Could you describe to others what Moyamoya is?
Moyamoya is a rare neurovascular condition that causes narrowing of major blood vessel(s) within the brain. As a result of inadequate blood flow, people with moyamoya often experience strokes and/or seizures. There is currently no cure and this condition is progressive.
How long did it take before you were diagnosed?
I have had moyamoya since I was a child, but it went undiagnosed. Then I was misdiagnosed in 2013 until 2018.
How does Moyamoya affect your daily life?
Moyamoya makes me very sensitive to blood pressure changes. Since childhood, my brain developed many tiny blood vessels in an attempt to compensate for the lack of blood flow. When my blood pressure goes up, some of those tiny blood vessels burst and then I get mini hemorrhagic strokes. When my blood pressure goes down, some of those tiny blood vessels clot and then I get mini ischemic strokes (TIAs - transient ischemic attacks). Examples of some daily life activities that raise my blood pressure: feeling startled/angry/sad/anxious, feeling [cold], physical activity/exertion (e.g. cleaning, going up/down stairs, carrying things, bending over, sex), etc. Examples of some daily life activities that lower my blood pressure: sleeping, feeling [hot], walking for more than 30 minutes, standing up, relaxation/meditation, inactivity, etc.
(Julia’s note: square brackets indicate an edit)
Moyamoya also significantly increases my risk of having a major/catastrophic stroke. So not only do I have to manage my symptoms and limited energy, I have to balance living each day as if it might be my last while still planning and hoping for a future.
Could you tell me what you did as a clinical trial manager?
As a clinical trial manager, I was responsible for: cancer clinical trial management across Canada, managing and consulting clients (pharmaceutical and biotechnology companies; hospitals) and vendors, and supervising teams of clinical research associates (i.e. monitors).
I see you do volunteering, where do you volunteer and what do you do?
Currently, I volunteer with the Brain Injury Society of Toronto (BIST) where I am on the Board of Directors, I co-chair the Advocacy Committee, and I have a self-help column on their blog (Mind Yourself with Alison).
I also volunteer with science graduate students from the University of Toronto. I am a career mentor and a facilitator for their Industry Team Case Study program.
Furthemore, I am a reviewer for the National Occupational Standard that is in development to standardize core competency profiles for various roles within the clinical trials industry. This will be my last contribution to my profession as I am no longer able to work.
How has COVID impacted you this past year?
The Good: I don't have to feel guilty about not wanting to go out to do things or see people. I now know which relationships are most important and meaningful to me. I am even more grateful for my home, my husband and my dog.
The Bad: I'm missing out on watching my niece and nephews grow up. I miss hugs from my siblings. I miss hosting. I am at high risk of complications from the virus, so I'm avoiding everything except for outdoor walks and grocery shopping. This has made my world, which was already small because of brain injury, even smaller.
Tell me about any hobbies you have or things that bring you joy.
I love to train my rescue dog, cook/smoke/grill, learn Korean, and garden.
Any last things you would like to say or a message you want others to know?
1. Don't let your brain injury become your identity and stop basing your self-esteem on measurable things. Instead, measure your self-worth by the choices that you make every day.
2. Only do things that are absolutely necessary or that bring you true joy. I promise you, if you follow this decision-making process, many of your symptoms will improve.
3. The secret to happiness is to have a grateful perspective and to live a meaningful life. I haven't found a greater purpose than to leave the world a better place than when you entered it. If you can't change the world, then change the world of one person. And how you want to do that is what defines your personality, interests, and values.
Interviewed and recorded by Julia S.