Advocacy

Yvon Trepanier
Yvon Trepanier

By Yvon Trepanier,
Chair, National Advocacy Committee

Effective advocacy – a balancing act

Effective advocacy is a balancing act involving many people and three key activities: lobbying, use of media, and grass-roots action. Each appeals to different audiences and requires careful thought and planning to ensure coordinated effort and maximum impact.

Lobbying is activity aimed directly at policy makers with the objective of influencing their decision-making. This function is undertaken by an organization and involves communicating with elected politicians, political staff, and bureaucrats. In the case of Parkinson Society Canada, senior staff and volunteers work together to lobby the Government of Canada, Members of Parliament and the Senate, and staff within the federal bureaucracy for investment and policy change relevant to the Canadian Parkinson’s community.

Media profile is noticed by government decision-makers and offers much-needed support to the lobbying effort. At the same time, large portions of the community become informed about, and potentially engaged in, the issue. Organizations generate media coverage, but so, too, can local stakeholder groups and individuals. Letters to the Editor are a very effective way to get messages out – and can be done in a coordinated, strategic manner so we have visibility in a community or national paper.

Grass-roots advocacy action is essential to raising the profile of issues on a large scale. It brings the voice of individuals to the forefront and allows elected politicians to hear directly from their constituents. Grass-roots action reinforces the messages communicated by the organization and brings the issue to life in real terms through personal experience. When well coordinated, grass-roots campaigns facilitate communication with all elected representatives at the same time, thereby creating a buzz about a specific issue at a specific time.

Parkinson Society Canada has an active National Advocacy Committee made up of volunteers and staff. This committee works to ensure that our approach to advocacy is balanced and offers opportunities for everyone to get involved. To date, our national network of grass-roots advocates covers over 100 ridings. Our goal is to have at least one volunteer in each of the 308 ridings across Canada so we need your help. To learn how you can lend your support to this effort, visit the PSC Advocacy Café.

News Releases – June 5, 2009

► Government of Canada Announces First-ever National Study on Neurological Diseases

► Health Charities Applaud Government of Canada’s Research Investment in Neurological Conditions

► Joyce Gordon, Chair, Neurological Health Charities Canada: Response to Ministerial Announcement of $15 million to fund 4-year national population-based study of neurological conditions in Canada

Back Row:  Patrick Brown, MP Barrie; Femma Norton, Canadian Alliance of Brain Tumor Organizations; Tim Irwin, Huntington Society of Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Rosie Wartecker, Tourette Syndrome Foundation Canada; Janet MacMaster, March of Dimes Canada; Diane Gillespie, Dystonia Medical Research Foundation Canada; Yves Savoie, MS Society of Canada; Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Debbie Bezenkowski, Alzheimer Society of Canada.  Front Row: Catherine Sherrard, Muscular Dystrophy Canada; The Honourable Leona Aglukkaq, Minister of Health for Canada; Bobbi Greenberg, ALS Society of Canada; Inez Jabalpurwala, NeuroScience Canada; Joyce Gordon, Parkinson Society Canada.
Back Row (left to right): Patrick Brown, MP Barrie; Femma Norton, Canadian Alliance of Brain Tumor Organizations; Tim Irwin, Huntington Society of Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Rosie Wartecker, Tourette Syndrome Foundation Canada; Janet MacMaster, March of Dimes Canada; Diane Gillespie, Dystonia Medical Research Foundation Canada; Yves Savoie, MS Society of Canada; Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Debbie Bezenkowski, Alzheimer Society of Canada. Front Row: Catherine Sherrard, Muscular Dystrophy Canada; The Honourable Leona Aglukkaq, Minister of Health for Canada; Bobbi Greenberg, ALS Society of Canada; Inez Jabalpurwala, NeuroScience Canada; Joyce Gordon, Parkinson Society Canada.
Joyce Gordon, President & CEO of Parkinson Society Canada with The Honourable Leona Aglukkaq, Minister of Health for Canada
The Honourable Leona Aglukkaq, Minister of Health for Canada (left) and Joyce Gordon, President & CEO of Parkinson Society Canada

comments

First Person

Staying engaged
By Marc Bellefeuille

As 2006 was drawing to a close, I noticed that something was not right, especially when I was running. I have always tried to keep in shape with a core set of activities – running, hockey, cross-country skiing and cycling. In fact, sports are an important part of my socializing with friends. So when I started a new job, in early 2007, I was thrilled to discover that some of my colleagues also enjoyed running.

