During my life, I have been blessed with many relationships of sorts. Relationships come in many forms. We have relationships at work with our coworkers. We have relationships at church with the members. We have relationships in our community with various people, and we have relationships with our family (immediate and extended). You are now aware of the relationship I share with my wife, but I would also like to mention the relationships I have my son and my sister. I considered the relationship between my son and me to be normal, while he was growing up. When I use the word “normal,” I am referring to the father that was attending soccer games when possible, basketball games when possible, and being proud of him at every turn. As you may have noticed, I refer to attendance of his games as my schedule permitted or when I was available. I worked a lot of hours, and many times I was locked into the job and unable to attend each game. I made choices that prevented me from being with my family, during the many times that I truly wanted to be there. Most people would say this is normal, and advise me not to “sweat it.” However, there is some guilt from the choices I made when I look back at those times. For those poor choices, Kyle, I am truly sorry bud. Let me clarify that all of the choices I made at that time were to benefit my family as a whole. If I was given the ability to do it all over again, I think I would make a few decisions differently. Like they say, “Hindsight is 20/20.”
Chapter 2: SEEKING ANSWERS
The struggle to find a diagnosis.
Don’s Deep Brain Stimulator Surgical Trial
For Alzheimer’s Research at Johns Hopkins!
Now that I have given a brief history of life before the diagnosis, allow me to share with you the second biggest challenge Christy and I have faced in this short life. I was about 39 years old when Christy realized something was not quite right with me. I probably should have worded that a little differently…ha-ha. I played bass guitar in the church praise band, along with my participation in the community orchestra and theater. Christy noticed I was messing up my music, not just now and then, but often. I had been a pretty good musician most of my life, but I did not really know what was going on. What changed? After realizing something was not right, I agreed to go see her neurologist. He asked me numerous questions, and then suggested I go see a friend of his located at the University of Virginia (UVA). I agreed, and that was the beginning of this long (not so tragic) story. You expected me to say tragic, didn’t you? We will get into why I do not consider it so tragic a little later.
We went to UVA for testing. Boy, did they test! First, I was tested for seizures. I did not think I was having them, but the doctor said it was necessary to rule them out. For a week, I was in the hospital hooked up to a machine, with all kinds of wires coming out of my head. At the end of the week, the doctor (in charge of the seizure study) told us the good news…I did not have seizures. Unfortunately, he also told us I definitely had something wrong with my brain. His response, to say the least, was not very encouraging or satisfactory for an explanation as to what the heck was wrong with me. Next, they transferred me to the memory lab, where the testing started all over again. I felt like I was in high school again, and every day was like a final exam. I had so many tests, over so many hours, over and over and over again. The testing took place over a two-year period as we sought an answer to explain what was going on with me.
During my quest for an answer, I reported to the hospital many times for testing. There’s a funny story about me going to Charlottesville one day for testing. I had an appointment in Charlottesville at the Memory Center at 4pm. Christy was not able to go with me, so I decided it was a great day to ride my brand new BMW motorcycle to my appointment. The appointment was about a two and a half to three-hour drive from our home. I left with an extra hour to spare, and Christy gave me directions to ensure I would get there. I had a beautiful ride that day. I arrived with one hour to spare, just as planned, so I stopped at McDonalds® to have something to eat. When I was ready to leave, I did not recognize any landmarks around me. I had no idea where the hospital was located, from that McDonalds®. I decided to ask someone in the restaurant if they knew how to get to the hospital. The people I asked said they did not know how to get to the hospital from there; which I thought was odd because Charlottesville is not a very big town. So I asked someone else…same answer as before. I went to the gas station next door and asked the cashier. He proceeds to pull out a map of Virginia. I am thinking to myself, “How difficult can this be?” He showed me where we were located, compared to where I wanted to go, and I could not believe I was so far off. I was in Fredericksburg, VA, but thought I was in Charlottesville, VA. If you are not familiar with the geography of these two towns, they are about 70 miles apart. I thought, “What in the world am I going to do now?” By this time, I only had about 30 minutes left to get to my appointment. I called my doctor’s office and explained the situation to them. They told me I was the last appointment for the day. They continued to tell me if I arrived more than 15 minutes late, they would have to lock the door and I would miss my appointment. I hopped on my bike and I gave it a shot. I will not tell you how fast I was going, but if my wife found out how fast…I would have a lot more problems than just memory issues. Needless to say, I missed my appointment. I drove home that day with the realization that I really did have issues going on. There was more to it than just not being able to play music or remember simple things. When I got home that night, my wife commented about how early I was getting home. She told me she thought for sure I would have been arriving later. I told her what happened, and she vowed that would be the very last doctor’s appointment I would go to by myself. From then on, my loving wife was and is by my side for every appointment or procedure. One fun fact I learned from my trip that day is that I now know it is over 300 miles, from our house to Fredericksburg, to Charlottesville and back to our house. My wife still does not find the humor in that story. I find it hilarious, and it was an absolutely beautiful day for a bike ride <grin>.
After the diagnosis of seizures was ruled out, the doctors proceeded to rule out other things such as depression, infections, brain tumors, so on and so forth. Finally, the doctor tells me the diagnosis, “you have Alzheimer’s disease.” This diagnosis really did not affect my emotions, at first, because I really did not know what the disease entailed or even what it truly meant. Finally! We had a diagnosis, which brought a little relief to me, after all of the testing that I endured over the course of 2 years. He went on to say that my young age, combined with this diagnosis, does not bring a good outcome. He said my life expectancy would be about five to seven years, maybe a little longer if I was lucky. He suggested to my wife that the two of us go home and get our affairs in order, without delay. I still did not really grasp the magnitude of the conversation. I left