Ran across this tonight. Well known people and some others (like politicians) currently living with Parkinsons:
READ THIS BEFORE VIEWING THE VIDEO PLEASE.
IT IS DIFFICULT TO WATCH
I received word on Friday from the head of the DBS Team, Dr. Luca, that he and the "team" did not feel that I am far enough along in my disease yet to get the DBS surgery. I am currently on 7.5 tablets of dopamine. They want to wait until I have to take 10 per day before they proceed. That could be another year or more. The problem for me is I am sensitive to my meds and going that high brings on side effects worse than the disease -- like terrible insomnia (thats right, its 4am as I am posting this) that is caused by a build up that mimics the drug "speed". Every third or fourth night my brain will not go to sleep and I am awake for typically 36-40 hours straight before I can sleep again. I cant imagine going up on my meds before I can get relief. So yesterday morning I videotaped my disease for the first time ever. If you ask anyone who sees me daily, I typically do not present as a Parkinsons patient because the meds do finally kick in and allow me low levels of continuous tremor so its usually just me that feels it but its not usually abundantly apparent to the onlooker.... unless you see me when I just wake up. I am going to give this link to my doctors and see if they feel the same way afterwards. Warning: this video will be difficult to watch. It is my personal record so I will not allow you to share it or re-post it. Cross your fingers for me that it will sway their decision. Now that you can witness what I dont ordinarily allow anyone to see, you will also understand my writings better. Do not watch it if seeing me tremor will upset you, please. Even my closest friends and family have never seen this. Only my amazing husband has to go through this with me. Please pray for a cure and that the vaccine they are developing works. No one should ever have this happen to them. When given the opportunity, please give generously to the Michael J Fox Foundation for Parkinsons Research. Thanks to MFF, there is hope and a cure in my lifetime.
NOTE: THIS VIDEO IS PASSWORD PROTECTED. TO SEE IT, PLEASE CONTACT ME. THANK YOU.
I was going through some old photos tonight and noticed how relaxed I look in them compared to today. These are from 2005-2007. Aren't they beautiful? Parkinson's will join me only a few years later in January 2009.
In these pictures I didn't know what was waiting for me. I no longer have the ability to relax as I am in constant involuntary motion. You can see the joy on my face. My eyes are bright and my skin is softer. I smile when I look at these. It was a wonderful time for Lee and I that I will always cherish. You can see our dreams coming true.
If you are reading this and you do not have PD, please take a minute, close your eyes, feel the stillness (because it is there waiting for you) and be grateful. You don't know how lucky you are. I would never have imagined that it would be taken away from me and how different my life would be today. Tomorrow I want you to bound out of bed. Smile with your eyes. Dance with abandon. Stand on your tip toes. Extend a steady hand to hold another. Reach for the stars in everything you do and be grateful for the peace still inside of you. Do it then smile and think of me. If only one person did this I can say there is meaning in my journey. I hope you do and it brightens your day. (Go ahead..... stand on your tip toes. No one is looking.)
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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."