One of the most difficult things one can do with a brain under constant chaos is to simply relax. For over a decade I have felt as though I needed to do everything on my to-do list as quickly as possible. Imagine floating outside of your body; being able to see yourself doing chores at breakneck speed and wondering to yourself, "why???." Why can't I just stop, slow down and start again? I still to this day marvel how too much dopamine can do that to you. It acts the same way as cocaine or methamphetamines (like speed), however, dopamine doesn't affect your senses or get you high. It revs you up to run a marathon in record time when you think you are not capable of running the 100-yard dash!!! Try living under that influence day after day, year after year. If you are in the same predicament, you know It's exhausting.
So over the years of taking dopamine I never needed, this is how it happened.I went from 1.5 tablets of Sinimet (Carbidopa/Levodopa 25/100) in 2012 to a peak in summer of 2018 of 18 (EIGHTEEN) pills every day. That my brain is healthy is a miracle. It has been subjected to over 18,000 pills of excess dopamine and survived. Add to that over 3,000 8mg Neupro patches; a dopamine agonist, which has no dopamine in it but tricks your brain into thinking it has more. The maximum recommended by the manufacturer is one 8 mg patch. I've worn TWO since December 2017 prescribed by Mayo Clinic.
Been quietly tapering off of my Parkinson's meds. Started at 14 tabs of Sinemet a day and two 8 mg Neupro patches. Down to 8 tabs a day and only 1 patch. Just short of halfway there. I’m hanging in there. Tough some days but today is a good day. I’m definitely thinking clearer. Brought my racing bike inside the house and put it in a stationary training stand. I’m putting miles on it. I should be off my meds by Christmas. Keep praying. It’s been 8 years since I started these drugs. Happy to say goodbye!
Happy holidays everyone!
We saw some excitement with last year's "new diagnosis" of Functional Neurological Disorder by Dr. Deeb at University of Florida Gainesville / Shands Hospital. It seemed to work. I was titrating off of my high doses of medication and the same time I was working full time, plus taking care of my husband and children. There seemed to be a honeymoon period in there when I was coming off the meds that I seemed to be improving. But that was short-lived over about a 4 week period. Then all my symptoms returned with a vengeance.
My tremor as you can see from the video I made for my last posting announcing my ten year anniversary that I am living incapacitated. I believe my health has been made worse by playing around with my dopamine. Don't take it; do take it" - when? It seems logical that once the stores of 17,000 dopamine pills finally cleared my system, my Parkinson's symptoms went off the charts and has never returned to manageable. Add to that whole-body Dystonia that makes every inch of my body ridged. To the point that the combination of the two - rigidity with high velocity tremor - is causing nerve damage in my wrists, hands, fingers, groin, neck, back, and especially my legs and feet. I have no balance any longer. I fall and can no longer catch my fall so land with my full weight on my hands or my face (as I did in the Midway airport this winter when my sneakers were sticky against the newly polished marble floor. I started to fall forward on my tip toes and ultimately could not right myself so down I went - hard. I quickly picked myself up in pain and headed for my gate with other passengers looking like they just saw a train wreck. That's a good definition of my physical being today - its a train wreck that doctors make no effort to alleviate. I'm not quite sure how worse this needs to get?
Great news to report!! Since being told I actually do not have Parkinson's Disease but that it is rather Functional Neurological Disorder I have been titrating my dopamine down from 18 tablets per day (3 tabs x 6 times per day) to 1 tax x 3 times per day to then get off the Neupro and Amantadine, if possible. I AM DOWN TO 4.5 TABS PER DAY (1.5 tabs x 3 times per day) AND FEELING AMAZING. I am back on my bike and have dropped a good deal of the nastiest symptoms of being on that extreme dosing level, Got me thinking tonight.....Just how many tablets of Sinemet have I taken unnecessarily?
I found my first neurologist's records online purely by accident. They share the same patient record online vendor that my new CBT therapist does. What a surprise to learn the exact dates of the progression since he was the first neurologist I was finally referred to after my first symptom appeared in January 2009. My first visit date was December 8, 2011. Almost 3 years after my first symptom.
My first prescription for Sinimet was given to me on May 8, 2012 for 1/2 tablet x 3 times a day before meals, then titrate up to 1 tablet per day x 3 days after 7 days.
In my almost 10 year journey since my first symptom sent me to the PCP in January 2009, my rollercoaster odyssey for the next five years to find a diagnosis, and then finally being told I have Early Onset Parkinsons Disease in November 2013, I never heard or came across the term "FUNCTIONAL NEUROLOGICAL DISORDER".
