Anxious Annabelle's Alzheimer - Just Jill

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 from Alzheimer’s dementia. I also had a form of migraine that would scramble my thoughts. I was positive I had early onset. I went to a specialist and insisted on having an MRI done. It turns out it was migraines, and there were 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 brothers 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 to 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 to 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!
  
  
• 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 of years. Learning that daughters are less likely to inherit the condition than sons doesn’t pacify me when I feel like my brain is 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 that 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, my children will bear the brunt of the work, so I’ve set them up for success. I’ve been clear with them on the evolution of 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 follow 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 Alzheimer's, but I didn't care for her as she was in a care home. What I can relate to 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.
  
  
• I think I would like to know so I could prepare to get euthanasia when ready. My mom passed away from COVID and advanced dementia.
  
  
• I'm in a similar position and have wondered if it was better to know via genetic testing. While the fear is real and upsetting, I try to focus more on what I can do daily for now. I can walk, I can breathe, I have the capability to make the best of every day as I am able. I feel at the end of the day that is all we can do. I might get a timeline via testing (or not) yet we could trip tomorrow and life as we know it could be over. I wish you peace. 
  
  
• I’ve known since I was 18 that I have a genetic degenerative kidney disease. Knowing this, I have tried to live my life peacefully and with as much joy as I can find in all the simple things like sunshine, trees and laughter. I try my best to take opportunities when they come as there may not be another chance. I try not to dwell on what is to come but do my best to be grateful for each day and to find ways to make the world a little bit better. Do what you feel is best. You are wise. I hope that whatever you do, you find peace and can accept that life is small and beautiful. Be kind to yourself and always try your best to make each day the best that it can be. 
  
  
• My grandmother, grandfather and great aunt all developed Alzheimer’s (all gone now) and I chose to get tested. I was soooo relieved that I don’t have the genetic markers. Knowing I can still develop it, I have a Representation Agreement and Enduring Power of Attorney in place to ensure my wishes are followed should I lose capacity. That gives me some peace.
  
  
• How would you live your life if you knew you might get it? I had a friend at risk for Huntington’s and he said he lived assuming he would get it (he didn’t). My dad & his first cousin had Parkinson’s. I try and stay active. There are also tips on slowing the progression if you do get it.
  
  
• If it's something I can't prevent and for which there is no treatment, the only thing that testing can bring me is anxiety. I'd say no to testing.
  
  
• My family has a history of both of these diseases and it worries me very much too. I watched my father and my grandmother die with Alzheimer’s and I have two uncles who had Parkinson’s. I think it is important to consider the type of person you are and whether knowing can help you change anything or prepare for. In my case, I know I am a terrible worrier and for me, I think it would be worse to know. I already do things with Alzheimer’s prevention in mind and try to live an active life physically and cognitively. At this point there is nothing that is a sure thing about either of these diseases. For others, knowledge is power and this may be where you are at. I wish you well and I am very interested to read the thoughts and advice of other Sole Sisters and maybe it will change my mind. 
  
  
• I have both in my family. I ended up getting sick with Inflammatory Bowel Disease at 58. I spent the last 5 years in and out of the hospital, having several surgeries and horrible emergencies from both the illness and side effects of medications. I was supposed to have a 6th surgery that got canceled indefinitely for some unknown reason and I am so happy. My anxiety is so much less and I got a puppy. I have had my life put on hold for so long I really don’t want to know if there is anything else wrong with me.
  
  
• My mom has Alzheimer’s and my grandma had it - so it’s on both sides of the family. I worry when I can’t think of a word or forget a name, which seems too frequent. I had no idea there’s a genetic test for it! I’m a “give me all the scientific information” kind of gal. I’ll look into the test, though I'm also not sure I can handle the results right now.  If not doing the test, I believe it’s best to concentrate on overall good health, exercising your brain and body. I read up on what’s linked to dementia: Give up toxic alcohol or at least moderate. Stay on top of your hearing, sleep habits, blood sugar levels, and stress relief. Enjoy nature and the company of others. At least that’s what I’m trying to do.
  
  
• I am the kind of person who would want to know. There are so many preventative measures that you could implement that could slow the process down, and in that slowing, possibly give you time to see what medical research comes up with for possible cures.
  
  
• Just because you have the gene does not always mean you’ll get the disease.
  
  
• It’s such a vexed question. My mum died of ovarian cancer, as did her sister and aunt. My grandmother, on her side, died of breast cancer. I had preventative surgery in my 40s. Full hysterectomy and double mastectomy. At that time, genetic testing wasn’t an option. I did get genetic testing when it became available. I had tests for as many conditions available at the time. My results were clear, and they have given me relief. Doctors assured me the surgery wasn’t a waste as genes aren’t the only factor. But I’m not sure how I would be if they’d shown something was a predisposition. I hope that it would be helpful to manage and take preventative measures, but I know my mind overthinks, and I’d get worried every time I had any sign or symptom. The best way is to be as active and healthy as possible as we age. Good luck.
  
  
• My husband died with Alzheimer's, and both my sons have decided not to be tested. It’s a personal choice for sure, but one that comes with severe anxiety & stress.
  
  
• A genetic test alone may not be of any value. I am currently going through health issues with my husband. It runs in his family, and he has now been diagnosed with early onset, but the genetic test was not conclusive. The brain is a very difficult and complex organ. Given what I’m going through with my husband, I say, live every day to your fullest, and don’t do the test unless you have a good reason; it may only offer more unneeded stress and not offer the answers you seek.
  
  
• My grandfather had Alzheimer's. My dad has dementia, and his brother has Parkinson's. I have the same worries. I'm not sure how the disease is passed down. Part of me wants to know if I carry the genetic marker or not. Perhaps I would focus on prioritizing my life in different ways.

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