My perception is my reality. Facts are optional.
Somebody said that at a meeting a few months ago and it got a laugh. Of course it did. He said it at an AA meeting and the only thing this alcoholic woman is addicted to more than alcohol is escape from reality.
Jeez. Any port in storm as long as that port lets me pretend like there is no storm.
Our dad was diagnosed with Alzheimer’s disease when he was 75. He’d shown signs of dementia for a few years before that, but this was in the early 80’s when there wasn’t much known or written about Alzheimer’s. The prognosis hasn’t changed since then nor has the method of diagnosis. In 1982 as today there was no effective diagnosis or treatment for Alzheimer’s disease. No one survives and a correct diagnosis can’t be made without an autopsy.
We were young, my sisters and I, and had to make choices that our mother wasn’t able to make. Our parents weren’t kids when they started their family; Daddy was nearly 50 when my younger sister came along. My way of coping was oblivion. I muscled it through during the day and drowned the pain at night.
In the end, our dad sporadically recognized us. He knew we were people he should know, but he didn’t generally know why he knew us. The exceptions were his grand-daughters. With them there was a spark that remained throughout the visit. Maybe he thought they were his little girls. I don’t know. I feared that he thought we’d abandoned him, that we didn’t care. We never knew what he understood and what he believed. Theories that he was aware but trapped in an uncooperative mind devastated us.
Our dad died in 1986. For over 10 years I smoked 3 packs of cigarettes a day. Why didn’t I quit? Well, hell. Might as well die from lung cancer instead of Alzheimer’s. I drank quarts of vodka, boxes of wine, and 12 packs of beer. Why didn’t I quit? For heaven’s sake! Might as well die from liver failure as Alzheimer’s.
Nutty thinking? Yes. But it was the flag that flew over my life.
In the mid-90’s, the company I worked for did construction work at a local senior center where a medical group visited periodically to do genetic testing, screening for Alzheimer’s disease. I wondered whether I would subject myself to such testing. The thought was immediately followed with an “ABSOLUTELY NOT! If I found out I was going to get Alzheimer’s, I’d commit suicide.”
That was 20 years ago and it’s lucky I didn’t dare to get tested. The genetic markers they were aware of then were misleading and only showed a tiny slice of the picture. Today, scientists are aware of more than 20 gene variants that affect the chances of a person developing late onset Alzheimer’s disease which is what our dad had.
The effects of these genes are subtle. Different variants act to slightly increase or decrease the risk of a person developing Alzheimer’s disease but do not directly cause it. These ‘risk genes’ interact with each other and with other factors, such as age and lifestyle, to influence someone’s overall risk of getting the disease.
I’ve become more knowledgeable about these genetic markers because my friend Chris in Kansas shared information about the Alzheimer’s Prevention Registry (endalznow.org) which encourages genetic testing. According to their website: “Volunteers are critical to Alzheimer’s disease genetics research. The more genetic information that researchers can gather and analyze from individuals and families—both healthy volunteers and those who may be at risk—the more clues they will have for finding additional risk-factor genes.”
I signed up to be part of their research program a few weeks ago; the test kit made it to my house last week. It has sat on the pantry shelves, right next to honey roasted nuts, for the past 5 days. I’m not sure why the hesitation to spit on the stick and send in the kit. They won’t tell me one way or the other what they find although the results might generate medication trial requests. Or I may never hear from them.
The days of turning up the volume on Sirius to drown out the weird engine noises have passed for me. I suspect adding my saliva to the National Institute for Aging’s genetic research programs work more for my kids and grand-kids than for me. And that makes it important for me to participate.
If you don’t want to participate in genetic research, please support your local Walk to End Alzheimer’s. My sisters and I participate in the Travis County Walk. The money raised goes to research on the disease and treatment as well as assisting persons with Alzheimer’s. To donate to our team, go to https://p2p.charityengine.net/txalztraviscowalk/Fundraising/team/Daves-Girls and make a donation!