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My View: Undefined territory

August 17, 2015
Photo of Dr. Jennings
Mary Jennings, D.D.S. 

Christmas before last, my older brother John was seemingly his normal self — large and in charge, witty and charismatic. Today, his wife has to watch him take a shower to tell him which soap goes where. He just turned 58 and has rapidly advancing “early onset” or “younger” Alzheimer’s.

Like all Jennings, he is opinionated and highly verbal. We did not realize when he kept telling stories over and over again that there was really much wrong. We happen to like hearing our stories over and over. His co-workers must have understood at some level because after an amazing 35-year career of diagnosing and treating sick oil wells internationally for Halliburton they fired him for disagreeing with his boss. He was devastated. No one really understood how that could happen with such an intelligent, hardworking and amiable soul. Now we do.

I am shocked and heartbroken. This was my childhood fearless leader. Mr. Action. He rappelled, wrestled, played football and excelled in virtually anything he did. He developed computerized protocols for treating oil wells and was finishing writing a book. In my ever-so-awkward teens, I envied his easy way with people, and I actively studied him. Like everything we faced, if he could do it then so could I. And here we are today.

Alzheimer’s disease is caused by the development of amyloid plaques and neurofibrillary tangles that interfere with connections between neurons and cause neuron death. Younger-onset Alzheimer’s affects people under 65. It can start as young as 30 but more commonly begins in patients in their forties and fifties. It is estimated that less than five percent of the 5 million Americans with Alzheimer’s have this type.

The cause of younger Alzheimer’s is still under investigation. Everything from head injuries to genetics is under the microscope. It is thought that most people with younger-onset Alzheimer’s have the common form of Alzheimer’s that will progress in the same way it does with older people. A small subset of younger-onset Alzheimer’s patients has the genetically based familial Alzheimer’s disease. This type is due to mutations on chromosomes 1, 14 and 21 that cause abnormal proteins to be formed that somehow form the plaques. Apolipoprotein E-e4 was discovered in 1992 and is the first gene variant found to increase the risk of Alzheimer’s. Still, having this mutation does not mean that the person will develop the disease.

Diagnosis of younger-onset Alzheimer’s is difficult. It took us 11 months to get John’s diagnosis. I suspect that if the advancement was not so rapid we would still be undiagnosed. There is not a lot of training for physicians about younger-onset Alzheimer’s so it is often missed until late in the disease process. There is no cure for any type of Alzheimer’s but there are medications available to help slow the process for some. There are promising drugs in the research pipeline. I have no arena to speak to our M.D. friends but I can ask you to consider younger-onset Alzheimer’s into your differential diagnosis when dealing with your friends, family, co-workers and patients.

It is hard to talk about literally losing one’s mind. Here are today’s thoughts. I will support my brother and family every way I can. I will have to fit them into my life in a different way. I wish I could take it away or make it all better. I mourn for his loss of self and our loss of him.

I need to stop screaming, “I’m doomed, doomed, doomed” every time I misplace or forget something. I am sorry to tell you, but I do! I am going through a natural phase of irrational self-worry. It will pass. I reassure myself that this is undefined territory and that life, at some level, is a crapshoot. I know that the research is just not stable and even if it was, fate so often plays a funny hand.

I need to call my broker and friends at Washington Dentists’ Insurance Agency and get professional advice. I must make sure that my retirement plan and insurances are set right to cover this new contingency. I am sure they have suggestions that would never occur to me.

I called the University of Washington Alzheimer’s Disease Research Center. I am in the process of volunteering as a lab rat. They need siblings to study. I want to help others and be on the cutting edge of this disease, so we are a perfect match. The researcher I spoke with said “everyone gets dementia if they live long enough. The brain wears out too.”

Most of all, I need to relax and do some Lamaze breathing. Life is beautiful albeit hard. Everyone has problems to face. This is ours. If we did not love we would not care. We must hold tight to each other and make every day above ground the very best for ourselves, and all the lives we touch.

This editorial, reprinted with permission, originally appeared in the March 2015 issue of the WSDA News, the publication of the Washington State Dental Association. Dr. Jennings is the editor of the publication.