Friday, July 15, 2011

Dementia - You got it. Now what?

Well it's been one year since I have been diagnosed with frontotemporal dementia and each day is truly a new and wonderful adventure.  I wake up each day and the first thing I think of is all the wonderful people that life has surrounded me with. My children in Seattle, my lifelong friends, the people in my support group for early stage dementia, my doctors, and the cast and crew I hang out with every morning at Starbucks.

In the last year I have truly seen the best and the worst that the human race  has to offer. Since I am determined to make this a constructive, informative, and positive blog I will focus mostly on the positive. On the other hand, it will be a reality based blog so we will have to submerge into some of the dark pits of life as to understand why I am so happy now. In the last 12 months life my life has gone from a living hell to once again a life filled with purpose and happiness. Life is truly the ultimate adventure.
Guess your starting to understand why my nickname is, "Waffles".

Is frontotemporal dementia best served with a little bit of ginger and a lot of wasabi? That was my initial comment to the staff of  NY Hospital Cornell Hospital after they told me my diagnosis. In a serious meeting with the neuropsychological team, psychiatrists, social workers, and my friend I was told my PET scan and neuropsych testing revealed frontotemporal lobe degeneration. This is 6 years after being misdiagnosed as being bipolar. I was in NY Cornell Hospital for 6 weeks where they titrated me off the approximate 20 pills a day I was taking daily that had kept me in a medically induced fog. What a relief, I wasn't bipolar and I was no longer stoned out of my mind. For the 1st time in 6 years I was off just about all drugs except the medical staff started me on a new drug called aricept. I was out of the fog and back with the exception of one little hiccup, frontotemporal dementia.

Of course I just lost the woman that I had experienced pure love with, my children were in Seattle, I was flat broke and could never work again, needed immediate neurological help, take care of my will and would need home health care in the near future. Why sweat the small stuff. At least I have my health. OOPS! Another dementia moment.

Under construction:
1. Routine, Routine, Routine: A day in the life with dementia.
1. Frontotemporal dementia: What is really known about it? Why so much misinformation?
 2. Friends and Angels: Lifesaving friends and caring, life changing doctors.

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