Month: August 2020

Dave Myers, an avid traveler and motorcyclist, was first introduced to the Alzheimer’s Association when his wife, Cheryl, was diagnosed with Early-Onset Alzheimer’s in 2012 at the age of 47. Dave spent the next seven years as Cheryl’s primary caregiver until her passing in April of 2019. Since then, his commitment to volunteering at the Alzheimer’s Association has been driven by the need to help others and share his story.

Dave has volunteered his time on the Walk to End Alzheimer’s planning committee, he conducts several programs and webinars as a community educator and also now sits on the Alzheimer’s Association Illinois Chapter Board of Directors.

Teaching others about Alzheimer’s disease and sharing his first-hand experiences with Cheryl has become his personal form of therapy. When asked why volunteering is so important to him, Dave said: “I have gotten through the last year by opening myself to others. There is something in providing hope, information, courage, empathy or just an ear to listen that helps you make it through the tough days.”

Getting involved with the Alzheimer’s Association has also allowed Dave to “feel like he’s part of something bigger”. He is using what he learned on his Alzheimer’s journey to educate others and to let people know that they are never alone. Thank you, Dave, for everything you do to in the fight against Alzheimer’s.

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

I support the Walk to End Alzheimer’s because as a caregiver I have learned a lot from the association and want to see more public awareness and education about dementia.

If I had to share just one important word about caring for someone you love with dementia, it would be patience. Patience is not a virtue I possessed prior to this and now realize that it is not something you miraculously acquire when placed into a situation like this. So it is a daily conscious effort to learn to be more patient. And the most important thing that I’ve learned since my husband’s early-onset diagnosis is that I knew nothing about dementia. Even though I had worked in healthcare for years, what I thought I knew about the disease as an outsider is very different from the reality of living through it.  Some of my noteworthy misconceptions were that it is a disease for the elderly, when in fact there has been a significant increase in the diagnosis for persons under age 65. I also thought that the disease is primarily forgetfulness when in reality it actually affects the patients thinking, behavior and feelings which makes communication more difficult. 

Not only the disease but getting to a diagnosis is a journey. A journey with an elusive and ever-changing destination. Although Tom currently has a diagnosis of Alzheimer’s dementia, there is a great deal of uncertainty as to when it actually began. We have gone to multiple doctors to get assessments and received various diagnoses including essential tremors, potential Parkinson’s and Mild Cognitive Impairment. In December 2018 a Neuropsychologist presented a diagnosis of Lewy Body Dementia. Although this diagnosis was difficult to hear, I have to admit that I had a suspicion of this from the reading I had done related to his prior testing and his presentation. Her certainty in this diagnosis and her sense of urgency for Tom to swiftly disengage from work also came as quite a shock to us and prompted us to make some rather quick decisions. Considering Tom’s profession as a Pastor and the time of year, just two weeks before Christmas, we kept the news to immediate family. Then after the holidays, we began a plan to leave active ministry at his church by the end of January. For us being publicly open about the diagnosis was appropriate, because we did not want to leave Tom’s parishioners wondering what happened if he left suddenly without a reason.  There was mixed reaction to the news including sadness, questioners and doubters. But mostly a lot of love and support.

Although finally hearing a healthcare professional be specific about a diagnosis was something we had searched for, now there were many more questions than answers. I must say that I saw, especially at the beginning, improvement in Tom’s overall health after leaving the daily stressors of full-time ministry. One of the most difficult things for me to watch was how sometimes he was treated poorly by others. I could see that he was slowing down and tasks once easily accomplished were now more time consuming and challenging. But to others who were unaware of his changing condition, this behavior leads to negative commentary and impatience from others. This is something that I fear will continue to happen as time progresses, with people that are not close to us, and it breaks my heart.

As with all things that happen both good and bad, life goes on and we do not get to select the timing. But God is good and there is always something to be grateful for. For us, it came in the form of becoming first-time grandparents just two days before Tom’s last Sunday sermon at the congregation he served. That was a great motivator for staying strong! It has now been nearly two years since that diagnosis and many years searching and the journey is still a winding road with an indecipherable map. The doctors continue routine monitoring and testing of his physical and mental status, and medication adjustments as indicated. There are great days and tough days, and with the complication of the current COVID quarantine, we try to find new ways to stay active.

We are still active in church, in our new hometown close to our adorable granddaughter. Tom continues to use his speaking gifts to talk about Alzheimer’s at various group meetings in the community. And has had the opportunity to stay in touch with some of his ministry colleagues. I believe staying connected to what he enjoys is very fulfilling for him and beneficial to keeping healthy. We continue to read and participate in support groups with the hopes of learning more and being able to cope with whatever lies ahead. The work at the Alzheimer’s Association is an important part of ongoing research and public awareness which will help to find a cure for this devastating disease. Please participate and please give.

-Wendy