About shakeitup4parkinsons

Don't miss this 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 Capitol Event Theatre, the event will include an open bar, great food, a silent auction and amazing entertainment. Bring family and friends and have a wonderful time in support of a great cause!

Why We Are Supporting the Morton & Gloria Shulman Movement Disorders Centre: Patient Testimonial

I was diagnosed with Parkinson’s in 2001.  As the disease progressed, I found myself going from one neurologist to the next.  I was totally dissatisfied with my treatment.  My symptoms eventually progressed to the point where I could no longer walk when my medication had worn off.  Desperate, I even tried naturopathic treatments; the practitioners claimed they could cure the condition.  Finally, someone at another hospital recommended that I contact the Morton & Gloria Shulman Movement Disorders Centre at Toronto Western Hospital.

Upon arriving at the Centre for the first time, I was greeted by a caring and professional staff.  I have been very satisfied with my treatment.  At one point, it was suggested to me that I might be a candidate for deep brain stimulation (DBS) surgery. This is an operation where wires are placed into the brain and are connected to a battery pack or neurostimulator in the chest area.  I went for it.  The surgery took nearly seven hours – I was awake the whole time!  My surgery was a little different; I have two battery packs, one on each side of my chest.

DBS has changed my life.  My arms and legs function as before.  I can walk all day; I can even run again.  I can travel on public transit without falling.  It has been almost three years since I had DBS surgery.  I continue to go to the Centre twice a year.  I am very thankful to the all the staff at the Centre for their continuing care and support.

Sam Nassar
Patient
Morton & Gloria Shulman Movement Disorders Centre

*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. 

Advertisements

Why We are Supporting the Morton & Gloria Shulman Movement Disorders Centre, Part III: Dr. Anthony Strafella

The Morton & Gloria Shulman Movement Disorders Centre is a world leader in Parkinson’s research.  This was recently confirmed when the Parkinson’s Disease Foundation (PDF) announced that it would fund a research project by one of the Centre’s scientists, Dr. Antonio Strafella.  Based in New York, PDF funds promising scientific research around the globe.  Its research goals include revealing the cause(s) of Parkinson’s disease, advancing therapies, and finding a cure.

Dr. Strafella is a neurologist with expertise in movement disorders and functional brain imaging.  His studies focus on investigating the pathophysiology of motor, cognitive and behavioral symptoms in Parkinson’s disease.  His latest project, “Imaging Impulsive Control Disorders in PD,” follows this pattern.  The abstract for his research project reads:

Some people who take dopamine agonists to treat motor symptoms of Parkinson’s disease (PD) develop side effects such as compulsive eating, gambling, shopping, or sexual activity. Together, these side effects are called impulse control disorders (ICDs). Scientists suspect that dopamine agonists may change the way some people’s brains perceive risks and rewards. As a result, some people who take dopamine agonists may have trouble controlling harmful behaviors that produce temporary feelings of pleasure or “highs.” We plan to use a type of brain scan – positron emission tomography (PET) scanning – to examine the brains of people with PD, with and without ICDs. Each participant will be injected with a small amount of a radioactive “tracer” that will allow us to observe dopamine levels in the brain. By comparing the scans of people with PD who suffer from ICDs to scans of people with PD who do not have an ICD, we may be able to determine brain differences that cause some people to develop ICDs. Understanding these differences may help better diagnose and treat ICDs in people with PD.

In its media release announcing the funding, PDF quoted its President, Robin Anthony Elliott, as follows:

By supporting these 14 talented scientists, PDF is ensuring that a special few daring ideas will not be left on a laboratory bookshelf.  Instead, they will be explored for their potential to improve the lives and futures of the people who live with Parkinson’s…

We applaud Dr. Strafella and the rest of the team at the Morton & Gloria Shulman Movement Disorders Centre who have dedicated their professional lives to improving the lives of their patients.

Harry McMurtry
Chair
Shake It Up for Parkinson’s

*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. 

An Unusual Twist of Fate

Lloyd and Heather MacLeod have been married for almost 57 years. In an unusual twist of fate, both of them have Parkinson’s disease.

Lloyd recently helped organize a golf tournament where they raised over $150,000 for Parkinson’s research.

Lloyd and Heather are pleased to support the Shake It Up for Parkinson’s fundraiser that is taking place at the Capitol Event Theater on September 6, 2013.

To help people better understand Parkinson’s, Lloyd and Heather agreed to answer a few questions.

1. What were your first Parkinson’s symptoms?

Heather – Trembling in one finger and then in the left hand.

Lloyd – Trembling in my right hand. In that Heather already had the sickness, I diagnosed myself before I went to my doctor.

2. When were you first diagnosed with Parkinson’s?

Heather – In the fall of 1998.

