My dad, is the family member with Parkinson’s. It’s not some distant uncle or close cousin, it’s my dad. And I should clarify it’s not my “dad, dad.” I am very blessed to have two mothers and two fathers. I never use to look at it that way growing up but I definitely do now. My parents (Paulette and Winston) divorced when I was 8. My mother remarried to Les and my father remarried to Trina. It took a long time for me to accept them as my parents as I was a very angsty, disrespectful, and bratty preteen/teenager. I think I’ve been calling Les, “dad” now for a couple years. At first I just use to say it to friends but over recent years I say to him too.
I lived with my mom and Les/dad from 9-18 and the first two summers of university. I think I only lived with my dad and Trina for about 8 months when I was in grade 8 and they mostly lived in different provinces. This is not me saying my father, Winston, ever failed me in any way because he didn’t. This is just the circumstances and I know that if my dad (Winston), could have been with me for everything he would of, and even though we have not always had the closet relationship, I do not love him any less.
But back to Les. Les taught me how to drive. He showed me how to chop and stack wood. He taught me the value of travelling and seeing the world. He started his own business and showed me what a true entrepreneur looks like. He showed me how to treat people with respect. He taught me how to play chess and use chopsticks. He is the reason I love sci-fi and fantasy and just movies in general. He has always been my biggest debate rival. He buys my mom a bouquet of flowers every week and when she was working he would bring them to her there in front of all her coworkers or have them delivered for special occasions. He was my shoulder to cry on when boys broke my heart. He is one of my biggest supporters and has always pushed me to do more, and has always loved me exactly the way I am.
And I am not his biological daughter. He is not my biological father. We chose to love and accept each other, and slowly, day by day, I am losing him.
Parkinson’s is a complex neurodegenerative disease that everyone who has it experiences differently. Right now it has no cure. Our movement is normally controlled by dopamine, a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die, the symptoms of Parkinson’s appear. Symptoms include: tremors, slowness and stiffness, impaired balance, muscle rigidity, fatigue, soft speech, problems with handwriting, stooped posture, constipation, sleep disturbances. As brain changes caused by Parkinson’s gradually spread, they often begin to affect mental functions, including memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task.
Watching someone you love so much, go through something like this, is absolutely heartbreaking because there is literally nothing I can do to help him but be here for him. He’s not going to get better like with some injuries of curable diseases, he is literally only going to get worse. He was diagnosed 5 years ago in 2014. Since then he has dealt with not only the tremors but stuttering, memory loss, anxiety, depression, and nightmares. He’s tried many different medications, most recently he is on Levadopa which he has to take 4 times a day. Levodopa has serious side effects like dizziness, loss of appetite, diarrhea, dry mouth, mouth and throat pain, constipation, change in sense of taste, forgetfulness or confusion, nervousness, nightmares, difficulty falling asleep or staying asleep, headaches, and weakness. My mom described to me one night she woke up to find my dad just staring out the window at 3 am, crying from waking up from a night terror.
So what’s it like? To live life with a family member with an incurable, degenerative disease. Well, it’s my normal. Sometimes I forget he even has it because I look at him most of the time and just see my dad, talking about his newest business idea or some wacky, new project he’s starting. Other times I break down in tears thinking about how much he must be suffering internally and the thought that one day he may look at me and not remember me. These are things I go through and it feels selfish of me to feel like I’m suffering when he’s suffering so much more.
When I first found out about his diagnosis I did so much research about Parkinson’s, about research studies, holistic approaches, medical marijuana, etc. Still, there’s no cure. That’s a realization I had to come to. It hits you like a brick. However, people live long lives with Parkinson’s. He’s (hopefully) not going to die tomorrow. At least not from Parkinson’s. All I can do for now is continue to live our lives as normally as possible. I try not to treat him any differently, we don’t outwardly speak about it often, other than when he asks me about cannabis, since he doesn’t know a lot about it but are interested in the medical benefits for his condition, or when he jokes about taking his “birth control” at lunch time. He jokes about it because he’s so strong. I can only hope to have his perspective in my life. He travels twice a year, he loves his family so much and sees them as often as possible, he spoils us, he’s an entrepreneur, he’s so smart, he absolutely lives his life to the fullest possible. And that’s my dad. And that’s what it’s like, living with his Parkinson’s. It sucks but he’s still him, I’m still me. I love you dad, always and forever. I’m here with you. You’ll never be alone in this because you are so loved.
If you want to learn more about Parkinson’s, click here.
If you want to donate to Parkinson’s awareness and research, click here for my personal favourite Parkinson’s foundation.