My favorite quote right now is from Anais Nin, “Life shrinks or expands in proportion to one’s courage”. So courageously saying yes to traveling from Washington State to Washington DC, zooming through airports in a scooter, with a catheter and a very little amount of energy, my husband Chuck and I traveled to Bethesda, Maryland to the National Institutes of Health where I participated in a week long study for early identification of Atypical Parkinson’s, Multiple Systems Atrophy.
I thought long and hard about traveling across country to participate in tests that really would not help me get better, but I am at heart a teacher, and as such I felt I wanted to help others be able to find the answers to their questions earlier than the years it usually takes to pin down some of these tricky atypical Parkinson’s diseases. I felt I could really do something to make a difference.
The entire experience was amazing. Every nurse was caring and friendly. Everyone I met, including Kay, a Chaplaincy Intern who prayed with me twice, seemed to be there because they had found their calling. And on top of the wonderful care, the food was great. You order like a restaurant whenever you want and they will bring up anything you want.
I am especially grateful for the amazing care I received from Dr. Goldstein, Dr. Cook and Nurse Practitioner Extraordinaire Jennifer Pope. If you have been diagnosed with some horrible neurological disease, these are the research team you want.
I lost count of the amount of times I was stuck with a needle. The first night I was there I ran through four highly trained nurses, who all were sure they could draw some blood, not even an I.V., just to get a blood sample. Finally the Pro from Dover (If you are not familiar with that phrase, please order up the movie Mash) arrived and bam, I had an IV, blood was flowing and all was well…for about 6 hours, which seems to be my I.V. max.
I had blood tests, a CT scan, and then 3 hours with my arms up over my head having a PET scan. When asked about my super human endurance to stay put for so long, besides the fact that I have an indwelling catheter, my answer was meditation. I spent that time at my beach cabin watching shore birds. I ask them not to have me to respond verbally when they were checking in, but I would raise my finger only. When I am deep and down I want to stay there.
Next day it was only 2 hours in the PET scan. Then I had a lumbar puncture. The hardest and most painful part of the week was when I had to stay flat on my back for 6 hours of excruciating back and hip pain. I am making an appointment with my orthopedic doctor this week. I should not have bragged about my amazing meditation abilities.
I also had a sleep study; I think the technician used Elmer’s glue in my hair. I could not wash it out the next day because I had 5 biopsies on my leg, I could not shower for 24 hours. More blood draws, an echocardiogram and then a vanilla shake. Really, I could order anything…sweet! It made my life with glued hair bearable.
They also did a DNA study, I will know way too much about my probable course, and any inheritable disease I could pass on to my family. Chuck has a lot of cancer in his family. When asked about if he thought he would inherit that family curse he said, “I inherited that thinking style, not the disease, how I think is up to me.” So in the middle of what appears to be so real I remember the great Shakespeare quote; “There is nothing either good or bad but thinking makes it so.”
Although the week ended with a meeting with Dr. Goldstein and his staff, we really will not have the full information for about a month; then it comes privately to me. Outcomes, specifics, dastardly facts; all mine to decide with who and if I share this thinking style.
I am still tired from the plane ride, but so glad to be home. I woke up the first morning back with my 4 year old granddaughter Nora’s face right up next to mine, “Can you draw me a doggie fairy Zuma?” I am home.
Welcome to my blog. Here I will write about all things Cathy.