I am heartbroken and scared that both parents have AD
mom is a 3/3
dad is 4/4
both in their 80s when diagnosed
am I a cooked goose?
Does anyone else on here have two parents with AD?
Re: Does anyone else on here have two parents with AD?
Hi Catherine,
I'm so sorry that you both of your parents are now living with Alzheimer's. We have a vision of what our parents were like when we were little, how we viewed them as teens (!) and how we came to appreciate them and their quirks as adults. What we cannot envision is a future in which those people slowly change, or their memories of us change, and their needs change. I have known people whose parents changed very slowly (my mother was one) and those whose parents changed quite quickly.
I wish I would have realized then that I would have benefited from talking with someone about it other than my husband, who has infinite patience but didn't need that. I thought my job was to be in coping mode, and deal with some family drama (the word Alzheimer's was never spoken-"leprosy" would have been okay to share!) I think talking with someone about how to "step into their perspective" may possibly help. As an example, what was devastating to me--a brief forgetting by my mom of where my dad had gone--he had died 20 years before, plunging her into a protracted deep grief and depression--was immediately reassuring to her when I explained that he had died in 1986. Her response was classic: "I knew he wouldn't leave without telling me!"
As for you, you are not a cooked goose. In addition to my mom's dementia, my dad with at least one ApoE4 died of cardiac arrest at the age of 67, within a year of quadruple bypass surgery. My mom said afterwards that she had seen small signs of forgetfulness in the last year or two and thought, probably correctly, that his brain wasn't getting enough oxygen.
Yet his identical twin brother, who lived in similar circumstances right through the same college lived 7 more years as the busy owner of a hospital consulting business until his death from colon cancer (pre-colonoscopy days). Neither I nor my siblings, all in our 70's, have any cognitive or cardiac issues--probably because we follow a different diet, exercise more and have the benefit of statins (if we choose) and cardiologists, whom my dad didn't see until too late.
Your Apoe 3/4 status in MY generation has been shown to have only about a 20% chance of Alzheimer's disease, and APOE 3/3 only about a 10% chance. About 30% of people in my generation who were diagnosed as having Alzheimer's by trained neurologists and neuropsychologists based on the symptoms, who later donated their brains to science, were found to NOT have the disease. Most commonly they had vascular dementia, or signs of prior TBI, or non-specific inflammation. That's the same generation that grew up before the EPA with high levels of lead in drinking water, air pollution (I lived in an "acid rain" area) and unhealthy food that families welcomed as quick, cheap and "wholesome".
Your parents had no way to know that they had ApoE4, and no access to the science that is now exploding on how to reduce, manage and prevent its effects.
As someone probably close to their age, I'm sure that they would want for you what I want my three ApoE 3/4 adult children: Live full lives of purpose, joy, love and confidence that your future will not be that of previous generations.
Nancy
4/4 and still an optimist!
Re: Does anyone else on here have two parents with AD?
Nancy, You saved me. I cried while reading this. THANK YOU! and my PATIENT husbands says THANK YOU!
Re: Does anyone else on here have two parents with AD?
You and I both married the right men: patient, wonderful guys who appreciate smart women who look for answers and don't give up.
4/4 and still an optimist!
Re: Does anyone else on here have two parents with AD?
Kikiwebb,
You are in the right place. A site with tons of information, helpful people, inspiration, and especially hope.
-- Jane --
-- Jane --
(daughter, granddaughter, and niece of people who lived with Alzheimer's)
Functional Medicine Certified Health Coach
ReCODE 2.0 Certified Health Coach
(daughter, granddaughter, and niece of people who lived with Alzheimer's)
Functional Medicine Certified Health Coach
ReCODE 2.0 Certified Health Coach
Re: Does anyone else on here have two parents with AD?
I don't think you're a cooked goose at all! I'm a 4/4, I don't have two parents who had AD, but I do have two siblings with dementia, my other two siblings have passed, yet I don't feel I'm a cooked goose. My mom died of cancer before she had a chance to develop dementia and dad died from cardiovascular issues. In fact, no one in my family (parents, cousins, uncles/aunts, grandparents, siblings) except for a maternal grandmother has even made it into their 80s, 4s can be longevity challenged, yet I remain optimistic.
The fact that both your parents were in their 80s when diagnosed with AD tells me you have some protective genes going on.
From this paper Molecular and cellular mechanisms underlying the pathogenesis of Alzheimer’s disease
So you should be very optimistic now that we know so much about lifestyle interventions counteracting the deleterious effects of APOE ε4. Having two parents whose onset broke the average should be a boost.Clinical incidence and average age of AD onset was found to be 91% at 68 years of age in ε4 homozygous carriers, 47% at 76 years of age in ε4 heterozygous carriers, and 20% at 84 years of age in non-ε4 individuals [453].
-Theresa
ApoE 4/4
ApoE 4/4