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PARTNERS

MEET OUR PARTNERS WITH PARKINSON'S

Hear their stories and find inspiration in participating alongside someone just like you, living their dreams and seeking to make a difference for Canadians living with Parkinson's. You and our partners share your life lists dream.

OUR VIRTUAL PARTNERS WITH PARKINSON'S

Jamie Fobert

Belleville, Ontario
47 years old
Diagnosed June 30th 2010, 10:20 a.m.

Approaches Parkinson’s with inner strength

 

My Story

Jamie joined our 2016 Life Lists Challenge participants for a once in a lifetime day at the track, remarking "this is the best day of my life!" Watch Jamie's message to Life List participants before our first round of closed track car lapping.

My career was supporting adults and children with handicaps and disabilities in group homes, a career I loved and started when I was 17. I graduated from Loyalist College in 1994 from the Developmental Services Worker Program (Dean's List, yeah...I didn't expect it either!)

Given my education at Loyalist, I had a basic knowledge of what Parkinson's was....the neurotransmitter dopamine being deficient, the portion of the brain that was affected, the effects involved in the body, the average age of onset, etc... But at 40 and recently graduated, I certainly wasn’t thinking about needing to know anything more than that. Now, I’m an expert!

In truth, I didn’t understand Parkinson’s at all when I started my journey and I think that’s a pretty common thing for young people. That’s why events like Life Lists Challenge for Parkinson’s are so important we’re raising vital funds, but, I’m happy to be a part of this because it allows us to talk about Parkinson’s in an open manner… I’m hopeful that as you join me jumping, racing or at any of the events you’ll know that you’re making a difference in the fight through both raising money, and generating awareness and understanding.

Preceding my diagnosis, I was always an active guy. I love soccer - I’ve played all my life, and I still do. I remember my symptoms started showing about one year prior to my diagnosis - my right arm stopped swinging when I would run, as was pointed out to be both by my eldest son and my teammates. That was it. After five different doctor referrals and a year later, I was diagnosed with Young Onset Parkinson’s in Peterborough by Dr. Peter Tovich.

After the initial shock was over, I sought out help from a stranger. She would turn out to be one of the most inspiring, strongest, self-reliant women I have known in my life thus far....Stephanie Ossana (now Stephanie Bruder). She was involved in a local support group at the time, something that I’ve really come to value over my course of experience with Parkinson Canada. With Stephanie's help, including introducing me to a network of absolutely amazing individuals within the Parkinson Community, I have changed my life for the better in so many ways.

I absolutely have to mention that it is a much easier fight when you have not only good people in your life, but have a true partner beside you in the battle. I have that in Beverly, a woman who tells me, and I quote, “Jamie, I will be standing there right beside you when they find the cure; and if they don’t. ...I’ll crawl in bed with you and watch our favourite movies until they do!” Facing an uncertain future, that is everything a man can ask for.

I’ve made a commitment to fight Parkinson’s personally by taking care of myself with medications, supplements (in consultation with a physician) and physical exercise as much as possible.

When people see my Superman tattoo, initially they get a mental picture of a middle-aged guy living in his parent's basement, who never grew up… but it serves to be a conversation starter to my fight, and as I explain, I don’t refer to it as a cartoon character, but the character that that particular figure represents. "Superman" isn’t seen on the outside appearance of Clark Kent every day... Superman appears only when extraordinary strength is needed; therefore when my tattoo is seen, I refer to it as my "inner strength symbol" and I know I need that in the fight against Parkinson’s.

I don’t leap over tall buildings in a single bound, but as I’m trying to prove to Parkinson’s, I’m up for any challenge and I encourage you to take your inner Super Hero to the air like me.

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Maureen Thun

St. Catharines, Ontario
51 Years Old
Diagnosed in 2006

Stays positive; life is an amazing journey

 

My Story

Who am I... well I’m a mother, wife, sister, friend and… oh yes, a person living with Parkinson’s. I was diagnosed with at the age of 42, married and our son was 11 years old. It has been nine years since we first heard those words of “Parkinson’s Disease.” I did not know anything about Parkinson’s, nor were we given any information that day. After about six months of trying to gather as much information as I could I reached out to Parkinson Canada and Burlington’s support group. From that moment on I became totally absorbed with volunteering my time by leading the support group, educating our community and fundraising through Parkinson SuperWalk. Through this journey I have met and some amazing people that I am proud to call my friends.

