How I dealt with a diagnosis of dementia

Iris L.

I was originally diagnosed by my neurologist as having cognitive impairment not otherwise specified. This means that the memory loss and other cognitive issues are due to another disease condition besides Alzheimer's Disease. Since I had had memory loss for some time, I was okay with that diagnosis. It is on the same order as MCI,and I became complacent.

I had gone to a major university medical center for a second opinion, and decided to consult one of their geriatric doctors for my general medical care. After a few visits, the head geriatrician declared to me, "You have to accept that you have dementia!" That one sentence threw me into a deep depression. All I could think of was that I was going to die soon! Fortunately, I kept in contact with the members here. They brought me out of the depression. I knew that I had to think of this diagnosis in a different way. Everything that I heard about dementia was negative. But I had never been a negative person, and I had had many accomplishments in my life. I could not allow my life to change now.

All of a sudden it came to me. I had been a pioneer in several areas of my life. I could still be a pioneer. I would be a pioneer in dementia. This changed my focus. I would not be a victim, but I would be a pioneer in this stage of my life. I would do what pioneers do, which is to find new ways of doing something. I did not have to be passive, but I could be pro-active in my own care. This is what I set out to do. And I am still in the process of doing. The new ways of doing I had already learned as Best Practices. I became serious about Best Practices. I learned from the members what legal and financial steps I needed to take. I decided that as a pioneer, I had to become pro-active instead of reactive. I can't say it's been easy. But I feel good about myself, very good.

After a few years, and after repeated computer cognitive teats and an Amyvid PET scan, my neurologist determined that I did not have Alzheimer's Disease at that time. My diagnosis remains cognitive impairment nos. But I still feel like a pioneer, because I am taking charge of my own care as a person with memory loss and other illnesses.

Iris