  Research has shown a correlation between the quality of life experienced by the person with Parkinson’s disease and their care-giver: the more sever the Parkinson’s, the lower the quality of life for both. 

Interestingly, this relationship seems to work both ways.  When steps are taken to ameliorate the quality of life for the care-giver, the patient’s quality of life, curiously, can improve as well.  If you know someone who is suffering from Parkinson’s disease, understand that helping their care-giver, either by assuming some of the responsibility for caring for them or by other means, can not only improve the care-giver’s quality of life, but also the patient’s.

Thank you for reading,
Ian Hull

Sources

http://www.nursingtimes.net/nursing-practice/clinical-zones/neurology/how-to-care-for-people-with-parkinsons-disease/5043746.article

Kelly et al. BMC Neurology 2012, 12:57 http:www.biomedcentral.com/1471-2377/12/57

 

The Main Event…

 Approximately 100,000 Canadians suffer from Parkinson’s but the disease affects many more because of its profound consequences for relatives of those with Parkinson’s.  In addition, incidence of Parkinson’s is expected to rise because it is primarily found in the elderly, and Canada’s population is rapidly aging. That is why it is so important to support research into the disease.  Please join us on Friday, September 6, 2013 for an evening in support of Parkinson’s research and treatment at the Capitol Event Theatre, located at 2492 Yonge Street, Toronto.  All proceeds from the event will be donated to the Morton & Gloria Shulman Movement Disorders Centre at the Toronto Western Hospital.  Led by Dr. Anthony Lang, the centre makes outstanding contributions to the field of Parkinson’s research.

2

The event will feature live performances by Tom Cochrane and Dala & Marc Jordan.  A prolific Canadian artist, Tom Cochrane authored such hits as “Lunatic Fringe” and “Life is a Highway,” both of which continue to receive airplay on popular radio stations.  Tom’s most recent single, “Just Like Ali,” is about his father, who suffered from Parkinson’s.  You can purchase the album on which the single appears here.  All proceeds from the song support Parkinson’s research.

Included in the price of the ticket are great food and an open bar.  A silent auction will also take place.  You can purchase your ticket here or make a donation here.  We hope to see you there!

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. 

Image

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. 

 

10 Facts About Parkinson’s

This is the first in a series of blogs intended to increase your understanding of Parkinson’s disease.  The blogs are also aimed at promoting Shake It Up For Parkinson’s, an evening devoted to raising funds for Parkinson’s research and treatment.

Ten facts about Parkinson’s disease:

  1. It is not contagious.
  2. It can make one a better dishwasher. 
  3. It does not make one a better dancer.
  4. One can still feel an earthquake.
  5. It makes one better looking.
  6. It does not necessarily make one a better lover.
  7. It causes people to stare in awe not in wonder.
  8. Velcro is fashionable.
  9. Contact lenses are not recommended.
  10. Sympathy makes the disease worse.

 

Now, ten REAL facts about Parkinson’s disease:

  1. Parkinson’s disease is named after Dr. James Parkinson (1755-1824), the doctor that first identified the condition.
  2. It is caused by the loss of brain cells (neurons) in a part of the brain called the substantia nigra, which produces the chemical messenger dopamine.  As the cells die, less dopamine is produced and transported to the striatum, the area of the brain that co-ordinates movement. Symptoms develop when about 80% of dopamine has been lost.
  3. The reason that Parkinson’s disease develops is not known.
  4. Approximately 4 million people worldwide suffer from Parkinson’s disease. 
  5. The main symptoms of Parkinson’s disease are tremor, slowness of movement (bradykinesia) and muscle stiffness or rigidity.
  6. The National Institute for Health and Clinical Excellence (in the UK) published guidance on the treatment of Parkinson’s disease in June 2006.
  7. There is no cure for Parkinson’s disease, but treatments can help control the symptoms and maintain quality of life.
  8. Parkinson’s disease can be treated with a combination of drug treatments and other therapies.
  9. The risk of developing Parkinson’s disease increases with age.  Symptoms usually occur after the age of 50.
  10. Around 1 in 20 people are diagnosed under the age of 40 years.

 

Source: Orion Pharma (UK) Ltd., “10 facts about Parkinson’s disease” (Updated March 26, 2010). http://www.orionpharma.co.uk/Products-and-Services-Orion/Parkinsons-disease/10-facts-about-Parkinsons-disease.

*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.