SuperWalk for Parkinson’s 2009 registration is now open!

SuperWalk Logo 2009

Register Here!

You could win one of two terrific Early Bird prizes!

SuperWalk for Parkinson’s 2009 takes place on Saturday, September 12th and Sunday, September 13th, in over 80 communities across Canada. Join in the excitement as SuperWalk heroes unite to bring Canadians one step closer to a cure for Parkinson’s.

You have made SuperWalk for Parkinson’s Parkinson Society Canada’s largest national fundraising event. It is also at the core of the Society’s efforts in the battle against this debilitating disease that affects more than 100,000 Canadians. Together with you, our goal is to raise over $2.4 million to fund research, education, advocacy and support services for people living with Parkinson’s.

Naturegg is a proud National Sponsor, for a fifth year and Megg, the Naturegg Early Bird is already breaking in her new walking shoes.

Join the Naturegg Early Bird at SuperWalk for Parkinson’s 2009!

Register now  to enter the draw for Early Bird prizes!
· Raise $100 online, by April 30, for a chance to win a $500 Chapters/Indigo gift card
· Raise $250 online, by May 31, for a chance to win a 32″ SHARP AQUOS TV

Note: Winners will be announced on the SuperWalk website. Contest is not open to employees of PSC and its regional partners or to any members of their immediate families.

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Critical Illness Insurance

By Mark Halpern, CFP

Members of the Parkinson community know that a critical illness is a life-altering experience.

That’s why healthy family members, friends and caregivers need to know about Critical Illness Insurance (CI) and why it’s so important to get CI while you are healthy.

CI pays a lump sum, tax free, 30 days after the diagnosis of a covered condition, including Parkinson’s disease.

Coverage can range from $25,000 to $2,000,000. You can use the money for whatever you wish:
– Pay off debts
– Supplement income
– Pay for quicker medical treatment outside of Canada
– Take an extended vacation to improve recovery
– Make alterations to your home that may be necessary because of your new condition
– Just stop working and concentrate on recovery

Almost 2 dozen conditions are covered.

And if you are fortunate enough to stay healthy and never make a claim on your CI policy, your premiums can be returned to you, in full.

If you die while the policy is in force, and you did not receive a CI benefit while you were alive, all the premiums will be refunded to your family/estate in full.

The policies are issued by the largest insurance companies in Canada such as Manulife, Canada Life, RBC, Sunlife and Great West Life.

Visit: www.illnessPROTECTION.com for more information.

Mark Halpern, CFP has been an independent insurance advisor since 1991. Halpern has been recognized by Manulife Financial as the top living benefits advisor in Canada. He advises clients and the media across the country on a variety of insurance products and services. He lectures internationally within the insurance industry and is a sought after speaker for banks, trade associations, corporations and professional groups.

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Message from the editor

Welcome to the latest edition of E Parkinson Post!

We all know how important it is to maintain good relationships with our health care professionals, such as family physicians, specialists and physiotherapists. Whether it’s asking the right questions and getting reassuring answers or knowing how to get an appointment in a timely manner, it helps to know how to navigate the health care system.

This issue is devoted to improving communication with health care professionals. We asked both people with Parkinson’s and health care professionals for their best advice. Larry Peabody, a person with Parkinson’s and someone who has worked in health care, shares his perspective. You’ll also find tips from a neurologist, clinical nurse specialist and physiotherapist, all of whom have lots of experience with Parkinson’s disease.

We’ve also provided articles on other areas of interest and profile Dr. Ami Gupta, a young physician-scientist. Please visit us at www.parkinson.ca for more information.

Comments, questions, and story ideas are always welcome. You can send them to editor@parkinson.ca.

We hope you enjoy.

Marjie Zacks
Editor

editor

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Navigating the healthcare system

By Larry Peabody

Larry PeabodyIn September 2002, my life changed forever. I was 53 years old and enjoying one of those peak experience times in my life. I had just celebrated my daughter’s wedding and returned to my position as senior consultant, Organization Development at the Calgary Health Region, having been seconded to Health Canada as director of the International Health Bureau for the 2002 Kananaskis G8 Summit.

A week later, I plummeted into a dark valley when I heard the neurologist say, “Parkinson’s syndrome,” after hearing the symptoms I had described only moments earlier. That was the day I began a new journey, as a patient, in the same healthcare system I was employed in.

I soon discovered that being a patient was not that different from being an employee, in that there were times when I felt frustrated and powerless in my attempts to make sense of this large, complex and often confusing system of “disconnects”.

During a brief stay in hospital a few months after my diagnosis, I was seen by the on-call neurologist. Since then, he has provided me with excellent care.

Although the healthcare system can be frustrating to navigate, it is becoming more open to innovation, as old ways of thinking and practising give way to new opportunities to improve how we can work together.

In October 2008, I attended one of the Parkinson’s Society of Southern Alberta’s Health Partnership Dialogue events: http://www.parkinsons-society.org/Events2008_HealthCare.aspx. Over 100 people with Parkinson’s disease, family members, friends, and caregivers shared their stories and, with a strengthened collective voice, identified common service gaps and made recommendations for improvements.

