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| My Mission | ||
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| Published: Jun.30.2005 @ 7:40 am | ||
As a person living with Parkinson's Disease, I am dedicated to shining a light on the most
promising research areas, to champion the allocation of money and
talent to find a cure within my lifetime, to make treatment of people
with chronic illness more affordable to the average person, and to give
a voice to those who suffer daily with the disease, the courage to hang
on until a cure is found. The
reason I am writing this blog is stated in the opening paragraph.
I am a patient who has had this disease for 22 years and
counting! Whether you are a patient or a caregiver, a doctor,
researcher, professor, or a caring friend, I hope to write about topics
of interest to all and which are timely to this disease. I hope
to cover my views along with the prevailing thoughts regarding the
following: cost of prescription drugs, health insurance,
long-term care, Medicare vs. Medicaid, applying for disability, sexual
desire, progression issues, what to expect with PD, Deep Brain
Stimulation surgery, stem cell research, alternative medicine, supplements, other health issues that
impact PD such as cancer or heart disease, and in general, day to day living with Parkinson’s, and how
a positive attitude, physical exercise, love and support can go a long
way in improving your quality of life. If you have Parkinson's, you might as well get used to it. You've been handed a lifetime sentence and the walls of your prison are bare to begin with. It's up to you to decorate them any way you wish. You can let depression settle in and take over your world, leaving your walls drab and colorless. With depression, you may have to color them every single morning, deliberately, relentlessly, if you are to survive with any happiness at all. I am one of the lucky ones whose walls stay whatever color I want them and the pictures I add to them keep growing in number. My walls are cluttered with loved ones and friends, people I admire but have never met (my American Idol, Clay Aiken), and of animals and pets, pieces of art and paintings, ancestors, places I've been or have yet to travel to. My walls are abundant in scenes of living and life here on this planet. I have much hope for finding a future cure, in my lifetime; of living without this progressing, debilitating disease, which has robbed me of so much. I have learned how to plug the holes it leaves with alternative pieces of beauty. I used to sing beautifully I am told, so now I sing along in my head with the likes of Cecilia Bartoli and Eva Cassidy. I will never be that budding concert pianist I was in high school, but I keep my piano to play when no one is listening. I may not be able to have a career in the public eye, but I can keep up my appearance. I get my hair and nails done every month. It's the one indulgence I still allow myself. I can't run a marathon but I can walk a mile or two; recently 10 miles, although I couldn't do that every day! Every hole left in my life by this disease is "plugged" with a thing of beauty. I recently reached out to discover what had happened to some favorite past friends I had lost track of. The results have been mind-boggling and beauteous. More than anything, I want this Blog to prove that life can go on within the walls of Parkinson’s, if only you make that choice. I choose to fight this relentless monster that strives to manage my life. Someday, when I am old and have used up every corpuscle in my body to the betterment of tomorrow, then like the Pope, I will give up this mortal life and return to live with God and all the beautiful souls on the other side, Home. Until that time, when I am called Home, I will live each day with love and with beauty and most of all, with Hope. |
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