charity · cycling · Guest Post · illness

I live with Parkinson’s. For me, raising funds for health charities is personal (Guest post)

By Susan F

I joined the military reserves when I was 18 to play the French horn in the Changing of the Guard band on Parliament Hill in Ottawa. In 2011, I flew to Maputo, Mozambique by myself to join strangers on a Habitat for Humanity build. I’ve even hiked to Annapurna base camp and para-glided off a mountainside in Pokhara, Nepal.

But my biggest challenge, and maybe my greatest accomplishment, is facing Parkinson’s disease head-on. I hope I do so with courage, fortitude, and occasionally even a little humour.

I am writing to share my experience with PD and Parkinson Canada, one of the 21 health charities supported by Federated Health .

I was diagnosed with Gaucher’s disease, a rare metabolic disorder, about six months before my PD diagnosis. At the time, I was told this meant I was at high risk of developing Parkinson’s disease.  When I subsequently developed a tremor in my right leg, I was not really surprised when PD was confirmed. In fact, immediately after the diagnosis, I texted my family, had a very brief period of feeling sorry for myself, and headed back to work from the hospital.  I subsequently learned how lucky I was to be so quickly diagnosed, as many people suffer for years before diagnosis.

In terms of how PD affects me, the most obvious symptom I have is tremors affecting my right side, which are made worse by stress. For me, the weirdest thing about Parkinson’s is that your body doesn’t do what it used to do automatically, so I have to try to tell it to do things. I have trouble with manual dexterity, things like typing, buttoning buttons and cutting bread. I also have to be careful walking so I don’t trip and fall. Lately, it’s been difficult to roll over in bed.

I am fairly lucky though that so far, my Parkinson’s disease is quite manageable. And my friends, family and colleagues have been incredibly supportive, especially over the past several months.

I was honoured earlier this year to be able to participate in a world-first clinical study which used an MRI-guided ultrasound to open the blood-brain barrier (BBB) on the left side of my brain. While my BBB was open, I was infused with a drug commonly used to treat Gaucher’s disease. The purpose of the phase one study was to determine whether this could be done safely. There were only four participants, and I was patient four.

 

Susan taking part in the clinical trial

Although there was no promise of any benefit to me, I was pleasantly surprised to notice a fairly significant difference in my symptoms. The most obvious change was that I regained a sense of smell. Many people don’t know that some Parkinson’s disease patients start to lose their sense of smell long before they are diagnosed. That had happened to me.  I can’t say that regaining smell is all positive given that the first thing I smelled was my cat’s litter box

Seriously though I have noticed positive changes: less tremors, less rigidity of my leg, and better manual dexterity. As the study has been a success so far, they are looking at the possibility of a phase two trial.  If it goes ahead, it will include a larger group of people with the focus on effectiveness of the procedure. I am very hopeful that this could lead to significant benefits in the prevention and/or treatment of Parkinson’s disease.

In closing, I want to mention Parkinson Canada as I really appreciate the work they do through their support groups, research and advocacy. I belong to two support groups including a “young onset” women’s group (“the Parkie girls”), and occasionally attend a Sunday afternoon drop-in discussion group, all of which are sponsored by Parkinson Canada.

I’m also part of a bike group called the Rigid Riders, whose focus is to encourage Parkinson’s disease patients to cycle. The Rigid Riders take part in an annual charity event, Pedaling for Parkinson’s, where 100 per cent of the funds raised goes to Parkinson Canada research.

Most recently, Parkinson Canada created an advisory group to their board made up of people with Parkinson’s disease. To me, this clearly reinforces their commitment to hearing patients’ voices and making their very best efforts to provide the support that we need. 

That’s why I am excited that Parkinson Canada is part of the Federated Health campaign.

To donate to my Pedaling for Parkinson’s Ride – https://donate.parkinson.ca/site/TR/Pedaling/CNO_pedaling_4_parkinsons?px=1153847&pg=personal&fr_id=2511

Parkinson Canada – https://www.parkinson.ca/getinvolved/waystogive/

Federated Health – https://www.canadahelps.org/en/dn/30863

Susan is a ‘Parkie girl’ who works as a lawyer. She tries to regularly practice random acts of kindness and is looking forward to days of hugs and travel.

4 thoughts on “I live with Parkinson’s. For me, raising funds for health charities is personal (Guest post)

  1. hi Susan, thanks very much for your post. I am a disabled philosopher of disability, that is, I’m disabled, have a PhD in philosophy, and specialize in the philosophical, political, conceptual, discursive, etc. dimensions of disability. I also lived up close to Parkinson’s for many years, having some interaction with charitable societies with respect to Parkinson’s. I am glad that you have found supportive networks and groups in this regard. My experience was much less positive. I also am reluctant to endorse and promote charities that focus on an individualized and medicalized understanding of disability for a variety of philosophical, class-based, and political reasons. I could elaborate these reasons, if you are interested. Best regards, Shelley

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  2. That’s very encouraging news about opening the BBB on your left side. Have you ever tried Dance for PD? This is a professional dance organization through the Mark Morris Dance Group. I taught it for a while, and loved how happy my clients were. Please look for a Dance for PD group near you. It’s a great escape from Parkinson’s for an hour or so. https://danceforparkinsons.org/

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  3. Thanks for sharing your experience Susan. It’s always encouraging to hear of new innovations and approaches to treating PD. I look forward to hearing more.

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