I'm committed to living life to the fullest, and making a difference in the lives of people impacted by Parkinson's. I'm active in my local support group, in community fundraising initiatives, and in supporting my family. This year is about me, though. I'm going to live a dream and take to the sky in a Hot Air Balloon in support of Life Lists Challenge!

Adventure isn't new to me, and I'm not going to let Parkinson's get in the way. I think one of the most amazing things our family has done is that we took over a year to plan our European vacation. We travelled with 14 members of my husband’s family through Germany, Switzerland, and Austria. We then got on a cruise boat in Venice and proceeded on a Mediterranean trip to Greece, Turkey, Croatia and Italy. It was truly a life-changing moment and confirmed our love of travel and experiencing new things.

While receiving the news that one has Parkinson’s is not something I wouldn’t wish on my worst enemy, it has been an amazing journey and one that I wouldn’t trade for the world. I know when people hear this they will question it, but I realized that I had come to a fork in the road of my life. I was very proud of what I accomplished for the first part with my career, meeting my husband and starting a family. But now I had the opportunity to do something more by educating, raising awareness and fundraising for families like mine within our community.

As we know, each individual’s journey with PD is different. While it is clear now that my progression of Parkinson’s is slow moving (and I’m very thankful for that, it isn’t the case for everyone) it also comes with a price. While someone looking at me may not see the classic symptoms of Parkinson’s many of my symptoms are recognized now as “non-motor symptoms”. I have struggled more with cognitive issues, in particular short term memory recall, anxiety and depression. These were things that I had never experienced before as I had always prided myself on how I could multi-task with my career, being a mom and a wife and participating in things that I enjoyed doing.

I am very grateful for the continued support and friendship from those at Parkinson Society. I think there is something about living with something like Parkinson’s that makes you realize that you do things more in the moment. You don’t put things off until tomorrow if you can do them today!

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AB Rustin

Etobicoke, Ontario
78 Years Old
Diagnosed: March 2011

Stays ahead of Parkinson’s

 

My Story

Life Lists Challenge is such an important concept. It's teaching people like you, and people like me living with Parkinson's to live life to the fullest, today. In 2016, I lived out a life long dream to get behind the wheel on a race track! Check out my pictures here, including a shot of me in the passenger seat of a Porsche 911, and giving a big hug to my new friend Matt who lived the dream alongside me.

I was so excited about the Closed Track Car Racing event. I’ve been a fan of Formula 1 for years… Finnish driver Kimi Räikkönen has been my favorite since David Coulthard retired, and before him, Jacques Villeneuve was my special driver, mainly because he is Canadian and it was his father, Gilles, who piqued my interest in the late 70’s. A few years back, I went to Monza and to Montreal F1, and last year, I took to the track myself!

I came to Parkinson Canada as a volunteer more than 25 years ago. I had just returned from 5 years in New York City and wanted to do some volunteering, having seen the impact that Parkinson’s had on the lives of the patients I was working with. I also wanted to help my father-in-law who was diagnosed around that time. They soon hired me as National Field Director and I worked there for 3 years. When I moved to the Guelph area I began volunteering with the Chapter there, where I helped out with the Support Group, Parkinson SuperWalk and other functions. In the 25 years that I’ve been involved time, I’ve seen the organization grow significantly and research make great strides in treatment and identification of the cause of Parkinson’s.

Five years ago, I was diagnosed with Parkinson’s myself. This came as a shock, as you can imagine, but it also came as a challenge that I faced with strong resolve, knowing Parkinson Canada well and the support that is available through them to help me, and all Canadians living with Parkinson’s, navigate the complexities of this disease.

I’m facing this challenge with a positive mindset though, with support from Parkinson Canada staff and friends, and with an intention to show Parkinson’s that it won’t win. I hope you’ll view Life Lists Challenge as an opportunity to do the same. Your generosity and enthusiasm for the cause will go a long way to help find a cure and in helping people like me live a more fulfilling life.

