Feedspot once again recognizes us in their "Top 50 Parkinson Blogs and Websites To Follow in 2018"..... Thank you!
For the second year in a row we are honored to be recognized by the RSS Feeder site, Feedspot, as one of the 50 TOP PARKINSON'S DISEASE WEBSITES featured on the web today, Wow!
Thank you to Feedspot's founder, Anuj Agarwal, and his crew for continuing to support and encourage me to write my experiences from the heart and go out and be an agent of change for those of us that have this chronic illness now, for the future of PD, and for those that have not yet been diagnosed. To those who don't know they have it yet and those newly diagnosed, you are the most special to me. Through my blog I want to help you ease into the changes that are going to be happening to your body, mind, spirit, relationships, finances, experiences, and especially what to expect from your doctor(s), insurance, government assistance, pharmaceuticals and medical devices that will all be new and overwhelming to you and lift your hopes with news of what is on the horizon because its not as bad as you think it might be. From me, and all of my fellow bloggers, you will gain knowledge, our experience before things happen to you, and support and love to get you through. YOU ARE NOT ALONE!
You can find the Top 50 Websites and Blog: Feedspot http://blog.feedspot.com/parkinson_blogs/
Note: Their RSS Feed is subscribed by all of the major news organizations (TV, radio, print). If you don't know what an RSS Feed is - you can subscribe to many different publications and Feedspot will send you an email each morning with headlines so you can read what you are interested in vs. having to read every single website individually. Feedspot.com is offering my blog as one of the 50 choices for Parkinson's information available. Please check it out. Go to FEEDSPOT.COM, open an account for yourself and subscribe to my blog along with other amazing outlets, including the Michael J. Fox Foundation, the National Parkinsons Foundation, Parkinsons News Today and the Brian Grant Foundation! I am in their amazing company.
Thank you for the recognition and the honor to support my fellow Parkies around the world. I am only ONE FACE OF MILLIONS OF PEOPLE WITH PARKINSON'S DISEASE. Follow me to find hope, inspiration, stories that are raw and true, mixed in with silliness and dreams for my future. I was given this disease for a reason. I know that to be true. I journey with it so that you can see it is not the END of your life; its only the beginning..............
Dear Ms Vullo,
Dr Uitti and Dr Wharen have reviewed your records and the video from your visit on 3/23/18. Unfortunately, you do not fit our criteria for moving forward with deep brain stimulation surgery.
Dr Wharen has suggested that there are some facilities that offer studies with young onset Parkison's disease patients and utilizing DBS for symptom control. You can look for all research projects throughout the country by going to the website: clinicaltrials.gov.
Please let us know how you are doing with the 2.5 tabs per dose.
All the best.
All the best.
I read this email denial in silence.
I had no reaction.
I have had Parkinson's Disease for 3,365 days that I know of.
I've been alive for 19,582 days.
That's only 17% of my lifetime.
I am finding gratitude in writing that.
My next step....
FIGHT FOR MY LIFE
DON'T GIVE IN
DON'T GIVE UP
PARKIINSONS WILL NOT WIN
There is a reason everything in life happens, in the order it happens. Their "NO" may have saved me from dying the day that surgery may have been planned. Their "NO" may lead me to the right timing of "YES". Their "NO" may have made me work harder to take care of myself and naturally improve my quality of life in the interim. Their "YES" may have stood in the way of something positive I would have missed out on. Maybe its not time to put holes in my head. Maybe a medicine that will stop my progression will be released and that is what I meant to take. My thoughts are not pointing to sadness. They keep pointing to: Something keeps stopping me from having brain surgery. What? It wasn't supposed to happen today. Why?
Footnote: Someone just sent me this link:
From the Journal of Neurology - a Table with Reasons For DBS Surgery Denial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065636/table/Tab3/
Do you need support?
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"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."