Why can't I share my recent diagnosis?





I am a perfectionist! I am scared to tell people that I'm not perfect! I have done nothing wrong to deserve this diagnosis. I am a good person with a bad diagnosis. I am scared, and embarrassed, and don't want to lose control of my mind and life. It also has shortened my life according to everything I read about it.  I have begun to tell friends and former colleagues about my recent diagnosis of Alzheimer's. It is difficult for me to read, but a new stage in acceptance is beginning. The diagnosis became more real to me when I received the positive test results after my Spinal Tap (isn't that the name of a rock group or movie?) My doctor ordered an outpatient procedure my spinal fluid was removed by a syringe in my lower back and examined for evidence of Alzheimer's. Unfortunately, the results came back positive. Well, that was four months ago and I am still processing the results. 


How does it make me feel? Mad, upset, frustrated, and wondering 'Why Me?' I am a good person who helps others and tries my best to succeed in this crazy, mixed up wonderful world. I have always prided myself on being a: GOOD girl, student, friend, teacher, wife, mother, and grandma just to name a few. Why am I being singled out with a disease that leads to memory loss and retreating from society? I am social and like to be around my family and friends. I like to learn new things and have many school degrees and educator licenses to prove it. I like to take long walks, go to museums and the theater. I like to travel, try international cuisine, and learn new things. I don't want to end up in a rocking chair staring out the window wondering who and where I am. That scares me!



My husband is worried too. He talks about the future. Where is the best place to live?  How he is going to find caretakers?  I want to stay home as long as possible. I don't want to end up in a nursing home staring at the wall spending a lot of money. My husband is starting to tell friends, but I can't even say the word that begins with an 'A'. He does ask me first if he can tell them. It helps him to talk about this new situation with someone else. I always tell our friends, "Don't worry about me. I'm enjoying each day and feel fine. I am seeing a Specialist and am on medication." That is the truth!

I may never share my diagnosis on Social Media. That is my place to share photos, vacations, and life experiences. I don't want to share a sad diagnosis and make people feel bad or maybe even feel glad they don't have it. That is human nature. It is better that someone else is suffering than me. They will find out about it when I'm gone or maybe not at all.

There is HOPE in the news today! Congress held a Hearing about improving the availability of Alzheimer's drugs and care. It lasted for an hour on TV, but we quit watching it after five minutes. The sad family testimonials hit too close to home and make us scared of the future. I hope the result of the Hearings is that more care and medicine become available for Alzheimer's patients. I will try to be patient with a miracle drug to cure this horrible disease. Like Scarlett O'Hara, "I'll think about it tomorrow." I'm going to take a walk now and go out to dinner. 

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