Cassie Armstrong - Parkinson's Warrior

When a friend mentioned that I am always dancing ….

Cassie's story:

"I always dance when I am able… Life is too short to forgo these blissful moments. I embrace everything that everyone else takes for granted. Everything… Everything is a blessing. Being able to dance, lying still in the darkness, tying my shoes, brushing my teeth, driving, painting, cooking, holding a glass of wine- literally everything. Life is a gift. I choose to embrace it, despite the shit cards that I have been dealt. I feel everything with immense passion and see the beauty all around me every day. Everything that I look at, every person that I look at… I absorb everything in its entirety. I want to experience everything life has to offer… Before I can’t. ✨

So, my story began in 2017. I noticed my first tremors… Didn’t think much of it at the time… I just stared at my hand, wondering what the hell was going on. It stopped, and it didn’t happen again for a few weeks, then I started to notice I wasn’t swinging my arm when I walked…. And my ankle was always tense when I was working out… My toes felt like they wanted to curl underneath my feet. The tremors happened again, and when talking to a neurosurgeon, they said "Oh, you’re too young for Parkinson’s, let’s see if it’s a pinched nerve or MS." Several CT scans, MRIs, and one year later - Nothing…

They finally ordered a DAT scan - which measures the amount of dopamine in your brain. Dopamine is the neurotransmitter that helps your brain talk to your muscles. The scan revealed that I had young onset Parkinson’s in the right hemisphere of my brain… which has now spread to the right side about a month ago. What is crazy is that if you even have any symptoms of Parkinson’s, 80% of the dopamine is already gone. Parkinson’s is a very misunderstood and mysterious disease. Doctors do not know why the cells are dying, other than there is a protein that builds up on them and kills them. After receiving the diagnosis, I was devastated- as anyone would be. Not only would I lose my motor functions, but I knew I had to quit my career as a dental hygienist.

I feel like I might have to word this carefully, not to upset anybody, but I am very grateful for the job I have now; however, I am making about half of what I used to make. That makes it somewhat challenging to get ahead and ensure I’m financially stable enough to pay my medical and regular bills. Not to mention, I’ve exhausted all of my PTO due to the intense and painful symptoms where I simply cannot drive to work. So in my leave of absence for the surgery, I will be out of work for six weeks with no pay.

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So my main symptoms are mild to sometimes violent tremors and dystonia. Lately, I have been experiencing dyskinesia due to all my medication.

Dystonia is involuntary muscle contractions that cause repetitive or twisting movements.

Dyskinesia is uncontrolled, involuntary movement that may occur with long-term levodopa use and later-stage Parkinson's. Dyskinesia can happen in one body part, such as an arm or leg, or the entire body. It can look like fidgeting, writhing, wriggling, head bobbing or body swaying.

Other symptoms people don’t see are internal: digestive issues, issues with swallowing, cognitive/memory issues, and extreme anxiety/panic attacks.

These things that I mentioned before; things that people take for granted, such as brushing my hair. Perhaps it’s a blessing in disguise, because a lot of people like my hair curly, but I can’t blow dry my hair anymore. I can’t even hold a brush without my hand cramping and it falling to the ground. Lying still, relaxing, not shaking when you’re trying to hold a loved one, or snuggling on the couch to watch a movie. Creating art is one of my passions. I love working with resin and doing dot paintings, but I have to time my sessions in between periods of tremors.

Just really a lot of day-to-day things. I have to voice text a lot because it’s hard to hit a moving target... Walking is slowly becoming more difficult. Now that I am stage two and the tremors and dystonia are in both legs, balance is a bit tricky. A lot of times when I’m having really bad episodes, I can’t even go into a grocery store to get groceries. It feels like someone is trying to separate my foot from my leg and rip my arm out of the socket when the dystonia kicks in full force. I take six different medications just to function properly on a daily basis… One of them I take every 2 to 3 hours, and if I don’t take it right on time, I have to sit where I’m at and wait for the tremors, dystonia, etc., to calm down before I can go into public or continue with whatever I’m doing. Basically a slave to a pill bottle."