They raised issues and offered tips that resonate with my personal experience:

Access to information and psychosocial support at the time of diagnosis
Learning that you have Parkinson’s disease is a frightening and devastating experience that often leaves you in a state of shock and disbelief. Empower yourself by gleaning information from your family physician, local Parkinson Society or Public Health services, the library and web sites. Being informed gave me a sense of control at a time when everything seemed to be out of control.

Taking charge of the medical intervention plan
Choose to not let fear, frustration or denial keep you from getting the best services available to you. Denial initially cushions bad news but, if maintained, it prevents us from using the help we need to manage our Parkinson’s effectively. Be your own advocate or bring a trusted person along to appointments to be an additional listener and to help address issues on your behalf. You don’t have to go it alone, but do go as an informed person.

Clarification of the follow-up plan
Ask questions: What do I need to do? Who do I need to talk with? Where can I go for information and support? When and how often will I see you or another doctor? Write down the questions that are pertinent to you. Remember, there are no wrong questions, when speaking with health care providers. It’s your body and your life!

Getting the real help that YOU need
Don’t be afraid to ask for the specific supports you need. Being diagnosed with Parkinson’s is a life crisis that threatens your emotional stability and may bring to the surface issues that impede your ability to cope with the ongoing challenges. Seek out professionals who can address your emotional, social and spiritual needs. Find out how to access services 24/7 in the event of a crisis, such as, medication reactions, sudden behavioral or cognitive changes that may create anxiety for you and your caregivers.

The time immediately following my diagnosis was one of the most stressful periods in my life. I felt powerless over this disease that threatened to take my life away, piece by piece. I needed hope for my future. I needed to trust my healthcare system and the people it employed. For me, my hope and trust emerges out of my personal faith and the assurance that my family and I will receive the right support and information at the right time, at the right place.

Over time, I have come to realize that my greatest source for hope and trust comes from within. It comes from knowing that I have a responsibility for the effective management of my treatment for me and my family. And that I have a responsibility to speak out, on behalf of those whose voice has been quieted or taken away by Parkinson’s disease leaving them powerless to communicate their needs or concerns about their healthcare experiences.

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Physician-scientist committed to excellent patient care

Dr. Ami GuptaDr. Ami Gupta is young, bright and totally dedicated to making the patient experience a positive one.

At a glance

• Current status: Dr. Ami Gupta is halfway through the first year of a two-year clinical movement disorders fellowship at the Morton and Gloria Shulman Movement Disorders Centre at Toronto Western Hospital.

• Fast Facts: He has a medical degree from the University of Heidelberg, Germany, and a PhD in neurosciences from Harvard University. He recently completed his neurology residency at Johns Hopkins University.

• Achievements: He was awarded the Novartis Pharmaceuticals Canada Clinical Movement Disorders Fellowship in November 2008 through Parkinson Society Canada’s National Research Program.

• Quick quote: “The difference between a physician-scientist and a family doctor is that the physician-scientist not only thinks about issues that affect patients but also follows that up with research.”

Dr. Ami Gupta’s love of mysteries and keen appreciation of “the beauty of the brain” make him ideally suited to studying and treating movement disorders.

Dr. Gupta, 38, is a physician at the Movement Disorders Centre in Toronto, where he is developing specialized expertise in diagnosing and treating movement disorders, under the supervision of Dr. Anthony Lang.

He is also a scientist with a background in basic science research conducted in the lab.

Now, he is adding clinical research to his portfolio, embarking on two research projects:  one, looking at MRI-supported diagnosis in Multiple System Atrophy (MSA); the other, investigating cognition problems also in MSA, which is a disorder similar to Parkinson’s disease. It’s part of his bid to gain a deeper understanding of movement disorders and develop better ways to treat them.

In the few short months, since he began seeing patients at the Movement Disorders Centre, two days a week, Dr. Gupta has been surprised to learn that many of his Parkinson’s patients find their non-motor symptoms to be the most troublesome. “People tell me, ‘doctor, if you could help improve my sleep and my thinking that would be so much more potent than making me a little bit faster.’”

It’s an insight he may never have picked up had he continued working solely in the lab. His one-on-one relationship with patients has opened his eyes to new research possibilities.

“My perspective has become, what can I do to translate the knowledge I gain from research into something that can help Mr. or Mrs. Smith?”

When his clinical fellowship ends in June 2010, Dr. Gupta expects to carve out a career of continuing to provide excellent patient care. He’s just not sure yet whether he will combine his physician duties with clinical research or basic research.

Whatever his decision, it can only work to the benefit of his patients because, by then, he will have had the advantage of seeing what movement disorders look like in day-to-day life and he will have a vested interest in addressing the kinds of research questions that people with the lived experience of movement disorders want to have answered.

“Having trained in neurology and neuroscience, and worked at the interface of science and patient care, I will actually be able to do research based on what I have observed in the clinic.”

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