Luckily for me, the introduction came just in time. I learned about FND at the University of Florida Shands Hospital Movement Disorder and Neurorestorative Dept during an evaluation for Deep Brain Stimulation Surgery to implant a device that as a PD patient would help to stop my tremors and whole body Dystonia. I went in expecting a date for surgery; and left there with a change in my life trajectory. WOW!!! Keep reading......
All it took my new neurologist to determine I most likely don't have PD (or if I do its a mild Stage 1) was to read the results of the one hour of PT and one hour of OT plus he scheduled me for BEFORE my eval (in conjunction with his own manual test results). I had not had either therapy since 2014 and that was the LSVT BIG program I took for balance. These two appointments prior to the doctor seeing me were KEY!!! I had three other surgical evals prior to this one at two other major hospitals and neither began with PT or OT. Brilliant move!!!!
I arrive at Shands off my medications for almost 24 hours. I was in full body Dystonia. Stiff as a board and unable to walk. I went to my PT appointment in a wheelchair. After my PT stretched all of my limb muscles and started me on warm up exercises, she proceeded to give me tests (which I remember from the BIG evaluation). I was having so much fun, my body returned to supple and flexible. At the end of the hour, I threw my heavy overnight bag over my shoulder and promptly walked into the waiting room at a normal walking pace. My muscles were now awake.
My next appointment was OT. A brilliant OT measured my fine motor skills and promptly determined there was something else going on here. She asked me if I ever experienced trauma. So I proceeded to list the ones I could remember - after 30 minutes she had to stop me and asked, "You ARE seeing someone to talk about all of this, aren't you?" Of course, I said, "No, why?" I didn't notice until hindsight that while I was discussing them, my body became completely relaxed and all tremor was gone for good..... for the remainder of that day. I didn't have any idea in that moment that my diagnosis was about to change.
My next and final stop was my to meet my new neurologist who put me through the test paces (I am oh so used to) and then I sat down to schedule a date for my surgery and instead was told that my brain might have trouble initially understanding this, but he suspects I do not have PD at all. He thinks I have FUNCTIONAL NEUROLOGICAL DISORDER. In panic, I said, "What is that????" (Praying it wasn't worse than what I have now. Wait, I have something else? How could this be?) My ears heard him and my brain sent out an SOS. Stop the presses. WHAT??? After an explanation from my doctor (quickly) that FND is treatable and most likely for me curable, I burst out in a guttural cry. The relief was palpable. We proceeded to finish speaking with me wailing because I couldn't stop my reaction. He went on to explain FND, which I researched when I got home. His treatment schedule for me.......Titrate OFF of my meds on a slow schedule. Get my Carbidopa/Levodopa down from 18 per day to 3 then off the other meds, if I can. Three PT and three OT appointments per week and talk therapy twice a week. It can take between 4-12 months depending on the patient. WOW!! Are you kidding me?
Fast forward 11 days to today. I have titrated down to 9 dopamine tabs per day (cut in half) and I have not felt this well in a really long time. I woke up this morning with no sign of tremor even though my last dose was 7 hours ago. I SLEEP!!! Last night I went to bed at 10:30pm and did not wake up until 5:30 am when my dog signaled he needed to be let out. I also took two naps yesterday and one already today. These are the welcome first steps to resolving my dopamine induced SLEEP DEPRIVATION. My mind is surprisingly and obviously to everyone around me - very clear. I am back to making intelligent decisions in a timely manner. I am much less "reactive" to what I am being told. I automatically returned to listening to what someone says and then responding. I am not an emotional mess. In fact, I have my fighting spirit back. I can see the masking leaving my face. I can easily go 6 hours between doses; prior to this I couldn't even make it to 4 (I was "on" for only maybe 2 hours at time with high velocity tremor in between that was really affecting my life every day). I am making myself good meals to eat; not grabbing something quickly or not eating at all because I couldn't make a decision. I feel more each day like the "normal" person I used to be. My brain is back!!!!!
My body is ready to come back, as well. I started doing push ups (didn't have strength to hold one 10 days ago) and sit ups and stretches. Getting prepared for much needed PT and OT. I always had a firm, slim body. All the weakness and lack of motivation to exercise has made me loose and jiggly. Luckily that's not going to be too hard to fix. I just need to put forth the effort. Once my muscles are tight once again, it should help stop the tremor (which should also subside as soon as I work out the PTSD from a life filled with trauma). I am aware that I carry lasting memories that I recall almost every day. Some much stronger than others but I would easily tell you I suffer from PTSD - there is no doubt. FND has to do with a disconnect in your nervous system. If you know me, this would have been a "no-brainer" to diagnose if you were aware of FND.
