New Year 2023.
A new year calls me to a new approach to this newsletter. The newsletter is called Making Note of the Moments, and that is what I plan to do. There is a lot going on in my life worth noting.
In this last year, I am proud of finishing a book that I started years ago. It is off to the publishers at last. I am happy I chose to go to Mayo Clinic in search of answers. I am grateful for the support of my husband Pat, and my daughter Rose. She really stepped up and took on a difficult role as guardian to her sister Kate. Pat is my rock of support.
Sorry! I just realized you don’t know what I am talking about. It is on my mind so strongly, I forget. I may have primary progressive aphasia (PPA), but I still need diagnosis to be complete. It is a difficult thing to determine, this diagnosis, and requires specialized tests for which I may need to wait months.
This year I am yearning for my time to write. I have so many ideas! I am assembling the puzzle that is my life. But I still don’t know what my diagnosis will be, so I don’t even know if there is time. Onward!
In order to do this thing called writing I will need to make room, and not waste time. I will need to read, talk to friends and counselors, and share what I am going through. I will need to be honest with myself and others. And I will need to pray because what’s ahead may be very dark.
My wildest dreams? Grandchildren I am still alive to see. The chance to see Rome, and Israel. A wonderful vacation in Hawaii, with everybody there. Staying vibrant and able to write. And a closer relationship with Pat. Making contact with dear friends from the past, and making new ones in the future. And getting out and walking! Seems like a small dream, but last year I discovered I have heart failure. I have been short of breath for years, and so have been increasingly inactive. Now that I know why, I am determined to challenge myself to get stronger! My dog Logi will love me for it too.
I’d like to chronicle the next years as a service to others that may someday face this same challenge. (I almost said ordeal but that seemed too negative, too prescriptive. I don’t know what my experience will be.) There are so many others touched by dementia, but what information on dementia is available is almost all from the perspective of caregivers or scientists. I am a scientist, but as a friend recently said, I have the soul of a poet. So I can document changes I am aware of from the perspective of the one with dementia, I hope in a way that touches people.
Here goes nothing.
Let me know what you think.
My heart goes out to you, Ann -- and I so admire the hands on approach you are taking with regard to your medical / personal journey. Primary Progressive Aphasia is one of the diagnoses that has been considered with regard to my husband Peter's condition. He too has the soul of a poet and writes continually even though since his stroke he can't read his own writing very well. I look forward to keeping you company from afar as you chronicle about your coming journey.
❤️