Diagnosis & Identity

I had the pleasure of speaking on the topic of Identity at the “Education Session for Advocates Living with Dementia” session at the 2017 Alzheimer’s Advocacy Forum in Washington D.C.

Alzheimer’s and other dementias can and will likely change many if not all aspects of your life.  Living with younger onset early stage Alzheimer’s disease has provided me with a very interesting dichotomy.  On one side of the Alzheimer’s coin, I am faced with a very grim realization that with my diagnosis, based on the statistical clinical evidence, will take my life in four to eight years if we don’t find a cure.  On the other side of the coin, I reject the statistics!  My diagnosis has added to an already very positive, fulfilling, purposeful life.  I now spend more time than even before with my wife (my caregiver), young adult son and daughters, and my senior parents.

I was working ten to twelve hours a day for eight years in the Information Technology business for a company that has all but forgotten me.  We draw so much of our identity by our jobs and with our diagnosis our identities are thrown into a tailspin.  I will tell you that I have the great joy and assurance that my identity was many years ago defined by my relationship with Christ.  This relationship has been key to my transition from my life before to my life after my diagnosis.

An important and critical part of my new identity is the work I have been doing with the Alzheimer’s Association advocacy at a state and federal level, fund raising and Alzheimer’s awareness building.   My family and I started a local Walk To Remember friend raiser event and my wife and I are on the Walk to End Alzheimer’s committee this year.

But it does not stop there.  One of my goals when I retired was to read more and read nothing about technology. I’m doing that now and It’s wonderful 🙂  I’m teaching myself to play an eight string ukulele.  I’ve become an avid gardener.  I enjoy with less guilt that guilty pleasure of playing video games on my XBOX One.

My wife Kim and I are active members of church and we are on the missions committee to support Christian missions around the world.  For many years Kim and I have also supported and continue to visit, as often as possible, a small childrens church in Negril, Jamaica called Palm Grove Church of God and Sunday School that helps the children of the community.  We’re going with my entire family this July one more time as we know that as my disease progresses it will likely be impossible to make this trip again.

As you can see, this and many more things help me identify who I am now, I am much more than my diagnose.  I hope this encourages you, you too can live beyond your diagnosis.

To learn more about how the Alzheimer’s Association is helping.  Go to Alz.org/livewell.

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