However, when we went running at lunchtime, a few times a week, I began hiding the fact that my leg would get stiff barely seven minutes into our run. And on the way back to the office, I often tried to conceal that I was limping. In addition to these subtle physical changes, I found it increasingly difficult to keep up with conversations in social and business settings.

In my bid to find out what was going on, I went to a physiotherapist, a chiropractor and finally to my family doctor who sent me down the path of X-rays and MRIs, all of which came back negative. Then, in October 2007, I had an appointment with an EMG specialist* who referred me to Dr. David Grimes at The Ottawa Hospital. In November 2007, at the age of 45, I was diagnosed with Parkinson’s disease.

My first reaction was a kind of denial. I kept searching the Internet to see if anything else could be causing my symptoms, until someone said to me, “What if it is some other disease, what will you do then?” That brought me back to accepting the diagnosis.

I attended my first Parkinson’s support group meeting in January 2008, and introduced myself, uncertain of what to say, but I listened to the discussions. By the next meeting, I had the perfect intro. My wife, Tracy, had pointed out similarities between Michael J. Fox and our family: aside from the Parkinson’s connection, our wives have the same name, our teenaged sons have the same names and we each have a set of twin daughters. The parallels served me well when I made a presentation at the recent Perspectives on Parkinson’s event in Ottawa.

In retrospect, 2008 was a year of adjustments, as I finally settled in with a stable cocktail of medications and overcame the challenge of sharing my diagnosis with family and friends.

My family keeps moving forward, with the support of new friends with Parkinson’s and the core set of friends we socialize with regularly. Tracy and I have even tried something new – ballroom dancing! In May 2009, our family participated in the Ottawa Race weekend, a 5-kilometre race where, with the help of friends, we raised money for Partners Investing in Parkinson’s Research.

Throughout it all, I remind myself of the importance of staying engaged. My work in the field of information technology is a key part of that. I consider myself lucky that I can still do many of the things I did five years ago, albeit, in a more adaptive way. Some days, I find it difficult to get going, but then I remember a friend’s advice and vow not to let this disease define who I am.

(*An EMG specialist uses an electromyograph, a complex apparatus for nerve and muscle testing.)

Marc Bellefeuille and family at the 2009 Ottawa Race Weekend, raising funds for Parkinson's research
Marc Bellefeuille and family at the 2009 Ottawa Race Weekend, raising funds for Parkinson's research

comments

Ask the expert

Neera Garga, B.Sc., PT is a consultant physiotherapist with Parkinson Society of Southern Alberta
Neera Garga, B.Sc., PT is a consultant physiotherapist with Parkinson's Society of Southern Alberta

Balance and mobility in Parkinson’s
Neera Garga, B.Sc., P.T.
Consultant Physiotherapist, Parkinson’s  Society of Southern Alberta

Why does balance become more of a problem with age?

As we get older, we stop exploring our environments the way we did as kids. For instance, we don’t do headstands or ride on swings. But those are activities that force the brain to integrate various kinds of information; so, when kids stumble, it’s easy for them to regain their balance. However, when an adult trips, the influx of information can overload the brain and the adult loses balance.

Does this mean the difficulty of recovering from a stumble isn’t necessarily a mechanical problem?

It isn’t. It happens because the brain hasn’t incorporated information fast enough to respond appropriately.

How can physiotherapy help improve balance and mobility in Parkinson’s?

People with Parkinson’s and other neurological conditions causing weakness or postural changes are often forced to move in limited ways. Once that happens, it becomes hard for them to explore other types of movements and, if left on their own, many never will. A physiotherapist can recommend exercises that force the body and brain to experience different scenarios that people would never put themselves into. The physiotherapist can also help people retrain their brains to respond more quickly when their balance is disturbed.

How does this balance retraining work?

