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. 

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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. 

Adam van Koeverden Speaks Up for Parkinson’s Disease

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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. 

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

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. 

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