Why I Walk… Tom’s Story

I was diagnosed with Alzheimer’s just over a year ago. That being said, it was a long and painful journey before doctors reached that conclusion. It started years ago with a diagnosis of Essential Tremor. That didn’t seem so bad. I was told by doctors many people live with ET. Serving in a very public role as a pastor I was able to mask the ET symptoms through the use of medications. However, after symptoms worsened and after seeing many specialists, the diagnosis changed from ET to Parkinson’s. Well, that seemed worse than ET but I knew of many people who have lived with Parkinson – Michael J. Fox came to mind.

Then one Sunday afternoon my wife, Wendy, and I decided to get some steps in. It was a cold December afternoon so we went to the mall. After a few minutes of walking, I turned to Wendy asking, “Where are we?” “Where is our car” and “How do we get out of here?”

We returned to my doctor who ordered extensive testing. In December of 2018, I was diagnosed with Lewy Body Dementia. I was strongly advised by doctors to leave my job, “sooner rather than later.” Wendy and I were shocked! Life had changed abruptly in many ways.

Serving as a pastor and receiving the diagnosis just weeks prior to Christmas, I chose not to share the diagnosis with the congregation. I did share the diagnosis with a few people in my church leadership and family. I asked that they keep it to themselves until after Christmas. I was determined to celebrate Christmas that year the best that I was able.

After many tests and doctor visits, the Lewy Body diagnosis was changed to Alzheimer’s. Telling family, friends and hundreds in the congregation was difficult at best. Reactions ranged from denial to the “doctors have it all wrong,” to “Oh-we all forget things.” That being said, the overwhelming response was one of love, support and overall caring. For that I am grateful.  

Alzheimer’s is not a disease that can be clearly diagnosed by doctors such as heart diseases or cancer, leaving patients and family members often frustrated and confused. Recently I asked my doctor, “Which was worse. Lewy Body or Alzheimer’s?” He looked at me and answered in four words, “You don’t want either.”  

For many getting a diagnosis of Alzheimer’s or Lewy Body Dementia is filled with ups and downs, highs and lows… like a rollercoaster ride that I would just as soon get off of. This is why we need continued research into Bio Markers that will allow doctors a quick and accurate diagnosis of these terrible diseases.

I resigned from my call to serve as pastor of a very active congregation. I loved my job, I loved the people I worked with and the people I served. Life changed abruptly. It changed from busy days and busy nights to finding ways to keep busy and useful. Shortly after leaving work a friend called me and asked if we could have coffee. That’s when it became all too real. A calendar once full of day and night appointments now was empty except for doctor appointments.

Alzheimer’s disease is a thief. It steals bodies and minds, but that’s not all. Alzheimer’s also steals identities. It steals the identities of pastors, parents, office workers, teachers, construction workers – people of all vocations. When we lose their gifts and their contributions to society, that hurts us all.

Shortly after relocating to be closer to family, Wendy and I took a drive. There on Golden Oaks Drive in Springfield, IL I noticed a sign for the Alzheimer’s Association. A few weeks later I pulled in the driveway and found the courage to enter the office.

Here’s what I found. Two caring staff members who sat down with me and really listened to my story. Staff who provided resources. Resources like:

  • A 24/7 phone support line
  • A  monthly phone support group (which has now gone to Zoom) and an outstanding leader of Alzheimer’s patients from throughout the state
  • A monthly group (now also on Zoom) meeting for caregivers and Alzheimer’s patients supported by the Alzheimer’s Association and Southern IL University School of Medicine
  • The offer to be supported by Care Navigators who help with decisions after one is diagnosed.

In conclusion, the day I pulled in that driveway, I found people who really care. People who return phone calls, most of the time in less than 24 hours, and people who offer love and support. That is why I walk.

– Tom

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