This is a year or so old but still worth watching for Young Onset PD as well as fans of Michael J Fox.
I still want to do a round table special sitting with Alan Alda and a few otheres to talk about PD and how to adapt to suddenly having this creature with me everywhere I go, affect everything I do. Infesting my life and tearing apart friendships, relationships.
I am raising money for the Parkinson's Unity Walk via Facebook fundraising. I've chosen this nonprofit because their mission spreads awareness of Parkinson's Disease and distributes to the research organizations listed below. I hope you'll consider contributing. Every little bit will help me reach my goal. I've included information about Parkinson's Unity Walk below.
www.facebook.com/donate/468755728571510/
The Parkinson’s Unity Walk is the largest single-day grassroots fundraiser for Parkinson’s disease research in the United States. Our mission has always been to raise money for Parkinson’s disease research. Thanks to our supporters and sponsors, more than $26.5 million in donations have been raised since the first Unity Walk in 1994 -- 100% of which has funded hundreds of research studies, taking us steps closer to finding a cure for Parkinson’s disease.
All donations are distributed to the following four organizations for the sole purpose of funding research grants: American Parkinson Disease Association, Parkinson’s Foundation, The Michael J. Fox Foundation for Parkinson's Research, and The Parkinson Alliance.
Our Walk is held every April in New York City’s Central Park. In addition to the 1.4-mile wheelchair-accessible walk route, we are a comprehensive event for Parkinson’s disease information and resources.
When John Alexander was diagnosed with a degenerative disease, he decided to take control of his health and mindset by finding ways to motivate himself and others with Parkinson's.
John became a distance cyclist and triathlete after discovering that staying active is one of the best ways to combat the effects of the disease. John maintains his upbeat attitude by seeking inspiration from the Parkinson's community.
He stays involved in helping transform other peoples' lives as a dedicated ambassador for numerous organizations and a sought-after inspirational speaker.
Available from Amazon.
Parkinson's Awareness Month is observed in April. Parkinson's Awareness Month is an opportunity to increase awareness about the ailment and its symptoms, as well as to support victims.
A few meds changed or added seem to be helping me.
Never follow my medical scribblings, consult your doctor before changing or stopping any medications.
Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills at 9am, I ramp up with 1/2 a pill at 8:45am and half at 9:15. My analogy of taking 1 1/2 pills at once is a tsunami pulls the tide out (stiffness and freezing) then the wave hits me (a brief on time) before receding back into the sea (wearing off). Splitting the dose is more subtle of a wake up for my brain-like the tides.
Yes my meds are still wearing off and I still get dose failures but somehow they seem a little less intense.
Last night I met up with one of my friends from Miami for dinner, then to go hear music! Dose failure and I'm sure it was totally due to taking C/L during my protein filled meal (hard to time this right). So nobody got to see my signature bad dancing at the show–but my next dosage worked and after the show, besides feeling exhausted, I felt good! Keeping my fingers X'ed.
DBS is on my mind. I am slowly inching towards the deep brain stimulation. Everyone I speak with has encouraging words. I MAY BE SCARED. I MAY HAVE ANXIETY. It's freakin' brain surgery. Who wouldn't have anxiety or be afraid? I have anxiety getting my teeth cleaned in the dentist office.
This is MY CHANCE TO LIVE AGAIN. I want to explore places and experience things I have been thinking about since Parkinson's put my life on hold. I know DBS is not a cure and does not slow down progression. I'm still hoping for a cure, and reversal of damage, a repair of dopamine receptors and transmitters and I don't want to sit in a pool of my own urine waiting for my demise. This sure seems like a lifeline and I'm ready to live, again.
It's funny the things that go on in the brain, recently I met up with a red tail hawk and had a sudden boost in courage. Is the hawk my spirit animal? Maybe. Did I have the courage all along and was my brain filled with so much noise I couldn't see the path, not to mention the goal. Maybe.
For now I'll give the hawk credit for showing me the path and giving me courage to follow the path to my chance to live again. I also want to thank those of you who i met in support groups for sharing your own experiences.
More of my thoughts and apprehension on DBS as I meet with doctors and counselors.
