Dear Friends,

I was first introduced to Alzheimer’s disease (AD) in the early 1960s, at my Aunt Shelly’s wedding. She was 45. Her brother, my Uncle Arthur, aged 58, never looked better, but couldn’t recognize anyone, except his wife and children.

It was the beginning of a real life experience that would change me forever. Alzheimer’s has victimized my father, three of his brothers, two of his sisters (six out of seven siblings) and my cousin.

In April 1977, at the request of Dr. Robert Katzman, I placed my signature on the Certificate of Incorporation of the Alzheimer’s Disease Society (ADS). Katzman, at the time,was at Albert Einstein Medical College, and was the preeminent Alzheimer’s researcher in the U.S. if not the world. At that time only a handful of people were working on the problem.

ADS was being run from my law office at 32 Broadway, NYC, with my office staff and me fielding calls and providing what little information and resources were available at the time. Within a year, we learned of the existence of six other Alzheimer’s organizations which had formed around the country.

Robert Butler, MD, founding director of the National Institute on Aging (NIA), called the seven groups to Washington, D.C. with the goal of forming a national organization. He advised us that our mission was to educate the public and government about this terrible disease and to advocate for research and care on behalf of people with AD and their families.

We were fortunate to make contact with Mr. Jerome H. Stone, who at this time reached the mandatory retirement age as CEO & Chairman of Stone Container, a NYSE company. The seven groups agreed to form a National Association and I had the distinct privilege of having my signature as Incorporator, and Treasurer. I remained as President of ADS, which became the NY & NJ Chapter, until a separate NJ Chapter could be separately formed.

Now that I’ve explained my long history with Alzheimer’s, it will be easier to understand why I decied to take the genetic test that would determine my ApoE profile and my risk of developing the disease. The decision to take the blood test was easy for me and involved very little contemplation.

When the blood was drawn I was told that the results would take about a month. After returning from a ski trip in February I decided to call Dr. Sam Gandy, who said he was just about to call me. He advised me that I must make an appointment for another hour of counseling, before getting the results. To which I replied, “I spoke with your secretary and made the appointment, but I am concerned because she set up my appointment with Dr. Kevorkian.” I heard a short snicker on the other end and then SILENCE.

The second hour of genetics counseling dealt mainly with what these results meant and what they did not mean. As I recall, I was told that the ApoE-4 gene did not mean that I was definitely going to get Alzheimer’s, but that if one was going to get the disease, it was more a predictor of the possible age of onset. ApoE-3 was “neutral” and ApoE-2 was the good kind and might even be somewhat protective. Since both of my Mom’s parents lived until 90, with clear minds, I was hoping for a 4 and a 2.

For me, KNOWLEDGE IS POWER and being in denial about this disease will not prevent it. I have a wife, children and a successful practice which are highly dependent on my mental ability and any serious change in that ability can have serious consequences. Many of my clients are longtime friends as well, and I feel that I have a responsibility to protect them as well as myself.

When my Dad died in 1973, the family agreed to a brain autopsy, though it was contrary to our religious beliefs. Dr. Katzman told us that Alzheimer’s brain tissue was scarce and was needed for research. When I received the results from the ApoE test, I called the Burke Center, where Dad’s tissue had been stored, and inquired whether it could be tested. I was informed that a freezer failure destroyed the samples. By having my test results we have valuable information for my children and future ancestors, as well as myself. Whether they choose to use it is up to them.

For the most part, I try to maintain a healthy diet and avoid medication wherever possible. However, having the knowledge that I possess one ApoE-4 and one ApoE-3 gene, which have been linked to a greater risk of developing Alzheimer’s disease, inspires me to be even more aggressive in my attempt to avoid or delay this disease.

Don’t get me wrong, I would not take arsenic to avoid Alzheimer’s, but I am taking certain medications that I would not ordinarily ingest. A few years ago, with a total cholesterol of about 124, I began Lipitor® because there were a number of studies which showed that it might delay the onset and slow the progression of Alzheimer’s, in addition to helping prevent heart disease. Since I experienced no side effects, I’ve continued this statin drug. If the test results had shown no ApoE-4 gene, I would not be taking this medicine.*

I have discussed with both my children whether they would consider being tested at some time in the future. They are very aware of the family problem and I’m proud to say that both have performed volunteer work for the NYC and Atlanta Chapters of the Alzheimer’s Association. They both felt that they would be interested in being tested. However, it represents a distant threat which can be dealt with in the future. I think they feel that when they approach the age of onset, there will be a treatment or cure. Let us pray that they are right.

Lonnie Wollin is an attorney in private practice in New Jersey. He is a Director Emeritus of the Board of Directors of the National Alzheimer's Association, and the founding director of the New York City Chapter.

*Editor’s note: Although there is some evidence that taking statins may reduce the risk of developing Alzheimer’s or Parkinson’s disease, we encourage you to consult with your physician. Please note that the results of a recent study of patients with mild-to-moderate Alzheimer's disease showed that taking Lipitor^® with Aricept^® produced no significant benefits, compared to placebo plus Aricept^®. There is still much work needed to be done in this area.

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