I am Jackie, Todd’s wife of almost 2 years; we have lived together for almost 3 years, and met 4.5 years ago at the Salmo Valley Fall Fair. I knew that Todd had Parkinson’s, before we met, as we were friends on Facebook. Todd was posting about his adventure in his van on the road, on his own for about 6 months throughout British Columbia. I was interested in his posts about his ‘Shaky Van Guy’ life, partly because I had traveled that way with my previous partner and knew this way of life with its joys and woes. The beauty of his pictures and his courage travelling on his own in spite of his health issues, caught my attention.
We had a connection, we could talk and laugh for hours at an end, and we started a relationship, seeing each other a couple of times a week, resulting in our wedding and purchasing a property a few years ago. We liked to go on hikes in nature, go to towns for coffee and a talk, visit art galleries, socialize with friends and new people in our communities in the area where we live, and listen to live music. A good base of mutual interests to start with. Todd’s arm was often shaking quite vigorously on our get-togethers, and it was very much in the picture sometimes. It seems annoying for some people, but not to me, and it still isn’t most of the times. I just felt compassion, and we would talk about it sometimes, discussing what could initiate it. Oftentimes it can be initiated by new situations, thinking (especially when trying to find a solution for any kind of thing, such as daily practical stuff, or planning for the coming week, preparing to go on a trip, and such). Emotional stress can also start the shaking. Oftentimes when I hold Todd, gently touching him, or talking about something different to distract from the shaking, a certain release of stress energy seems to gently flow away, and the shaking seems to lessen over the next couple of minutes to a half hour. I sense it has to do with dopamine release occurring naturally when there is a gentle relaxing physical touch between people, or any creature, for that matter.
As you may know, Parkinson’s symptoms are caused by a lack of dopamine in the body because the Substantia nigra in the brain is no longer producing enough of this hormone for several reasons, including environmental toxins at work or toxins in our water, air and soil.
As a matter of fact, the shaking, which is just the tip of the iceberg of symptoms, may, at times, be the least impactful in daily life. It may be a bit hard to imagine for outsiders but the less visible symptoms can be so annoying and mess up daily life for someone with Parkinson’s at times. It can occur as erratic thinking, loss of concentration, feelings of depression, anger and despair. As a partner it means you are on the alert most of the times, sometimes with feelings of anxiety when waking up in the morning, and hoping: “Oh, will Todd be in a cheerful mood, will he be able to go on that trip, or go to pickleball, or help me in the garden today?” When something unexpected comes up, it can suddenly change from a feel-good day into the opposite.
Then there are some physical matters that can make life with Parkinson’s challenging. Having to suddenly go to the bathroom, is one of them. We both know virtually every public bathroom in our area (not just for Todd, but also for me sometimes, due to some neurological issues I have). It can be a drag, but most of the times, we laugh and make fun of it in a Mr. Bean-like way, sometimes resulting in a hilarious spontaneous eruption of stand-up comedy, which we make up right there at the spot, in that moment of inconvenience and embarrassment. Making fun of it, seems to be one way of coping with it. Laughing away at it makes you forget about it for a while and helps to move on to the next adventure.
Key for creating and maintaining a liveable life with Parkinson’s to us is seeing and pointing out the beauty of little things such as a flower, a bird or a piece of art, the loving connection with community members and each other, and continuing to make plans for fun outings, trips and projects. The last and most important: being grateful of what we can still do today! Gratitude feels healing and gives a sense of relief. These matters will keep us alive and kicking, with sometimes a day of rest and introspection in between, one day at a time…