Balance is a beautiful relationship between
• the visual system, which takes in information through the eyes;
• the proprioceptive system, which takes information from the receptors in your joints and tells your brain if you’re in alignment or out of alignment; and
• the vestibular system, which is located in the inner ear and takes into account head and eye position.

Because vision usually takes precedence, most people have underused one or both of the other systems. However, if you can improve the use of the idle systems, you can achieve some good results.

Try this simple exercise. Stand in front of a counter, rest your hands lightly on the counter and close your eyes. How do you stay on your feet and not wobble? Well, your proprioceptive system kicks in. If you’re out of alignment, it signals the brain which then alerts the muscles to pull you back into alignment. Your vision isn’t doing its usual bossy job, so these other systems have to pick up the slack.

When people with Parkinson’s do this type of exercise regularly, then, the next time they encounter a slight disturbance in their balance or get nudged or trip on the curb, their proprioceptor-brain-muscle pathways are likely to respond sooner because people have had practice integrating the different strands of information.

How does physiotherapy help with posture?

Over time, many people with Parkinson’s develop a stooped posture where their centre of gravity falls in front of the body rather than over the feet. A good physiotherapy routine will include both exercises to strengthen the muscles along the back and counterbalance the tendency to be pulled forward, and exercises to stretch the muscles along the front of the body which tend to contract when a person becomes stooped.

How much exercise is enough?

Set realistic goals. A consistent 20 minutes of exercise a day is worth more than an occasional 45-minute spurt. In fact, exercise should be seen as a Parkinson’s disease management strategy. It can make a big improvement to quality of life, balance and walking; but if you don’t keep it up, you lose all the benefits. Some of my clients say that exercise empowers them with some sense of control over their disease.

What should a person with Parkinson’s look for in a physiotherapist?

If looking for a physiotherapist, ask the clinic how skilled or experienced the physiotherapist is with Parkinson’s disease.

comments

Taking a trip

Careful planning can make travel away from home easier. Try the following suggestions to minimize problems and enhance the quality of your time away.

• Never leave the house without a day’s supply of medication
• Keep a few extra tablets in a labeled container in the glove compartment of the car.
• Use a small shoulder bag or fanny pack and keep it stocked at all times with crackers or cookies and a mini-juice carton so you can take your medication. Take this bag with you even if you think you may be out for only a short time.
• Carry a card in your wallet listing the medications you are taking.
• If you are driving, plan frequent stops for exercise and rest.

<strong>When traveling by plane</strong>

• Take advantage of early boarding privileges.
• Check in early and request an aisle seat close to the washrooms if mobility is a problem.
• Even if you don’t normally require assistance to walk, you may want to consider using a wheelchair or an electric cart in the airport. It may be easier for your escort to push you rather than carry hand luggage and help you to walk at the same time.
• During flights where a time change is involved, take medications, as needed, keeping to the same number of hours between doses.
• If necessary, adjust medications to ensure mobility at the beginning and end of the flight.
• Take all your medication for your entire trip in your hand baggage. Checked baggage lost enroute or flight delays may leave you without enough medication.
• Wear comfortable clothing and shoes.
• Use a small soft neck pillow to increase your comfort on a long trip.
• Try to rest both the day before you leave and the day after you arrive.
• Drink extra fluids the day before and after you travel. This will allow you to drink less on the travel day and reduce visits to the washroom.
• When travelling for extended periods of time ask your physician if he/she can recommend a neurologist in the place you are visiting, in case you need to see a doctor quickly.
• When travelling out of the country, make sure you have enough medical insurance coverage.

*An excerpt taken from <em>A Manual for People Living with Parkinson’s Disease, Parkinson Society Canada, 2003</em>. To request a copy (free of charge), contact <a href=”mailto:general.info@parkinson.ca”>general.info@parkinson.ca</a>.

<strong>This site also offers useful information and travel tips:</strong>

<a href=”http://www.cta-otc.gc.ca/themes.php?aid=2〈=eng” target=”_blank”>• Persons with Disabilities – Canadian Transportation Agency</a>

<a href=”http://www.viarail.ca/planificateur/en_plan_beso_acco.html” target=”_blank”></a>

comments