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Hi, I'm new

Posted: Sun Feb 16, 2020 7:58 pm
by alveatch50
I have 4/4. I'm 53 with recently diagnosed heart disease. Both parents died of dementia. Happy to be here and soak it in.

Re: Hi, I'm new

Posted: Mon Feb 17, 2020 5:46 am
by Lisa G
Hello alveatch50 and welcome to the ApoE4 forum. We, too, are happy you are here! Sorry to hear of your recently diagnosed heart disease on top of your 4/4. You've come to the right place for support and information! In case you haven't explored the site too much, I wanted to direct you to some resources that are helpful. You may appreciate taking a look at the primer as it is a great place to start and written by a physician in laymen's terms. There is also a "How-To" Guide that makes your journey around the site much more efficient. You may be interested in checking out the "Our Stories" forum to share your own story and learn about fellow members. Finally, the search function is an awesome way to research questions you may have as most likely, someone has asked the question before and there are several threads of information regarding that topic.
Again, welcome to the community. Please don't hesitate to tell us a little about yourself in the "Our Stories". Please feel free to jump in!

Re: Hi, I'm new

Posted: Mon Feb 17, 2020 6:45 am
by NF52
alveatch50 wrote:I have 4/4. I'm 53 with recently diagnosed heart disease. Both parents died of dementia. Happy to be here and soak it in.
Welcome, Andrea! You live in a state with superb health care, from what I hear from others on this site. And also a great research facility at Harborview Medical Center in Seattle which is one of 32 Alzheimer's Disease Research Centers funded by the National Institutes of Health to collaborate and accelerate research on prevention and treatment of the dementia which led to your parents' deaths., including studying risk factors like ApoE 4 and heart disease.

I too lost my parents to the effects of their copy of ApoE 4 and the lack of scientific and public knowledge of how to mitigate or avoid the risk of heart disease and Alzheimer's. Your loss of both parents is truly a tragedy; I hope you give yourself credit for being a witness (even if from a distance) to their courage during their illnesses. They may have had risk factors stretching back to their early childhoods which you can now seek to manage, starting with your recent diagnosis of heart disease.

I also know that now there are many diagnostic techniques to give people very specific information on where and what type of heart disease they have, what medical or surgical interventions might be useful and most importantly, what we can do to reduce the effects, including support groups for dealing with the emotional effects. I hope you reach out to your provider team and ask for what they suggest, and also to your local American Heart Society, which may offer local groups of people who can be your sounding board for those days when you need one.

Let us know how we can help you; this is a forum of people who feel empowered to help themselves and others beyond what doctors may offer.

Re: Hi, I'm new

Posted: Mon Feb 17, 2020 3:13 pm
by Berri
Dear Andrea:

NF52 is right. She is a terrific resource for all of us. The research center at Harborview is taking new clients, I believe. I have an appointment with them next week. You could check with Terry at 206 321 7058.

Best of luck!

Re: Hi, I'm new

Posted: Tue Mar 03, 2020 3:51 pm
by NF52
alveatch50 wrote:I have 4/4. I'm 53 with recently diagnosed heart disease. Both parents died of dementia. Happy to be here and soak it in.

alveatch50 wrote:Thank you for this post. I too am 53. I have 4/4. I have cardiac disease diagnosed without symptoms just this past year. I have 6 blockages on screening calcium cardiac CT. I exercise, I am vegan, I dont smoke, I dont drink. Despite this, my stress test was very positive with ST depression 3 mm, and chest pain. CT angiogram showed non obstructive disease, meaning I dont need intervention like a stent or bypass but the blockages are real. I had been concerned about alzheimers since I received my 23andme results 7 years ago. The urgency has heightened now and I am researching and anxious about how best to manage my health. In addition to this, my anxiety has increased as I feel my cognition may be slipping. I do have the book by Dr. Breseden and have been reviewing this. I am a physician myself and am selective regarding my health care providers. I live in Tacoma, Washington and I am not able to locate or accessReCODE/APOE4 knowledgeable doctors in my area that can guide me. My cardiologist and internist are well meaning but are not familiar with the significance of my genes. I am willing to travel if it is going to make a difference. Thanks so much for this website and for all of you. I was referred here by the facebook page apoe4.
Welcome again, Andrea!

I hope you don't mind that I took the liberty of copying over your detailed post from our Practitioner Review of Dr. Jessica Pena in NYC Re: Jessica Peña, MD / New York City, NY to add to your first post. Since you already have a post, it seems like a happy idea to bring these two together!

As someone with a sky-high Lp(a) level and family history of strokes and heart disease, I get your anxiety about both heart disease and AD. Anxiety is a thief who comes at odd moments to steal our confidence and toss us in what I have come to think of as "funkdom"--a place where we have to battle our learned pessimism that problems are pervasive, personal and permanent, and instead seek to reframe them as temporary (maybe), specific and open to external interventions. (I credit Dr. Martin Seligman of the Learned Optimism and Positive Psychology movement for that wisdom.)

So I won't begin to second-guess your choices as a physician. I will offer some possible examples of good outcomes for similar people though. I knows of several ApoE 4/4 women around my age (almost 68) and years older who have similar histories of "everyone died of heart disease before they could get Alzheimer'rs" or "everyone got dementia in their 60's" who are cognitively healthy (and have proved it on repeated studies in preventative clinical trials), working in demanding professions and finding time for advocacy of important issues, travel with friends and family and time with grandchildren--including regular care of up to five at once! My assumption, which seems to be supported by the Finnish FINGER study and some of the meta-analysis done for the Generations Trials (of which I was a participant) is that we don't share the same environmental, dietary, health-monitoring and pollution risks of our parents. My risk, according to this study is about 35-55% for a diagnosis of MCI or AD by age 85. At 67, I expect to sail past the gloomy assertion that I would be diagnosed with Alzheimer's at age 68, and believe you will also in 15 years.

If I could go back to age 53, I would do what Stavia, the doctor with ApoE 4/4 and a history of 2 severe TBIs who wrote the Primer chooses to do: Follow the strategies she recommends, find purpose and joy in life, travel as often as possible (and eat the local pastries when in Portugal--a day of those won't doom us). As the Stoics advise, we cannot control the outcome of our journey; we can seek to be well-prepared for possible adventures and choose to surround ourselves with those who make they journey easier.

I hope your local cardiologist is informed about ApoE 4 and can offer you some specific suggestions. Others here are likely to share their experiences and suggestions.