Losing Me to Alzheimer Disease
I can trace my initial symptoms back to 2013 thanks to good record keeping of all the narrative summaries of my doctor's visits. I was told that such things as misplacing keys and glasses were part of aging. I set up an appoint-ment and spent an entire day undergoing extensive cognitive testing. The results proved that I did have cognitive deficits. I finally had an initial diagnosis of Mild Cognitive Impairment. I then made an appointment with a neurologist for further evaluation. After an MRI of my brain and additional testing, I had a diagnosis of Posterior Cortical Atrophy. I opted for an amyloid pet scan which turned out to be a very good decision. The scan showed the the amyloid and Tau proteins were diffused throughout my brain. I now had a confirmed diagnosis of early onset AD.
So now my husband and I have started on a new journey into the unknown. We have had more questions than answers such as how quickly will this disease progress. When and how do we share this diagnosis with our family and friends and how will they react to our new reality. What do we need to do now and in the future to take care of both me as the patient and Chuck as the caregiver. With my legal background, the first thing I did was to revise my husband's and my legal documents to ensure that we both had competent individuals to serve as executors and Power of Attorney. We then shared my diagnosis with our friends, neighbors, and our church family. I was overwhelmed by the love, understanding and support we received and continue to receive. After the diagnosis set in, Chuck and I have experienced all the understandable emotions of sadness, anger, frustration, disbelief, and eventually acceptance. Most of my difficult concerns include: Will our friends slowly or eventually pull away from us as the disease robs me of certain abilities? And, will happen to me if Chuck predeceases me? With the progression of the disease, I can no longer read. I often have to rely on Chuck to read certain and important things to me. Music has always been a very important part of my life and defined who I was since I started playing the flute over 60 years ago. I can no longer play difficult music and my new reality is I am not confident enough to play in our annual cantatas at our church. I miss that more than anything else. I am grateful, however, for those opportunities to help in any way I can at church.
Chuck and I volunteer with the Alzheimer Association in Dallas to help raise funds for a cure for AD. And even though the cure may not be found in my lifetime, we remain confident that some day future generations will not have to suffer with this disease. At this writing, I am still Jan and I am grateful the disease is still stable and I am still independent and can take care of myself. I voluntarily gave up driving. I am so very grateful and blessed to have Chuck who takes such good care of me and is my rock when I feel all the emotions or just need a good hug. He is everything to me, and I thank God every day for his patience, kindness, and love.
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