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. 

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. 

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. 

 

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.