It all started with a tiny tingle and I worried it was a sign of something bigger.
I was at a chili taste-testing contest when I reached to pick up a glass of hot apple cider and my baby finger tingled.
In that moment, I was concerned it was Parkinson’s disease.
I had a feeling because my dad had had Parkinson’s.
Over time I began noticing changes. My hand and arms started to tremor and my handwriting got progressively worse.
When my neurologist first gave me my diagnosis, I didn’t want to believe it was Parkinson’s. I wanted to fight it and beat it.
I still do.
Right now, there is no cure for Parkinson’s disease. It’s a progressive disease and its symptoms such as stiffness and tremor worsen over time. Each person with Parkinson’s disease, experiences it differently.
For me, living with Parkinson’s is a challenge. My main symptom is dyskinesia, which can include fidgeting or body swaying. My body isn’t always doing exactly what I want it to do. Each day is different and depends on how my body is reacting to the medication that I’m taking to help ease my symptoms.
The first participant of a world-first clinical trial
While some parts of my life are different, what hasn’t changed for me is how determined I am to help in the search for a treatment or cure for Parkinson’s disease.
That’s why I’m taking part in a world-first clinical trial that is exploring the safety of focused ultrasound in opening the blood-brain barrier in patients with Parkinson’s disease and the delivery of a therapeutic to a part of the brain involved in Parkinson’s.
I am the first patient in the world with Parkinson’s disease to participate in this research study.
When I first told my family about the trial — they were so supportive and said they were 100% behind me.
The clinical trial: Focused ultrasound and Parkinson’s
The focused ultrasound technology uses ultrasound waves to target an area of the brain.
It is non-invasive — the soundwaves reach the brain without needing to cut skin or use scalpels. The study is also investigating the safety of delivering a therapeutic directly to the brain.
I find it so interesting to see how far technology has come.
During the actual procedure, the most difficult part of the process for me is being in the MRI for hours, but other than that, I don’t really feel anything.
Being part of this trial is worth it because the study findings could help researchers learn more about this disease and maybe one day find a treatment to help people with Parkinson’s.
Love of family and hope
My family’s love and support mean so much to me. They’re a big reason why I am participating in this trial.
I saw what my dad went through with Parkinson’s and it was tough. There’s also a chance my kids could have the gene. I’m doing this for them and for others in the future who may be diagnosed with Parkinson’s.
I think research is so important and my hope is that with more trials and studies, that better treatments or possibly one day, a cure for Parkinson’s disease, are discovered sooner rather than later.
- News release – World first: focused ultrasound opens blood-brain barrier for delivery of therapeutic in Parkinson’s disease
- Questions and answers about this trial, including eligibility and how to participate
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