Lloyd – Twelve years ago when I was 74 years old.

3. How has Parkinson’s affected your day-to-day activities?

Heather – I have had to cancel many of my social activities. [Note: As Parkinson’s progresses, voice level can reduce significantly making it difficult for others to hear the person. Heather’s voice is very weak.]

Lloyd – Not greatly as yet but I am gradually getting stiffer and I get tired more quickly than I did prior to getting the sickness.

4. Is there anything you can do to slow the progression of the disease?

Heather – Regular exercise is probably the most important as well as working with a speech specialist to help with keeping your voice strong.

Lloyd – I think it is important to keep exercising. I also think you should be on a diet.

5. In your opinion, what is the main misconception about Parkinson’s?

Heather – The sickness is not well understood by the general public in spite of the fact several celebrities have had the sickness. Most people think of people with PD as being shaky and not able to do much.

Lloyd – PD is not well understood by the general public or the medical profession except doctors who specialize in the sickness. When I told my MD I thought I had PD he said, well, its not affecting your life style, so you should just forget about it until such time that it becomes a problem and then we can do something about it. Of course, this is not what should happen and you should have treatment immediately.

*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. 

Adam van Koeverden Speaks Up for Parkinson’s Disease

Image

Strength, endurance and determination are all prerequisites for competing at an international level in an Olympic kayak race. These same qualities are also needed when faced with a family member having been recently diagnosed with Parkinson’s Disease.

Adam van Koeverden, born January 29, 1982, is a record-breaking Canadian sprint kayaker who unfortunately learned his father must now battle this long-term affliction.

Since 2003, Adam has achieved worldwide recognition after receiving the Silver Medal in the Gainsville, Florida’s World Cup K-1 1,000 metre race. Only a year later, Adam took home  the Gold Medal for Canada at the 2004 Athens Olympic Games. Now with his four Olympic medals, two World Championship Titles and collection of World Cups, Adam’s next challenge will be spreading the word about the heart-breaking disease and uphill battle his father now faces.

Without knowing the cause of Parkinson’s Disease, and with no cure in sight, there is a substantial need for medical research funding aimed at combatting this affliction. Decades of research have shown that Parkinson’s Disease may be caused a combination of genetic and environmental factors, but this theory, and the evidence supporting it, are vague and indefinite.

Many foundations dedicated to combatting this disease have been created; however, in order to make headway, greater community support is needed in order to alleviate the effects of this disease, and hopefully, one day, find a cure for the millions of people suffering from Parkinson’s Disease today.

On September 6, 2013, Adam will be joining us at the Capitol Event Theatre. Proceeds from the event will be donated to the Morton & Gloria Shulman Movement Disorders Centre at the Toronto Western Hospital.

Everyone is invited to join Adam and other special guests, including rock legend Tom Cochrane, for a night of great food, drinks, provided by an open bar, and amazing entertainment. Hope to see you there!

*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. 

Smile Or Go To Jail!

Many spectators enjoy watching a good cycling race, especially when it is at the Olympic Games. Now, however, the level of enjoyment has been set to a high standard by the Surrey police. Mark Worsfold, 54, did not meet that bar when he was consequently thrown to the ground, handcuffed and brought to the police station where he was charged with breach of the peace. He was allegedly in breach of the peace because he did not support a smile while observing the Olympic Games. Unfortunately, Worsfold is not capable of displaying a smile or a frown on his face since his ill-fated diagnosis of Parkinson’s disease in 2010.

Worsfold is a former soldier and a martial arts instructor who has a range of symptoms that vary almost hourly. Like most Parkinson’s patients, Worsfold’s struggles can be seen in his facial expressions, or lack thereof. The muscle rigidity in his face affects his ability to control how he would like to express himself. Although Worsfold was most likely enjoying the race, he can easily be perceived as having a hostile appearance.

Whether there was an absence of compassion, a chronic misunderstanding or simply plain ignorance, this is the type of treatment that patients with Parkinson’s disease have to suffer through each day. Raising awareness of this life-altering disease will help reduce the amount of assumptions that many sufferers face – whether the assumption be that they are publicly intoxicated or planning to attack athletes during Olympic events. A more empathetic approach needs to be practiced and what better way to start than to have a party to kick it off. “Shake It Up For Parkinson’s” will bring awareness and education to the community. Individuals with Parkinson’s disease should be welcomed in the community and at public events, rather than have to face the assumptions thrown at them each day.

Hope to see you there!

*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. 

 

Parkinson’s Disease: Dyskinesia Versus Tremor

As someone with Parkinson’s disease, I am accustomed to people mistaking dyskinesia for tremor. It is very common for people to confuse one with the other. After all, both are a form of shaking. However, dyskinesia is a side effect of drug therapy for Parkinson’s, while tremor is the most common symptom of the disease. I want to highlight the differences to enhance the reader’s understanding of Parkinson’s disease and its manifestations. It helps us if you know what you are seeing.

