I am waiting to give an update until I am fully on the drug so not to jinx it, but I wanted to share with you the most beautiful support note I received from a personal angel, who without I would not be where I am today, in so many ways.
This angel was at the right place at the exact right moment minding his own business in a grocery store when my mother overheard a conversation he was having with someone about Parkinsons. My brave mom waited for them to finish and then approached him to find out how he knew so much about PD. At that time he worked with the South Palm Beach Chapter of the National Parkinsons Foundation. She could hardly believe it. I still lived in WI at the time and was only just suspecting PD a week ago, then BAM; he appears in Publix. My life hasn't been the same ever since.
Last night, he wrote me (and is so graciously allowing me to share with you):
"Love you and your courage. You too, Lee. We know what one day at a time means. Stay calm and all will work out. Think about all the people who are waiting for the results and their hope for a better life. You are helping over 4 million people, let the meds do what they were meant to do. 15 minutes off all meds? What a great first day. Remember that and you are a rock star as you like to say. History kid, history. Now you know why I love you so much. You define hero."
"Lisa it's much easier to see when you're not in the box. I don't have PD, but I went through it with my dad. I'm in the brain Bank study, and every trial that I can possibly be without Parkinson's. It's always helping all the people that come after us, and my way of thanking my dad for all he's done. What you're doing is helping every other person on this planet that has PD. You said that is only a hundred people in the study, you truly are blazing a path for every other person. You said that you know the meds work in about 15 minutes, that's amazing. Think about how amazing that is, and keep your eyes on the prize. When you're back on your meds and you're having an off think of how much hopefully the meds can help. Always realize that today was day 1. Now we all know what stress does to PD. So even with all the stress, the lack of sleep, and the fear that comes with not knowing, it worked. Absolutely amazing. Keep your eyes on the prize and it should get easier day by day. Anytime you want call me I will always be there for you. I don't know why God placed me in front of your mom but it was for a reason. Keep up the fight kid. I love you."
I LOVE YOU TOO, Stuart Perlin
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"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."