Living with Parkinson’s means showing tenacity

Jean-Philippe Giroux

IJL – Réseau.Press – The Nova Scotia Courier

Special report in four articles – third part

Each person with the condition is different, with specific needs. To get a better idea of ​​one of these realities, The Courier had the chance to speak with a couple from Glace Bay, Ian Lee and Wendy Kingwhich has had to adapt and adjust over the years.

JP: Tell me about your life since getting your diagnosis. How did it happen, from the beginning until today, and what influence has Parkinson’s had on your daily life?

IL: When I first received my diagnosis, I was, like anyone else, taken by surprise. But over time, I learned to accept the fact that I had Parkinson’s disease. My life has changed a lot because of Parkinson’s disease and I have learned that you can live with Parkinson’s disease, but it will be difficult. It’s not the end of the world for me, and there are a lot of adjustments to make.

The diagnosis of Parkinson’s disease has had a definite financial impact, so to speak, because of the Parkinson’s diagnosis. That said, the best thing I could do was learn as much as I could about Parkinson’s disease in order to accept it and learn to live with it.

Today, I enjoy helping others on their journey through Parkinson’s, using the knowledge I gained during the seven years I was diagnosed.

[…] I got involved with the Cape Breton East Chapter [de Parkinson Canada] and I became vice-president of the section itself. I really enjoy talking to other Parkinson’s patients to allay some of their fear and let them know that there is life beyond Parkinson’s.

WK: One of the first difficulties was the diagnosis itself, as it takes some time to agree on a diagnosis of Parkinson’s disease. There is no blood test or other method to determine this. It’s almost a process of elimination. At first it was very stressful because we didn’t really know what was going on. […] we were grateful to finally have a diagnosis.

JP: Financially, what have been the biggest obstacles for you both to overcome since the diagnosis?

IL: The financial burden was due to the fact that I had to leave the workforce earlier than expected. I wasn’t prepared to stop working so soon. This reduced my income and also had an effect on my pension. I lost a lot of money because of my diagnosis, and having to renovate parts of our house to accommodate my disabilities.

WK: […] The other thing, of course, is the different medications. We are fortunate that the medications Ian is currently taking are covered. However, the neurologist is looking at some of the new options available on the market and not all of them are covered by health insurance, which limits what one can try with their treatment plan, as some are quite expensive.

IL: […] My Parkinson’s level is controlled by the fact that I exercise every day. My wife and I go to the gym at 5 a.m. every morning, luckily. This is what keeps me healthy, along with the medication. Exercise is the key to this disease.

JP: What are the most useful exercises?

IL: We started with boxing seven years ago. Boxing is one of the best exercises you can do, non-contact obviously. It’s just about the movements you make. Movements of the arms, head, torso, legs… It is an excellent sport to fight against Parkinson’s disease.

WK: We do weight training to keep our muscles busy and strong. Cycling is also very good for balance and also for patients with Parkinson’s disease. You might think that wouldn’t be the case, because when we think of someone with Parkinson’s disease, we usually think of someone a little unsteady on their feet. But it’s amazing when you get on a bike how well you balance.

JP: Now that the Parkinson Canada report is published, that the public can read it and that elected officials can read it, what impact do you hope the study will have on them?

WK: What we hope to have accomplished is that elected officials will look at Parkinson’s disease and, you know, it’s no secret that cases of neurological disorders are on the rise. Diagnoses of Parkinson’s disease are increasing exponentially, as are other neurological disorders. I think the hope is that this report will lead to increased funding for local health care.

IL: It is hoped that the report will have a major impact on education, raising awareness among politicians and the public about Parkinson’s disease in general, the effects of the diagnosis on physical and mental health, as well as the economic burden, including out-of-pocket expenses of families living with Parkinson’s disease.

It is hoped that this information will inform elected officials on how to direct funding to help people living with Parkinson’s disease manage their symptoms, benefit from affordable treatments, and take advantage of new and revolutionary ones to access financial assistance and support for people with disabilities, individuals living with Parkinson’s disease and care partners, and to fund research with the aim of finding a cure.

In the meantime, better access to health care for people diagnosed with Parkinson’s disease and access to neurologists to receive the diagnosis and subsequent treatment would be appreciated.