What is happening with Parkinson’s research in 2020?

“Grow every stem cell,
search every gene,
sequence every exosome,
till you cure PD!”

Tom Isaacs, to the tune of Climb Every Mountain, for the World Parkinson’s Congress 2016

Dear Readers,

For the past 4 years I have tried to summarize for you any PD research that I have come across in layman’s terms, so that it is easier for all of us to understand. In my last post, I stated that I was optimistic about finding a cure and disease modifiying treatments in the next couple of years. I just received a blog post from The Science of Parkinson’s about the current clinical trials that blew me away. The road ahead: 2020 reviews much of the clinical research that is focused on disease modification in Parkinson’s. I knew there is a lot going on with research, but had no idea to what extent. So yes, I am still optimistic that the next couple of years will be some major breakthroughs for us.

There is no way I can summarize all of this for you. My head is spinning just from scanning through the entire article. I need to go back and study it more closely. Here is what the author, Simon Stott, the deputy director of Research at the Cure Parkinson’s Trust, says he will be focusing on:

As stated in the intro, I am going to focus primarily on clinical trials of potentially disease modifying experimental therapies in this post, as a broader discussion of ‘all Parkinson’s research in 2020’ is too greater task.

And in keeping with previous years outlooks, I am going to frame this discussion around the idea that:

Any ‘curative therapy’ for Parkinson’s is going to require three core components:

  1. A disease halting mechanism
  2. A neuroprotective agent
  3. Some form of restorative therapy

Now, the bad news is (as far as I am aware) there is no single treatment currently available (or being tested) that can do all three of these things. By this I mean that there is no disease halting mechanism therapy that can also replace lost brain cells. Nor is there a restorative therapy that stop the progression of the condition.

That statement can obviously be read as bad news, but it shouldn’t.

Let me explain:

A curative therapy for Parkinson’s is going to need to be personalised to each individual, with varying levels of each of the three component listed above. It will be a multi-modal approach designed for each individual’s needs.

For the rest of this post click here.

Warning, this will most likely make your eyes glaze over after a few minutes. Don’t plan to read everything at one sitting. It will take you hours to go through it all. Even if you do not understand it all, I think it will give you some hope for the near future. Enjoy.

Impulsive behaviors and Parkinson’s Disease

“What are you doing?” cried Mr. Twitchy.  “Is this because of the Parkinson’s?”  I was trying to clean out a closet, but my timing was awful.  Our kids were coming for early dinner so that we could go to Rosh Hashanah services.  And here I was emptying a closet, as if I had nothing better to do.  After writing about getting rid of the clutter a couple of weeks ago, I just had to move ahead on my promise to do so.  And nothing was going to stop me, except of course, Mr. Twitchy, who brought me to my senses.

In Parkinson’s disease (PD), ICDs most commonly include pathological gambling, excessive spending and hypersexuality.

So when do our actions become obsessive or compulsive?  And why?  According to the American Parkinson Disease Association (APDA):  “Impulse control disorders (ICDs) are behavioral disturbances in which a person fails to resist the drive to behave in ways that result in distress or impaired social and occupational functioning. In Parkinson’s disease (PD), ICDs most commonly include pathological gambling, excessive spending and hypersexuality. It is not uncommon for individuals to have more than one ICD concurrently or an ICD other than those listed above, i.e. impulsive eating, skin picking……It is the unusual extent and frequency of ICD behaviors that make them maladaptive and detrimental.”

Scientists have found a strong association between impulse control disorders and Parkinson’s meds , expecially the Dopamine agonists such as Requip and Mirapex.  However, a very small percentage of Parkies are afflicted by this.  Often a change in medications will reduce or eliminate the impulsive behavior.

That’s nice, but I think that the real reason is that those little “dopamine rushes” that we get from doing these things, whether it is going on a shopping spree and spending too much money, or sitting for hours in a casino, with each little win keeping us from leaving the table, are what is really driving us to continue following these impulses. It makes us feel good. And our dopamine deprived brains love it and keep us seeking more.

In my case, Mr. Twitchy often lets me know when I am focusing too much on the wrong thing, and he is usually right.  I could spend hours playing games on my phone, or doing something on my computer, totally losing track of the time.  The two hours in the morning before I have to leave for yoga often disappear and I find myself literally running out the door to get there on time (it is a 10 minute walk from my house).  When the impulse strikes, time management is impossible. But my brain is happy! So what’s the problem?

I suppose it could be worse.  I could be gambling or maxing out my credit cards somewhere.  But right now, I still need to clean out that closet.

Parkinson’s Target Practice and other Things

Sometimes it seems like Parkinson’s Research is a bit like Target Practice.  If you try to come at it from a lot of different angles, eventually something is going to hit the bullseye.  It is almost impossible to keep up with all of the different research projects looking for a cure or even just a way to slow down and stop the progression of PD.

Some examples from this past week alone include fish that sense magnetic fields, effect of different frequencies of DBS on gait, and chaperone proteins. Huh?  Someone please interpret!!!!