Here are some very vital resources I am learning from and you can too. I will be back with updates and more information. We need to spread the word: FND AND PD MIRROR EACH OTHER SO CLOSELY THAT THEY CAN EASILY BE DIAGNOSED IN PLACE OF EACH OTHER. There are specific things that belong to each, but you have to look closely. PD lives in the motor region in your brain; FND lives in the autonomic region (reactionary). If you don't have PD, like they suspect I do not, then - like me - you can come "in" and "out" of PD symptoms almost at will. I do not have consistent PD. It can be almost undetectable and catatonic - in a large swing from nothing to severe. I find I can do that based upon my emotions. If I am calm and stress free OR if my thoughts are re-directed (like when I am in public), the PD symptoms are the least noticeable. My tremors are high when I am the most stressed or tired or receive information that I don't want to hear or am in a situation I don't want to be. Any time my brain goes on FIGHT OR FLIGHT, my PD-like symptoms are at their worst. My new doctor promptly annouced. "If you really had PD, it would NOT be possible to do that." What a smart cookie!!! I encourage you to do some research and ask your doctor if this could be a possibility for you.
RESOURCES I HAVE FOUND: (Note: I am not a medical professional so cannot make comment on or warranty or recommend anything written on any of these sites. I just found them myself.)
Let me know if you come across good resources to share. This is exciting news for me and I hope for someone you love. In some cases, there is an alternative to PD. My intuition tells me this doctor nailed it on the head (no pun intended) and lucky found me out before surgery. I am forever grateful.
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.
In my lifetime! Told you!!!
CLICK HERE: https://parkinsonsnewstoday.com/2017/06/15/affitope-pdo3a-vaccine-triggers-immune-response-against-protein-linked-to-parkinsons/
AFFiRiS’s new Parkinson’s vaccine, AFFITOPE PD03A, triggered a solid immune response against the alpha-Synuclein (aSyn) protein associated with the disease, according to a Phase 1 clinical trial.1
Patients also tolerated the therapy well, researchers said.
Werner Poewe, a professor at Austria’s Medical University Insbruck, presented the results at the 21stInternational Congress of Parkinson’s Disease and Movement Disorders in Vancouver, Canada, June 4-8.
He is part of a European collaboration known as SYMPATH whose aim is to develop vaccines targeting the aSyn protein. The collaboration involves AFFiRiS and seven academic and industry partners in Germany, France and Austria. The European Union is financing SYMPATH.
The 52-week Phase 1 trial (NCT02267434) evaluated the immune response, safety and tolerability of AFFITOPE PD03A in patients with early Parkinson’s disease.
Researchers randomized 36 patients to receive one of two doses of the vaccine or a placebo. One dose was five times larger than the other. The basic immunization was an injection a month for four months. At 36 weeks, patients received a booster immunization.
The vaccine triggered immune responses against the aSyn protein over time. The reactions were dose-dependent, meaning that the higher dose triggered a stronger response than the lower one. The booster immunization reactivated the vaccine’s antibody production, researchers said.
Both doses of the vaccine were well tolerated, with patients reporting no serious adverse events.
AFFITOPE PD03A is a synthetically produced aSyn-mimicking peptide — or protein component — that targets the aSyn protein.
ASyn plays a key role in the onset and progression of Parkinson’s. Current treatments can only alleviate the disease’s symptoms. Scientists say aSyn has the potential to actually slow the disease’s progression.
SYMPATH researchers hope to develop an aSyn-targeting vaccine for multiple system atrophy as well as Parkinson’s. The consortium has already created a vaccine besides AFFITOPE PD03A, known as AFFITOPE PD01A. A key reason the EU became involved in the project is that current therapies for many neurodegenerative conditions are unable to alter the diseases’ course.
“The immunogenicity profile [of AFFITOPE PD03A] looks encouraging and supports the hypothesis that patients elicit an antibody response specific to alpha synuclein, a protein that is believed to be contributing to the pathogenesis of Parkinson’s,” Poewe, the principal investigator of the study, said in a press release.
Wear Your Heart On Your Sleeve
"Lisa Chalker 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."