Just Jill is the creation of Jill Cohen Morris. Jill is an avid rambler and mother of two from Toronto, Canada with a remarkable zest for life and a fabulous sense of humor.
Dear Just Jill,
Parkinson’s and Alzheimer’s both run in my family.
I have watched these cruel illnesses destroy my loved ones ... destroy those who have the disease and those that love them.
Having witnessed this first hand my fear is next level. Any inkling of a symptom puts me over the edge. The internet has become my best friend and worst enemy.
I’m grappling with the decision to undergo genetic testing for potential health concerns. Is it better to know or not to know?
Would I be better prepared if I knew this was my fate? Would knowing give me any advantage?
Would I just worry more and focus on my probability to develop an illness more?
Is the unknown worse?
I’m at a loss. What’s a gal to do?
Sincerely,
Anxious Annabelle
Sole Sister Advice & Comments
- I believe that knowledge is power, and there is a level of comfort in knowing that you are doing what you can to live a healthy life.
- I completely understand your concern. My father suffered with Alzheimer’s dementia. I also had a form of migraines that would scramble my thoughts. I was positive I had early onset. I went to a specialist and insisted on having a MRI done. Turns out it was migraines, and no noticeable brain concerns. The relief I felt was unmeasurable. I believe it is better to know. That allows you to plan out future steps. You don’t want to miss an opportunity to improve your chances of avoiding these health concerns.
- I am so on the fence. However I can definitely relate to this concern. My dad and grandma had Alzheimer’s and two of my mom’s brother’s had Parkinson’s. I did the Heritage DNA test and recently received an offer to upgrade my package with testing for health issues. I already worry every time I forget someone’s name so I think if I knew I was genetically inclined for either of these illnesses I would fret even more. My partner thinks knowledge is power but given that the results of the tests do not guarantee your future, I think I know myself too well to submit to further torture on this. I am usually a glass half full kind of person so I am going to hope that I can move the needle no matter my genetics through lifestyle choices and live my best life. So I think my advice to Anabelle is think about how much stress knowing or not knowing will bring you for something that is uncertain either way. By the way, I just found out about an app called BrainFit which is a component of the Mind Over Matter campaign and is designed to educate and remind you to do activities for your brain health and health in general. I just added it yesterday and am still learning how to use it, so I can’t say whether I find it useful or not yet but I think it could be another helpful tool in my health kit! Wishing you peace with your decision!
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My dad has Parkinson’s with associated dementia, which I have learned is different from Alzheimer’s. I went down many research rabbit holes on identification, prognosis, management, prevention, and hereditary concerns. I’ve learned a lot in the last couple years. Learning that daughters are less likely to inherit the condition than sons doesn’t pacify me when I feel like my brain is being sluggish or I’m second-guessing how to spell a word. What has helped, in addition to the usual healthy lifestyle advice, is learning about brain plasticity and the importance of internal voice and perspective. Brains respond well to reinforcement which increases the likelihood the process will be repeated. So, when I’ve struggled to pull something from the memory files and then at some point retrieve it, I congratulate myself and move on. Deciding whether or not to get tested is a hugely personal choice. For myself, I’ve always been a worst-case-scenario planner and I’ve opted to shore up my resources just in case. My resources in this case are my children. I don’t know if it will happen to me but if it does, it will be my children who will bear the brunt of the work so I’ve set them up for success. I’ve been clear with them on the evolution with my dad and let them know it could happen to me; I’m organizing my world such that if/when they need to take over my affairs they’ll have easy access and know the background; and I’ve been clear on my expectations of them if I can no longer care for myself. To be honest, initially they thought I was being morbid. They’re 29 and 31 so this seems like a long way off for them. However, when I explained that if they were to take the same process with me as I did with my dad - seek expert advice and make the most informed decisions possible, ensure he was safe and well-cared for, and followed through on what he told me he wanted me to do in what if situations - then I would be proud of how they handled it, even if I couldn’t tell them that then. That’s when the penny dropped for them and they realized I was trying to give them a gift.
- I may not be able to relate to this matter as both my parents passed away in their 50s. My grandma had Alzheimers but I didn't care for her as she was in a home. What I can relate is that I would want to know the potential diseases I may have inherited or have symptoms of. If there are any treatments that can help to avoid or prolong onset, I would want to go for it. My motto is prevention is better than cure. And be prepared. I never like surprises. I wish you well in your decision.
READ MORE > Just Jill, Rambler Cafe Blog
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