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

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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. 

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. 

Parkinson’s and Depression

For people with Parkinson’s, depression is quite common and disabling—and it is the symptom most often overlooked. Up to 60 percent of people with Parkinson’s experience mild or moderate depressive symptoms. In fact, research suggests that the disease itself causes chemical changes in the brain that may lead to depression.

Parkinson’s affects many parts of the brain that are important in controlling mood. One of these is the area that produces serotonin, a brain chemical implicated in depression. Another part of the brain important in regulating mood—the frontal lobe—is known to be under-active in Parkinson’s. Commonly prescribed antidepressants can help. In addition to medications, cognitive-behavioral therapy has also been shown to help some people with Parkinson’s.

Other researchers have found that people with Parkinson’s who were depressed had more trouble with daily activities, and were more likely to begin medication for motor symptoms sooner than those without depressive symptoms. Depression decreased their quality of life and made their motor symptoms worse—but treating the depression, rather than the motor symptoms, improved both quality of life and movement. If you feel you are doing very poorly, yet your doctor finds only mild physical impairments during your exam, you may be depressed. Depression can range from feelings of sadness and discouragement to extreme hopelessness. These feelings generally are different from the grief and frustration you may feel as a result of your diagnosis.

Excerpt from the Parkinson’s Disease Foundation website

Help support Parkinson’s research by donating or buying a ticket to Shake It up For Parkinson’s – a fundraiser that is taking place in Toronto, Canada on September 6, 2013.

*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. 

Experiencing Parkinson’s from a Family Member’s Perspective.

I’m not a doctor. I don’t even like science.

I don’t understand what causes Parkinson’s but I know both my parents have it.

Here are some of my observations about the disease.

1. The most noticeable symptom is a shaking in the hand and/or arm.

2. Over time my parent’s balance has deteriorated. The risk of falling will increase over time and we need to be mindful of ice and other slippery conditions. Climbing stairs can be a problem especially if there is no handrail.

3. Parkinson’s causing facial masking which means there is less facial expression. I have learned that this does not mean my parents are any less emotional. It just means their face muscles are not working as well.

4. Parkinson’s has caused my mom to speak very quietly. She needs speech therapy. I have had to learn to talk to her in a more quiet environment which may mean turning off the radio or the TV.

5. It takes longer for my mom to translate a thought into speech. I know she has something to say; I just takes her longer to say it. I have had to learn to be more patient. I know the same thing will happen with physical movements. It will start taking her longer and longer for her brain to convince her legs to move.

6. It is increasingly difficult for my mom to swallow. This is a problem because she takes a lot of pills every day. She has to learn how to swallow property; otherwise, food will go into her lungs instead of her stomach causing pneumonia.

7. Parkinson’s is a degenerative disease. At the moment there is no cure. But one can slow the progress by doing things like exercise – tai chi and golf are good – and eating a proper diet. Both my parents have lived with Parkinson’s for a long time. Luckily, it has progressed relatively slowly.

I understand that with additional research a cure for Parkinson’s is not far off. That is why I am supporting the Shake it Up for Parkinson’s fundraiser that is taking place at the Capital Event Theater in Toronto on September 6, 2013.

Doug MacLeod, MacLeod Law Firm

To make a donation or buy ticket to http://www.tgwhf.ca/sites/shakeitup/donate.asp