Designer Genes

My interest in dementia has led me to a variety of resources, including The Alzheimer’s Association. They’ve provided support and guidance throughout my journey with my mother. I receive a newsletter from the Greater New Jersey chapter, and there was an item of interest in the Spring 2012 issue.

In the middle of the state of NJ there is a Memory Enhancement Center where a study exploring the genetic risk of developing Alzheimer’s is being conducted. As the child of someone who clearly has dementia, I have already pondered the obvious questions: “what if this happens to me?” or “will this happen to me?” My mother may not have Alzheimer’s (we’ll know after she passes) but her older sister did die from it. In addition, my mother’s mother had “organic brain disease” indicated as a cause of her death in 1980. Grandma Nettie had suffered speech aphasia several years before she died, finding it difficult to speak English, reverting to her native Yiddish when last I saw her alive. With the genetic cards apparently stacked against me, at least on my mother’s side, I contacted the folks running the study. An ideal candidate, I really wanted to know if I had the genetic predisposition.

Now, first, let me clear up a few things:

1) Having the suspicious gene does NOT mean a person will definitely develop Alzheimer’s. What it does mean is that the likelihood that they will develop Alzheimer’s is higher than for those who don’t have the gene. And conversely, not having the gene doesn’t let you completely off the hook either. You just have better odds in favor of holding on to your faculties as you age when managing other risk factors, like lifestyle.

2) The results of the genetic test may NOT be shared with your insurance company. This is why we have privacy laws in this country. Keep it to yourself and your carrier will never know.

3) The test does not hurt. You don’t even need to give blood; the inside of your cheek can be swabbed to derive the necessary material to test your DNA for the gene.

Since I had to be in New Brunswick for a conference the first week in May, I contacted these folks and offered myself up for testing.

First, they did a cognitive test. I am very familiar with these, as I have been with Mom on numerous occasions as she was subjected to them.

What’s today’s date? Who’s the president? Remember three words: “apple,” “table,” “penny.”

Please write down any sentence that comes to mind.

“I ate the apple and put a penny on the table.”

Copy a line drawing of two intersecting pentagrams.

Can you remember the three words? Yep: apple, table, penny.

I scored 29 out of 30 because I exaggerated the way the pentagrams were drawn on the test. I showed the tester how the intersections were not clean (as a graphic artist, I am a stickler for precision), and told him he owed me half a point.

Then he swabbed my cheeks and told me he’d call with the results. It could be two days or two weeks.

Following some delays, I finally received word: I DON’T HAVE THE GENE! Yippee!

Again, this is no guarantee, but my odds of aging without dementia just took a 20 percent uptick. Add healthy lifestyle and the odds continue to improve.

If you are the child of someone with dementia, you might want to consider participating in a study. We are the generation that could well escape the fate of our parents. But research must be done and subjects are needed.

Of course, you may not want to know. Ignorance may be bliss, for a while. And you may be so burdened with your loved one’s care that you might not have the time. But consider it. You may be lucky, like me. You may be unlucky. But either way, you’ll have one of many answers to a nagging question and you’ll be helping researchers find the answers to the bigger questions. Hopefully, one day the answer will be “Yes! we HAVE found a cure for Alzheimer’s!”

If you want to explore trials that are currently being conducted, I encourage you to go here: http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp You have nothing to lose. You may even find a cutting edge treatment for your loved one. Whatever you decide, I wish you well and hope you find the answers you need.

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About traceysl

Digital Artist, creative technologist, problem-solving lover of life. Having cared for my mother, who died on April 14, 2015 after a long fight with dementia, I have refocused professionally to helping others through my experience. I have started a company called Grand Family Planning to provide unique Family Support Services. In this way, I share my knowledge and give meaning to the tragic turn of my parents' journey through the misery of dementia.
This entry was posted in aging, caregiving, dementia, Family, life changes, research. Bookmark the permalink.

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