This picture just popped up on the side bar of my FB page. I immediately thought of all of all my friends and family, my angels, surrounding me. Billions of pictures and this one appears. I am in awe of God's timing.
In gratitude.... I pray
Can't lie. I am nervous the night before the start of my drug trial.
I sit in awe and gratitude. I can't register what has happened today. It seems like the whole day is just a dream. I wasn't planning for this. It just happened. Today tremors. Tomorrow on my way to the stillness I seek. I will never forget today as long as I live.
Today I enrolled as 1 of only 100 people in the US for the Final CTH-301 PHASE 3 SAFETY STUDY. The Efficacy Study is closed. That is the double blind placebo study. They are now on to the Open Label version. I will be getting the drug; no placebo. And I start the testing tomorrow and the drug next week. For those that want to check out the study I am joining, click here: http://www.cynapsus.ca/product-p…/apl-130277-clinical-trials
The drug APOKYN has been used for PD for this purpose since 2004 but its only been available in injection delivery. This drug is sublingual (under the tongue). I will take it with each of the 5 doses of dopamine I take a day. It will reduce the "OFF" period from 2 hours in the morning and 45 minutes for all other doses down to several to 15 minutes. Wow!
I think I will go buy myself a lottery ticket tonight. Hey, wait - I have won the lottery!!! Who would have thought 5 years ago when I started to tremor that only 5 years later there would be a way to stop it.
My dream in all of my writings is to return to the peace and stillness I once took for granted.
I might just get that wish. And sooner than I was expecting.
Dream boldly, friends. Never, ever, ever, ever, ever, ever give up. Ever.
I am going to make a dart board of this picture. My enemy - a picture of Alpha-Synuclein protein. Clumps of the a-synuclein accumulate in the brains of all people with Parkinson’s disease (PD). Finding ways to break up, clear, or eliminate the toxicity of these clumps could go a long way toward finding a disease-modifying treatment for PD.
Michael Vullo, aways said I had spaghetti for brains. Looking at this picture, he may be right. My mad scientist baby brother.
Hi everyone. I am so excited to report that I have volunteered for CTH-300: A Phase 3 Study to Examine the Efficacy, Safety and Tolerability of APL-130277 for the Acute Treatment of OFF Episodes in Patients With Parkinson's Disease. 3rd phase is the final phase before being approved to go to market and this one is tailor made for me. (I am joining the final Safety study)
They were searching for PDers that take a min of 4 doses of dopamine a day (I take 5) and that experience at least 2 hours of OFF time each morning. That's me!!!! I chatted with the study doctor's office in Boca yesterday and will be tested on July 26th. The drug is a sublingual (under the tongue) strip that I use with my regular medicine regiment. It cuts the wait time from OFF to ON from 2 hours (or 45 mins for each of the other 4 doses I take) down to 15 mins!!!! So I should hopefully cut the time I am annoyed each day to only 1 hour 15 mins total. That's down from about 8 hours a year ago....and another positive step toward my dream come true.
I am happily biding my time waiting for the drugs that slow or stop the progression to hit the market. They are only around the corner!!!! Yay. Thank God for Michael J Fox.
PS: the drug company is so positive they went public with an IPO on June 30th ❤️❤️❤️
My ancestry/heredity DNA charts from 23andme from when they took my DNA for PD marker testing. Its really interesting to see that they took my DNA in Sept 2014 and reported that I was 98.6% European/Italian. I thought I was 100% Italian. I was close.
I was just reading that as they collect more and more DNA they adjust the reports based upon matching family members. I am down to 92.8% now. And I see that I am matched with my cousin, Christine Vullo Reynolds. There is an anonymous second cousin with the same last name list for their extended relatives that I put a contact out for. They definitely belong to me. I need to get my mom and dad tested and added to the database this year.
I am more intrigued by all of the countries I am NOT, than I am. Its weird to see that you are definitely ZERO PERCENT this and that. As you can see, my ancestry were not big travelers!!!! I'm from a small circle in the world.
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."