Parkinson’s Disease

Parkinson’s disease is a slowly progressive neurodegenerative illness characterized by: tremor, stiffness (rigidity), slowness of movement (bradykinesia) and difficulty with balance (postural instability). The symptoms appear when there is not enough dopamine in the brain. Dopamine is a naturally-occurring chemical (neurotransmitter) that allows nerve cells to transmit messages between each other and then to muscles to allow normal movement to take place. In Parkinson’s disease, for reasons not yet understood, many of these cells have died. The remaining cells cannot produce enough dopamine.[1]

Levodopa, also called L-dopa, is the most common and effective drug used to treat Parkinson’s disease. It replaces dopamine in the brain. It is most effective against rigidity and slowness. It produces less benefit for tremor.

Dyskinesia

Dyskinesia is a distortion or impairment of voluntary movement. The person is unable to control muscle movement. It often occurs as a side effect of long-term therapy with levodopa. Dyskinetic movements look like smooth tics — sometimes like an uncoordinated dance.[2] They include writhing and twisting movements. Levodopa-induced dyskinesia is evident in people with Parkinson’s disease who have been on levodopa for prolonged periods of time.[3]

Dyskinesia only occurs when the person’s levodopa is at optimum levels (peak-dose dyskinesia) or during the so-called “on” phase of levodopa therapy. It dissipates as levodopa levels in the brain drop.

Tremor

Tremor is also an involuntary movement. But it is characterized by a rhythmic shaking or vibrating movement. A resting tremor is found in a majority of persons with Parkinson’s disease. It normally starts in one hand and is most prominent when the hand is resting and relaxed. Over time it often travels to the opposite hand or to the leg on the same side of the body.[4] Tremor does not respond well to levodopa therapy.

Does the Distinction Matter?

The tendency is for casual observers to equate limited involuntary movements with the disease being less present.  It is normally the opposite. In my case, I experience dyskinesia every day; I rarely have a tremor. But dyskinesia is the most obvious outward sign of the disease since most of my symptoms (rigidity, slowed movement and poor balance as well as non-motor symptoms) are invisible to the untrained eye. In other words, lack of movement is not the same as feeling well. Anecdotally, when I see a friend with Parkinson’s go still, it is rarely a good thing. It is why we call it being “off”. I suppose the danger is in assuming “wellness” when the better course is to ask or ignore our condition altogether. There is no harm in saying nothing.

Harry McMurtry
Event Chair
Shake It Up for Parkinson’s

Tom Cochrane Live and In Person!

Love to rock out on air guitar to Canada’s most classic tune? Heck, what self-respecting Canuck doesn’t?

The once-in-a-lifetime chance to let loose with the man behind the iconic rock anthem “Life is a Highway” is coming to Toronto next month, at a fundraiser to benefit the Morton & Gloria Shulman Movement Disorders Centre. The exclusive event is headlined by Tom Cochrane, who will perform as part of the Shake It Up For Parkinson’s fundraiser. Proceeds for the event go to benefit research into the neurodegenetive disease.

Cochrane will be one of hundreds present at the fundraiser to help build better lives and brighter futures for Canadians living with Parkinson’s. To prepare guests for what guarantees to be an unforgettable night, we share ten facts about Cochrane to leave you inspired for more.

  1. Tom’s 1991 album Mad Mad World topped six million sales worldwide.
  2. Tom’s father had Parkinson’s disease and Tom is dedicated to research to explore treatments and cures. Proceeds from his 2002 single Just Like Ali fund Parkinson’s research.
  3. Tom holds the highest honour for a Canadian citizen, the Order of Canada.
  4. Tom purchased his first guitar at age 11, funding his purchase by selling a toy train set.
  5. Tom holds his very own key to the City of Winnipeg.
  6. Tom has been inducted onto Canada’s Walk of Fame with some great company. The same year, Sex and the City actress Kim Cattrell and children’s author Robert Munsch were also inducted.
  7. Tom has received seven Juno’s over the course of his career.
  8. Well known for his story-telling skills, Tom is nicknamed the “Thinking Man’s Rocker”.
  9. Tom was awarded the Allan Waters Humanitarian Award in recognition of his      extensive charitable efforts.
  10. Tom has a pilot’s licence and enjoys flying his very own float plane.

To learn more about the living legend, come to the Capitol Theatre for the Shake It Up for Parkinson’s event. We hope to see you there. Make sure to bring your finest air guitar skills!

Thanks for reading,

Genevieve Giroday

Sources:
http://www.tomcochrane.info/main.php
http://www.tomcochrane.com/

*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.