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 firstname.lastname@example.org.
In 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.
Dr. 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.”
Internationally renowned neuroscientist highlights new developments in Parkinson’s
Dr. J. William Langston, founder, CEO and Scientific Director of the Parkinson’s Institute in Sunnyvale, California addressed a packed banquet hall in Calgary, Friday, January 9th at the 2008 Donald Calne Lecture, hosted by Parkinson Society Canada and Parkinson’s Society of Southern Alberta (PSSA), and sponsored by Solvay Pharma. Dr. Langston brought up to date an audience of over 120, including attendees of the Parkinson Research Alliance meeting, on developments in Parkinson’s.
Earlier in the day, Dr. Langston presented Grand Rounds at Foothills Hospital where he talked about the latest stem cell progress in Japan. Scientists are using skin samples to generate stem cells which could one day lead to the reversal of Parkinson’s.
Special thanks to John Petryshen and his wonderful staff and volunteers at PSSA for all their help in making the event run smoothly.
Developments in Parkinson’s
• PD is very likely a protein folding disease like ALS, Alzheimer’s and Huntington’s
Researchers now know that, in Parkinson’s, the protein, a-synuclein, becomes toxic and destroys the cells when it does not fold properly. “This represents a huge shift in the thinking about PD and makes the area of protein folding an important therapeutic target,” said Langston.
• PD may begin in the olfactory bulb
Dr. Langston noted that loss of smell may occur long before the onset of other symptoms, making the olfactory bulb, which governs the sense of smell, a prime target for investigation. “No matter how many people get Parkinson’s, it usually begins with the loss of the sense of smell but only 60 percent of people realize there is a problem.”
• Environmental factors play an important role in PD
Dr. Langston cited many studies showing a link between the use of pesticides and herbicides and Parkinson’s.
Over 50 published studies show an inverse relationship between PD and smoking, according to Dr. Langston. “If you smoked from the time you were a teenager, your risk of getting Parkinson’s is much less.” However, cigarette smoke has 4,000 chemical compounds, so finding the right one poses its own challenges, he cautioned.
Coffee drinking also seems to reduce the risk of Parkinson’s.
• Genetics loads the gun, but the environment pulls the trigger
Dr. Langston discussed the long-standing debate about genetics versus environment and reviewed the studies of twins, both identical and fraternal which showed that the environment plays a role. “While genetics loads the gun, the environment pulls the trigger,” he said.
New research-gathering techniques
Dr. Langston spoke about using the internet to gather research, citing 23andMe, the company that won Time Magazine’s #1 Invention of the Year award, as one example. 23andMe is embarking on a genome project where you “spit in a cup”, send it to a central location and six weeks later, receive a personalized genome that traces your genetics, where your ancestors came from and whether you will ever be an Olympic sprinter. It also can tell whether you are at risk for Type 2 diabetes and which diseases are high risk for you. This study has the ability to gather massive amounts of population information and could change the future of research.
New California Parkinson’s Registry
California recently passed into law new legislation which calls for all cases of PD to be reported in the State of California. According to Dr. Langston, both patients and doctors wanted this law.
Throughout the day, Dr. Langston made stops at radio, television and print media doing interviews with:
• Breakfast Television, CITY TV, 7:07 am. 6 min. with Dave and Kathy – Dr. Langston Interview • AM 660: Rogers 10 min. with Aaron Burnett
• The Medical Post
• CBC Radio – Wild Rose Country – 1:07 p.m. – 1:15 p.m. The fight against Parkinson’s disease with Host Donna McCelligott
• The Calgary Herald
DVD coming soon
The Donald Calne Lecture was recorded and will be available soon at www.parkinson.ca.
Ottawa school teacher, Shelby Hayter, has been awarded one of Parkinson Society Canada’s highest honours, the Morton Shulman Award, for her determination and creative spirit in piloting a unique educational program aimed at children in elementary schools and for teaching over 10,000 children what it means to live with Parkinson’s.
In the Pass the Baton program, Shelby, who has Young Onset Parkinson’s disease, shares the stage with a medical professional and a researcher from the University of Ottawa Parkinson’s Research Consortium.
“It is a perfect forum to teach our young audiences that we work as a team and together we can make a difference,” says Shelby.
Through the Pass the Baton and Pounding the Pavement programs, Shelby has raised thousands of dollars for Parkinson’s research. She says, “I feel fortunate to have the time, energy and enthusiasm to be an advocate for a disease which seems to have a quiet voice. Many people are not in a position to be advocates, due to personal situations; but for those who are in a position to help out, like myself, it is an amazing process to realize how one person’s efforts CAN make a difference.”
The Morton Shulman Award is given annually to an individual or organization who, through fearless advocacy and an ability to make change, makes life better for Canadians with Parkinson’s and their families.