Читать книгу ALZHEIMER'S: Don's Faithful Journey - Kyle Talbott - Страница 5

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 the doctor’s office that day scratching my head and wondering to myself if I heard him correctly. Did I misunderstand? Could my doctor be incorrect in his findings? So many questions now arose. One simple answer of a diagnosis was given to me for my forgetfulness. My wife, from who I would expect nothing less, immediately went into overdrive trying to learn all she could about this disease. She was ready for the fight, and this time it was for me. She is no stranger to giving up or giving into a diagnosis, as I explained earlier. Indeed, I say, “WE” had to fight because when we are faced with any roadblock, it requires a 100% team effort. This is all part of becoming one. We are a unit, and always in each other’s corner. It was not long before Christy was hot on the trail of medications or therapy for Alzheimer’s disease. We found out very quickly there were no medications to alter the disease’s progression, or any therapy. It was also true that I was going to die, which the doctor had alluded to when he mentioned the life expectancy for a person my age receiving an Alzheimer’s diagnosis. Despite this information, Christy pressed on with determination to find a way. If there was not a way, by golly, we were going to make one.

My doctor at UVA moved. He told me the best chance for us would be to go either to Duke University in North Carolina or Johns Hopkins in Baltimore, Maryland. We chose Duke, simply because of the easier commute. My doctor made the arrangements for the move, and we were off to Duke. Once we arrived, my new doctor told me he respected the diagnosis from UVA; however, he wanted to redo the testing. He wanted to verify the diagnosis on his own. Once again, I felt that euphoria of hope. Could it be that my first doctor could be wrong? Have Christy and I gone through all of these horrible emotions for nothing? Could it be something so simple that I get cured with a shot or a pill?

A month went by and all of the tests came back. The doctor wants to meet with us right away. When we met the doctor, he tells us I have good news and bad news. The good news is your genetic profile does not show any sign of this disease to be familial or passed down genetically. The bad news is you do, indeed, have Alzheimer’s disease. This time my heart dropped. By now, Christy and I absolutely knew what Alzheimer’s was and knew exactly what the outcome would be. I expected my doctor to give me some great words of wisdom or some magical utterance that would make everything okay, even though we knew it was not going to be okay.

We stayed with this doctor for a while, until he retired. Then we searched again to find a doctor to take on my case. By this time, Christy was well versed in her search for a solution and discovered Trial Match® through the Alzheimer’s Association, on their website. Trial Match® is a place we could enter our information, and find clinical trials around the country that matched our needs. Trial Match® led us to Johns Hopkins in Baltimore, MD.

My expectations, by this time, were not very high for the medical world. They could figure out what was wrong with me, but they did not know how to fix it. This does not make any sense! How could a disease be around for many years and the world of medicine not know how to combat or at least slow the progression? For those of you a little more seasoned than others, terms like hardening of the arteries might be familiar, or he is just getting senile. Maybe you said it yourself, “he or she is just getting old,” as if this disease is something expected, like a rite of passage once you have reached a certain age. I am here to tell you it is NOT part of the aging process. It should certainly NOT be expected. Perhaps, this is the attitude that the medical field held for too long, and that is why we do not have a cure yet. Do I sound angry? If I do, then good, because I am! Any other major disease that has hit this country has been met head on by the medical world with seemingly great results. Since this disease tends to show signs later in life, people tend to push it aside with the disclaimer, “I’m sorry, but at least they lived a long life.” What does “lived a long life” mean? Who has the right to say what is long enough? If the doctors were correct with their calculations of my untimely departure, I should have already been gone. I certainly would not deem that a “long life.”