The following is a brief interview with a community member with Parkinson's disease named Angela Wensley (pictured below). She agreed to participate as part of Parkinson Society BC's awareness efforts in 2018.
1. You track your Parkinson’s disease (PD) symptom management through a report that you send to people in your network. How did this come about?
Shortly after being diagnosed with PD in 2007, I encountered people who were trying all sorts of alternative “treatments” (acupuncture, traditional Chinese medicine, Ayurvedic medicine, chiropractic, homeopathy, Bowen Technique therapy, gluten-free and lactose-free diets, botanicals, neurofeedback, chelation, glutathione, low-dose naltrexone, amino acid therapy, meditation and more). I thought that if I could try them all and report on their efficacy, I could save people a lot of time and money. For example, I tried medical Qigong for an entire year before deciding that the practice was not helpful for me. Today, my personal conclusion is that, besides the PD medications, only physical exercise has the potential to slow the progression of PD. Some practices such as meditation may help people cope with their PD. Other practices such as neurofeedback are fun and do not appear to be harmful. New alternative “treatments” for PD still keep appearing, but I no longer try them.
2. How has your support system been valuable in your Parkinson’s journey?
I have two support systems: one for when I am in Florida (October through March) and another for when I am home in BC. South Florida is “ground zero” for PD treatment. I go to the Florida Movement Therapy Center in Boca Raton; I go to Rock Steady Boxing; I attend a young-onset PD exercise class; and I play tennis with a coach. The Parkinson’s Foundation in the United States is very active and useful. The only downside is that access to the US medical system is very expensive, so I don’t have a neurologist when I am in Florida.
Back home in South Surrey, I work out with a personal trainer, go to Rock Steady Boxing and may get to see my neurologist and my movement disorders specialist. I also count Parkinson Society British Columbia (PSBC) as part of my support group as they offer an incredible range of services. I have noticed that Canada lags behind the US in terms of the latest PD medications, so that impacts my treatment as well.
3. How has exercise helped improve your PD?
I started exercising the day after I was diagnosed. Now, after 11 years, I am still high-functioning. My estimate is that my PD has progressed at less than half the rate it would have otherwise.
4. What types of exercises do you find most beneficial?
My personal trainer turned me on to kickboxing in 2007. Although I later dropped the kicking part (since it aggravated my sciatica), I am still a passionate boxer. Tennis is an excellent exercise for PD as it offers both physical and cognitive challenges. I also enjoy group exercises such as Rock Steady Boxing and my beloved Young Onset Parkinson’s disease (YOPD) exercise class. People with PD bond strongly.
5. What medication options work for you?
The only PD medication that I take is carbidopa-levodopa. I am now in the “short-duration levodopa response” and need to take carbidopa-levodopa every 2 hours.
6. Would you say that the general public is well aware of Parkinson’s disease and its symptoms? Why or why not?
Nowadays it is rare to encounter someone who does not know someone either living with PD or has passed away from related PD symptoms. Beyond that, the public is in the dark to some extent. Not knowing what causes PD makes it hard to tell other people about it.
As part of our mandate to be the voice of British Columbians with Parkinson disease, Parkinson Society British Columbia is publishing the views and experiences of our community members. Any views or opinions presented are solely those of the contributors and do not necessarily represent those of the organization.