We are now in our 7th year since my husbands 2nd opinion and confirming diagnosis of FTD in February 2008. That would be an average progression time for FTD, and for some, the progression period may be as long as 15 years before a person reaches a stage of incapacitation. Alzheimers normally progresses much more quickly. I believe this contributes to confirming my original opinion that his primary diagnosis is FTD, and Alzheimers is secondary if it exists at all. It has been an interesting experience for sure. It has also proven to me that if we dont try to reject or even just tolerate a challenge but instead embrace it and go with the inevitable whether a disease or an unexpected change, we can face any challenge in life. My husband is the hero here. He is the one who has demonstrated a patience, courage and grace through it all. It is as if he looked at it as just another battlefield only this time instead of playing the part of a sniper with an assignment to kill, he took the disease by its hand and said, Ok, if we have to live together, we are going to do it this way....my way. In the beginning, it was all about research, so we could learn everything that seemed to be available about this unfamiliar diagnosis, which unfortunately, was even unknown to most of the general practitioners in our lives. We quickly moved into brain training techniques in an effort to counter the progression. We ordered the brain training materials through public television, and Jerry used the technology daily. At the same time, we arranged for a treating psychiatrist to address symptoms that affect daily behavior, since some were already present. In fact, those behavior changes are what triggered us to seek diagnostic testing in the first place. It was never a memory issue, as would have typically been a symptom of other brain diseases. He was displaying some very abnormal behavior. For me, abnormal behavior is simply behavior that isnt typical for that person. It isnt about comparing ones behavior to another persons behavior. We all have established a normal behavior for our unique selves, and when the behavior changes and it cant be justified by mid life crisis or some other event in life, it is probably time to have some testing done to rule out a serious problem. Finding a psychiatrist was the easy part, because we were blessed to have a good friend and colleague who is world renowned, and who would play the most important role in our new adventure. Throughout the years, I have shared many patients with his being the treating psychiatrist, and my being the behavior expert who worked on modifying abnormal behaviors. We decided together to take care of legal issues while husband was of sound mind. In our case, it involved updating and modifying our family trust. He officially resigned as a trustee of our trust and from the boards of our corporations. Basically, we put me solely in charge of everything. We had seen and heard too many stories about senile old people being robbed of their hard earned assets due to making foolish decisions in later years. When you know the area of your brain which affects your ability to make reasonable choices is damaged, it seemed best to just take care of that problem right away. Once the details were taken care of and a plan was under way, my husband began working daily on trying to slow the progression of FTD. He spent a lot of time with the brain training which was usually at least twice daily for a couple of hours each session. In the meantime, I researched on line for everything I could find about treating FTD. He and I together began selecting vitamins and minerals to add to his daily intake of medicine. Once everything was in place, it was time for me to address my feelings. No more Dr. Joyce Swineheart approach to helping a patient. This was my soul mate. I finally let go of all of the emotions I had been holding inside from when I first received a phone call from the neurologist at UCSD who gave me the bad news in a cell phone message when I was having lunch at a local restaurant, while Jerry was out of town with a close friend. When he and George returned, I then had to tell him, which he chose to have me tell him with his friend present. That was good, because his friend offered him a lot of support when he first heard the words that UCSD had confirmed the diagnosis given at Charlotte N.C. Medical Center and UCSD had added Alzheimers. So...George was gone, our plans were in place, and it was then I scooped up my imagination and I let it take over as I visualized the next few years of our lives. Knowing the downside of brain diseases due to my career, I didnt leave any possible tragic outcome out as I conceived in my mind where we were headed and what would be happening over time. I lived through the day I would have to choose out of home care and weeped. I cried and cried and cried some more most of the time when I could cry without being seen or heard. I didnt want my children to worry. I didnt want my sister to worry. I certainly didnt want my husband to see me cry. I wallowed in my self created pity for a couple of months and then one day, I remembered one of my favorite songs ...One Day At A Time, and I asked God to take my hand, quelled my imagination and I took my husbands hand and we have since walked forward together as we have done all of our lives since the day we met. I decided we will show people how this is done, so that others can learn because showing others a better way in life has always been a part of how we lived our life ...regardless of the problems of the people who arrived at our doors. I have to add that much to my surprise and although we have made many changes in our daily activities, nothing much else has changed. Some changes have brought new experiences and more blessings. We have only grown closer as time passes. When you live each day at a time instead of fretting over what has happened in the past or imagining what is going to happen next, it becomes oh so much easier to embrace and enjoy life. Happy New Year to my Facebook Friends and Family! You have played a major role in making this journey easier.
Posted on: Sat, 03 Jan 2015 20:51:24 +0000
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