Thank you for all of the "thinking of you" notes and wishes and prayers here and on Messenger. A really good health day is a precious gift. I've been sleeping better so today I woke up to enjoy one! To celebrate I thought I would check in and send you my smile in hopes you will pass it along to someone in your path today who could really use one. If you give yours away, chances are you will most likely get it right back. Have a beautiful day.
PS: My next surgery eval date is June 20th. Will check in as we get closer.
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/
Hope this posting finds you well. I am logging back in in preparation for my third DBS surgery eval coming up this Friday at Mayo Clinic Jacksonville. As exciting as it is, I have angst at the thought of going off all my meds once again. I've had Early Onset Parkinsons since Jan 2009 and have only gone completely off my meds about 5 times total. Last August it was for 24 hours for my social security disability eval. Previous to that was November 2016 for the second DBS eval at UofMiami which resulted in surgery scheduling but my relocation to central Fla cancelled it.
Here we are again - my third surgery eval off meds. This time they only requested I be off for 8 hours but the increase in the severity of my disease between Nov 2016 to Aug 2017 was striking. We are now 7 months later than that and I have a constant low to medium velocity tremor (that only subsides while in deep sleep) I have become accustom to that I didn't have at either time ON my medications. What is in store for me this time?
In August we discovered that I am paralyzed from my neck down through my toes by near rigor mortis-like dystonia, which I didn't know I had before going off meds. I was in shock last August when the doctor could find no detectable reflexes in either leg. I was unable to walk and thanks to cervical and truncal dystonia found it very difficult to breathe with a firm hold on my diaphragm, neck and throat. I wrote my doctor about my angst. My family and I look at each other with concern and say, "only 2 more times" - the eval and surgery day. I go off my meds courageously each time; this time I don't want to do it. It only takes about 6 hours to be fully engulfed by my PD but it takes 3 days for the meds to restore my ability to walk. Its like Cinderella and the pumpkin. I take my meds every day and like magic, I am ambulatory. I walk and do everything I've always done. Off my meds, the polar opposite. I thank Michael J Fox, researchers and doctors for the advances in PD, including this miraculous surgery that was created to halt my tremors, dystonias and dyskinesias. I have friends that have gone through it and all forget they have PD on most days. I cannot wait for my turn. I will be back to post the results after Friday.
Let's pray they schedule my surgery right away. My life is wonderful, happy, and full these days. I want to continue in full bore to enjoy it with the return of peace and stillness. If you do not have Parkinsons, I want you to take a few minutes to take a deep breath, hold it and listen to the silence. Just enjoy and thank God for your ability to be still. for it is a gift you don't realize you have. I will be there with you very soon.
LRRK2 Drug Trial Shares Promising Results,
Company to Begin Second Study
Posted by Maggie McGuire Kuhl,
December 21, 2017
Yesterday Denali Therapeutics announced positive results from its first-in-human LRRK2 inhibitor clinical trial. The experimental treatment is safe, and it lowers LRRK2 protein activity in humans' body cells. This is a meaningful milestone in the clinical development of a drug with potential to slow or stop Parkinson's progression (something no currently available treatment can do).
Denali also shared it is testing a second compound in a separate Phase I trial in control volunteers. Following completion of both trials, one of the two compounds will move into studies in people with Parkinson's carrying a LRRK2 mutation.
Read more below on this project and its treatment potential from our earlier report on Denali's initial public offering.
In a press release, the company announced its first trial showed greater than 90 percent inhibition of LRRK2 activity at peak drug levels. This is a critical early step in testing a drug -- does it do what you want it to do in the cell? Denali used two tests to measure inhibition, including one based on a finding from a Michael J. Fox Foundation-organized consortium linking LRRK2 to another protein.
"Mutations in LRRK2 are a major risk factor for Parkinson's disease. Targeting this degenogene represents a promising approach to develop disease-modifying medicines," said Ryan Watts, PhD, Denali CEO.
Read more on the findings and next steps.
December 8, 2017 -- San Francisco-based Denali Therapeutics has raised nearly $250 million in its initial public offering, marking the largest biotech IPO of the year. In announcing terms of the IPO -- a major milestone in the life cycle of any company as it first offers stock options publicly, garnering capital for growth and expansion -- Denali shared it is testing a LRRK2 inhibitor drug in a small trial of control volunteers.
Mutations in the LRRK2 gene are a cause of Parkinson's disease (accounting for one to two percent of all cases, but behind up to 40 percent in some populations) and are associated with higher activity of the LRRK2 protein. Scientists, therefore, are developing inhibitor drugs to offset that over-activation and protect cells. The Michael J. Fox Foundation has a robust roadmap strategy around LRRK2: funding many studies to understand more about the protein's connection to Parkinson's and how we may target it to slow or stop disease.
While we have not directly funded Denali, our investments have been critical to helping the company achieve its current promising LRRK2 program. Denali has used MJFF-supported research tools in its experiments, and an August 2016 Forbesarticle reported CEO Ryan Watts cited a unique MJFF-led consortium as influential in his decision to license and develop LRRK2 inhibitor compounds. The LRRK2 Safety Initiative tested compounds from Genentech, Merck and Pfizer for safety, finding lung tissue changes were reversible and not associated with functional problems.
"This is a textbook example of what we exist to do: persevere to overcome issues that would otherwise set PD drug development back by years," MJFF CEO Todd Sherer, PhD, told Forbes. "We're thrilled on behalf of everyone living with the disease that a highly-promising target continues to move forward."
Therapies like this -- targeting dysfunction associated with a genetic mutation -- are examples of precision medicine, prescribing treatments based on one's biology rather than clinical diagnosis. Earlier this year another Parkinson's trial began enrolling people with a mutation in the GBA1 gene, also associated with the disease.
A common question is if such therapies will work for people without those specific mutations. While we do not yet know, our Foundation is funding research to draw lines between implicated proteins and pathways, which may lead to wider use of treatments.
As its first human study continues, Denali gained approval to begin a trial of a different LRRK2 inhibitor compound in the Netherlands and also is developing therapies against Alzheimer's disease and amyotrophic lateral sclerosis (ALS). We will share more news on the company's Parkinson's trials as it is available.
Happy New Year and Welcome 2018!! Couldn't resist saying goodbye to 2017 in the LBD I welcomed it. Bye Bye!!
I send warm and joyful wishes to all of my friends and family this Christmas. I'm sorry that I have not been as present this year. 2017 was a long year with my dad's passing and my battle with Parkinsons. I saw major set backs in 2017 but in defiance, I have triumph in my sights for 2018. I live a private life now I don't chronicle on social media. I live it instead. Know that I have found solid ground once again and I am thriving. I am filled with gratitude for the little things. I have tremendous love surrounding me. I triumph over PD some days and I exert more effort to do what came so easy on other days. I walk slower than I used to, but you can't stop me on my bike; that's where I leave PD behind. I look forward to DBS surgery with anticipation. I have so much more to accomplish in this second half of my life. PD will soon move out of my consciousness after surgery thanks to a pulse generator regulating the signals from my brain which will allow me to live in tremor free peace. I smile at the thought of that first day of stillness. Incredible! My health is better than ever and so is my heart and mind. Thank you for all the messages asking for an update. I wish you peace, joy, love, prosperity and very good health in 2018. And don't forget to live life like you mean it by making every day count.
Well lookie here!!!! My new medicine has kicked in. I’m speechless. My feet are not turning inward any longer and my legs feel strong. First time in 3 months I’m headed out to ride. Starting off slowly. Hey, Coach Bleich, let’s roll, brother. ❤️💚💛💜💙
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."