I think that the staff who work at Parkinson Canada are nothing short of wonderful. When people are newly diagnosed they can phone and get information and they can come in and talk to somebody and/or come to a Support Group or come to an education session. I really appreciate Parkinson Canada offering the educational information sessions. There’s always something new to learn at these sessions.

Life has changed for me since my diagnosis, though. I am slower. Tasks are growing more challenging. I virtually have to talk to myself as I’m walking, by coaching myself to take BIG steps and swing my arms. I've also been actively involved in a new dancing with Parkinson's movement... perhaps you've seen me on CBC strutting my stuff. Parkinson's has led to changes, but I remain positive. I do realize the importance of exercise so I swim and/or walk four times a week and I attend two Dance classes, specifically geared to people with PD.

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Life Lists Challenge - Carol Patterson

Carol Joy Patterson

Newfoundland

Up for the Challenge

 

My Story

It started with a trembling right hand. Or maybe much earlier after a serious head injury when I permanently lost my sense of smell.  Anyway, there I was with a diagnosis of Parkinson’s. I’d already beaten four cancers and was in a “holding pattern” with a rare lymphoma. Parkinson’s gave me real problems at first, but I was able to also put it on “hold’  by experimenting with different doses and medicines AND exercising a lot. My symptoms disappeared, as long as I took my meds five times a day… handwriting improved, twitchiness and nightmares almost disappeared  and no more shaky hand.

I decided to go after some of my dreams while I still could. It’s one thing to try something new that scares and challenges you. It’s another thing to do it as a ‘vintage’ woman with not one, but two, incurable diseases lurking. Would it be too stressful?

First of all, I acquired a cherry-red antique car last year, just like the one I had owned in my twenties. I was rather intimidated at first, but my gearshift abilities came back and so did my smiles. She’s an adorable 1953 MGTD that I call “Lulu”. Luckily, I have a great mechanic…a neighbour who renovated the bits that needed it and I was off, driving her only in perfect weather with the soft top down. My timid short excursions seemed long and glorious. I felt renewed.

Then this spring, the TV production company I run with my husband, Lawrence, got the contract to produce the legendary annual road rally, Targa Newfoundland. Self-employed people never really retire, even with PD. I had produced and directed the first Targa television documentary fifteen years ago and in several subsequent years. 60-70 automobiles of all shapes and sizes come from across North America to compete on closed-off country and town roads…for a full week! 1600 kms total, counting the long transits on the highways.

The wild idea came to me…why not enter with Lulu? Lawrence could produce the TV show. I could drive in the relaxed ‘fun’ category with my Toronto neighbour mechanic,Lou, along and my brave friend, his wife Carolyn, as my navigator. The chance of a lifetime.

After lots of paperwork, with safety gear and intercom helmets purchased, a transport lift across land and sea for Lulu and flights for us, we were in St. John’s ready to roll. A fascinating array of cars from a 2016 Lamborghini to Corvettes to race-prepared Minis and Subarus were geared up for the rally, covered in stickers, engines tuned. We rolled out for a qualifying Day, then five days of a dozen distant closed-racing stages between five and twenty kms each.

Every tiny fishing village and busy town seems a long way to reach in Newfoundland but oh-so-worth-it.  Volunteers had blocked off the roads so we could drive as fast as we dared. The scenery was stunning… it was hard to keep eyes on the road. The other Targa drivers and officials were pretty patient with us driving the slowest, oldest car. We got lots of thumbs-up from them, even as we heard rumours of bets against us finishing even the first day! Days were long but the weather co-operated except for one very windy,rainy day. We returned each evening to either St. John’s or Clarenville, to lick our wounds and tune our engines.

The most challenge for me was remembering to take my Parkinson’s medicines on time and finding places to pee in the wilderness! I was a bit worried that the daily stress would worsen my health. It seemed to have the opposite effect…we were running on adrenaline and grins.

At the end of the last day of competition, after 1,600 kms and with only the last 5 km stage through the charming village of Brigus remaining, Lulu refused to start. Her new ignition part had failed. Other competitors’ mechanics came to help and eventually got me started, in the true spirit of Targa. But it was too late to cross the finish line.

What a week! Would I do it again? Absolutely. But, sorry Lulu…in a faster, newer car…to the relief of all, I’m sure. Hope  and trust in the future is what keeps us Parkinson's people going. No time to be depressed. Adventures await.

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