I was diagnosed with PD about 1 and a half years ago, with my only symptom being a weakness in my dominant hand. I have not taken any PD medications but have been taking nicotine gum for over 8 months and exercising. I have noticed little to no progression but there may be a little increased stiffness on that same side. The neurologist I recently saw suggested I start on medication and I may do that. But I also am considering a clinical trial of B11B122 by Biogen. Does anyone have experience with or know anything about this trial? They may exclude medication from this trial so ai may need to choose one or the other.
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lovelabretrievers
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I recommend talking this out with your neurologist, not asking random people on the internet. Everyone thinks they are a doctor these days
There are some intelligent people on these boards. I've also read some of the very worst advice on these boards. Again, run anything new you might get talked into trying by your neurologist.
This is not an attack, just my humble opinion. We have intelligent and capable members here in the forum, sometimes with firsthand experience. Yes, a neurologist does have specialized knowledge in one area, but people should think out of the box. Drugs like levodopa are being prescribed for over 50 years without any change. Those drugs can't heal, reverse, or even slow the progression. They only alleviate symptoms.
You will find a breakdown of each current clinical trial. Most disease modification clinical trials seem to require that one not be taking medication. The majority of trials are testing the intervention of the experimental medications at the early stages of Parkinson’s when most are not taking c/l yet.
That is the website where I found the trial and it is Phase 2, double blinded with placebo. I will talk to my neurologist but I wanted to hear what others have to say and how they have made the decision as to whether to start on approved medications or to enter a clinical trial. It is a difficult decision to make. Thank you for your response.
"Certain medications for PD will be allowed at enrollment for a subset of participants."
So it is likely you could start medication if you need it, and participate in the trial.. Keep in mind that Parkinson's medications are for symptom relief only - if you do not need symptom relief there is no point in taking them.
It looks like a 48 week trial. The quoted comment would seem to imply medication changes would not be permitted during the course of the trial.
Best to confirm all the foregoing with the trial sponsor.
Park Bear is correct. The best thing is to contact the trial contact:
Name: US Biogen Clinical Trial Center
Phone Number:
866-633-4636
Email: clinicaltrials@biogen.com
If you scroll through the locations you will see all 111 locations have contact names and phone numbers. Best to consult with them before you start any medications. It might help you get your toe in the water and/or foot in the door.
I was in a Roche study for five years. Still can not confirm whether it had any positive or for that matter negative effect. I would choose to do it again if I had the opportunity. However, I would certainly make sure that there were no troubling adverse effects to cohorts in the phase 1 trial. And, always know that you can drop out of the trial at any time!
Red light therapy, acupuncture , dr greg eckel has lots of therapies and testing to help find root cause, book fighting parkinsons and winning, and john Coleman's rethinking parkinson s disease. These will get you researching all kinds of things to try.
BIIB122 is an investigational central nervous system-penetrant small molecule inhibitor of leucine-rich repeat kinase 2 (LRRK2).~ From clinical trials site shared by Park_Bear
I know someone who's been on it for about 8 month. His neurologist isn't allowed to prescribe him meds for 2 years or until he drops out.It's hoped it will help stop progression. He's not sure it's helping but then he could be getting the placebo. If he is on placebo he'll get offered the real thing for a number of months, if he wants.
But that's his story. Talk it through with a neurologist.
Before going into a lot of expense, I would suggest that you start to do some Fast Walking!
I have walked, as fast as I could, for one hour, every second day, ever since 1994.
At the beginning, I could only walk for a few minutes but, slowly, I got to that magic ONE HOUR.
I have been PD SYMPTOM-FREE for 32 years.
The medical profession do not like me telling you this but, it really does work.
For the first two years, I took all sorts of medication but, none of it worked.
Then my late wife begged me to join her in her FAST-WALKING PROGRAMME.
I joined her and, within six months, I found a huge improvement in my condition.
I have been walking, as fast as I can every second day, for one hour, ever since then and, I have never looked back.
I will be turning 90 years of age in October and, I have no reason to believe that I will not continue to enjoy my life for many more years.
I keep myself occupied by responding to the many emails I receive every day., how to walk consciously. In other words, they consciously place each foot onto the ground and don't try to WILL THEIR FEET TO NOVE!
Hi. I have lived with PD for the past 32 years. At the beginning, I tried all the meds. with no success. Then my late wife persuaded me, against my better judgement, to join her FAST- WALKING PROGRAMME.
Within six months, I started getting better and, after two years, nobody, including myself, would ever know that I still-have PD! There is NO CURE FOR PD!
I turn 90 years old in October and, I hope to live, with my PD, for many more years to come.
I am enjoying my life to the full and, have, since then, helped thousands of other PD patients to do the same.
Many years ago, I travelled to all the English-speaking countries and held meetings in many venues, over a period of more than six weeks.
NOBODY WITH PD WAS UNABLE TO WALK NORMALLY, AFTER HAVING BEEN SHOWN HOW!
I TURN 90 YEARS OLD IN OCTOBER AND, CANNOT EVEN THINK OF GOING ALL OVER THE WORLD AGAIN, TO DO THE SAME.
HAVE YOU GOT ANY SUGGESTIONS ON HOW I CAN GET MY MESSAGE OUT TO EVERYBODY IN THE WORLD?
Haha --- yeah, I tried to get John to get anyone that has "reversed" their symptoms as he states he has, to come on here and back him up --- but he refused. You'd think just one, just one person would come forward.
I already have! I am now 90 years old and still going strong.
I spend many hours answering hundreds of emails from other PD patients.
I do not have the time to make notes of everybody I have helped but. there are mnay hundreds, if not thousands who have managed to turn their lives around.
I would need a staff of at least two people to do all this work. I just do my best
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