Mary - Fighting EOAD
Sharing my story is very difficult. You see, I am 51 years old and have Early Onset Alzheimer’s Disease. I watched my mother’s sisters die of it, one of them with early onset. My mother is in late stages now at age 80. I knew the signs and symptoms so I was lucky to be diagnosed so early. Or am I lucky. The emotional roller coaster I am on is one that I would be very happy to be off. Feeling myself slipping from day to day is horrible, frightening, and lonely.
None of my friends want to believe the diagnosis and think if they ignore it I will be fine. My husband is not sure he can take care of me, my teenage children angry because I (the disease) has changed our seemingly perfect lives. Sometimes I am at peace knowing that due to my faith I am being refined for eternity. Other times I am so full of anxiety my chest beats and I feels like my heart is being ripped out. I am not taking traditional meds because they don’t work and trying experimental supplements and diets which is very hard for me to manage and don’t know how long I will be able to do that. I spend hours researching reading articles, trying to find doctors and nutritionists that can help me. Times I think I will be the first to beat this with this diet and supplements and other times that I think this isn’t working, why bother.
I wish I could change things and know that I can’t. I know that even my faith will be taken away from me and I just feel so broken. I cry, a lot. I have nightmares. I heard an expert say that there are those that live fulfilled lives and do well and others just give up. I try to fight and live a full life but some days all I want to do it cry. Every thing I worked for, fought for, it’s all slipping away. At a time when I thought I would start really having fun and enjoying my life, it’s all slipping away. I can’t find words to make people explain what that does to a person. Maybe it would be better if I didn’t know, I am not sure. I tell myself to live in the moment and enjoy what I have and sometimes get stuck in the “why me” self-pity mode. It is hard. It is so painful. My mind and heart aches with sorrow. There must be answers. I can’t even bear the thought of this happening to my children and know I have to try everything I can to find a cure now. My goal is to keep sharp enough to watch my son graduate from high school in 2 1/2 years.
I never imagined that this is what my life would come to. No one does. Alzheimer’s is a beast, a horrible, horrible beast. I or someone needs to slay this beast. Please join me in this fight against AD. I have to have some hope to keep fighting. Is there hope?