  1.  This study from  Michigan State University (MSU) : A fish that can sense the Earth’s magnetic field while it swims could help scientists understand how the human brain works and eventually unlock strategies to help control movement impairments in patients with Parkinson’s disease and other neurological disorders, a study reports.
  2. Low-frequency subthalamic deep brain stimulation (STN-DBS), but not high-frequency STN-DBS, reduces freezing of gait in Parkinson’s patients while preserving their ability to simultaneously process motor and cognitive information, a recent study shows.   The study, “Decreasing subthalamic deep brain stimulation frequency reverses cognitive interference during gait initiation in Parkinson’s disease,” was published in the journal Clinical Neurosphysiology.
  3. Low levels of a specific chaperone  protein might be implicated in the development of Parkinson’s disease and Lewy body dementia, according to new research at   University of Alabama at Birmingham.   Researchers investigated the role of a protein  called 14-3-3θ — a type of protein that can assist other proteins to assume a proper shape. “The study suggests that 14-3-3θ may be a suitable target for efforts to slow the progression of neurodegenerative diseases, although more work is needed,”  according to  Talene Yacoubian, an MD and PhD, associate professor in the Department of Neurology at UAB.

Other interesting stuff:

  1. I just finished listening to
    Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined
    by fellow WPC blogger Tim Hague.  He tells his fascinating story of growing up as a bi-racial child in a large, warm adoptive family, his Parkinson’s disease, how he and his son, Tim, Jr. got into The Amazing Race Canada (Season 1) and finished in first place, and more.  I really enjoyed the book and finally met Tim last week at the Davis Phinney Victory Summit in LA.  Well done, Tim!
  2. And in the “what was I thinking department“, Mr. Twitchy and I went to the Fox Foundation’s Parkour 4 Parkinson’s event in LA a few weeks ago.  I am not sure what got into me, but I had to try the course.  According to PD Ninja, Jimmy Choi, there were only 4-5 of us Parkies there who actually tried it.  Mostly it was agile kids and teenagers having a great time. (watch for the young girl behind me on the ropes).  I should have known better, but once I was there, any brain cells that I still have left apparently forgot that I am not in Middle School.  Here is the video that Mr. Twitchy took of my attempt at being a Ninja Warrior!

Has a real cure been found for Parkinson’s Disease?

You may have seen the news this week about the latest “cure” for Parkinson’s Disease.

“A cure may be on the horizon for Parkinson’s as scientists have found an experimental drug can slow down its progression and stop symptoms.

NLY01 has been called ‘amazingly protective’ as preliminary trials showed it blocked brain cells from dying.”

Researchers at  Johns Hopkins University  are optimistic that the drug NLY01 will go to clinical trials on humans later this year.  The drug, which is similar to those used to treat diabetes, was able to slow Parkinson’s progression and ease symptoms in mouse trials. We have been hearing a lot in the last few years about repurposing diabetes medications for Parkinson’s Disease, so this new drug trial seems to be a logical next step in the development of a drug specifically for PD.

Should you go out and scream from the mountain tops that the cure has been found? Probably not yet.  But this trial gives us reason to be cautiously optimistic.   Researchers are investigating so many different angles to delaying or stopping the disease, that at least one of them may just be what we have been waiting for.Compound Similar to Diabetic Medications Slows Parkinson’s Progression in Mouse Study

Will NLY01 work for everyone with PD, no matter what stage they are in?  That is a question that still needs to be answered with the upcoming clinical trials.  But if this new drug can really stop PD in its tracks for those who have been newly diagnosed, it will be a game changer.   While Parkies have already shown that we can lead productive, healthy and long lives, if NYL01 actually delivers on its potential, it could make that better, easier and who knows, maybe even cheaper.

Fingers crossed (or whatever works for you); we’ll just have to wait and see.

If you are a science geek, you can read about the study here:  “Block of A1 astrocyte conversion by microglia is neuroprotective in models of Parkinson’s disease,” which was published in Nature Medicine.  For the rest of us, click on NLY01 instead, which is written in language that most of us can comprehend.

Buyer Beware – the Snake Oil Salesmen are Back

Letter from Mark Twain to a snake oil peddler: “You, sir, are the scion of an ancestral procession of idiots stretching back to the Missing Link”

1905

Did you know that the latest snake oil salesman is lurking in your computer?  Yes, they are baaaaaack.  Buyer beware.

About every 2 months, I get a comment on my blog from someone claiming their mother/sister/brother with Parkinson’s was cured by a “miracle product” that was made especially for Parkinson’s.  In fact, 3 have been identical except for the name of the person making the comment.  An herbal company in South Africa or Europe or somewhere else is offering this miracle drug.  Of course it is not a miracle drug and they will charge you an exhorbitant price for it, which you will be happy to pay if you believe their hype.  If you go to the company’s website, you will see that the same “cure” is offered for any number of conditions, not just PD.  Others post “cures” or products in Parkinson’s Facebook groups that are dubious at best.  But they get wide distribution this way and can reach out to Parkies who are desperate to make their situation improve, without real “drugs” of course, because by taking those drugs they are admitting that they are “sick”.

So how do you know what is real and what is snake oil?

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First, ask your Movement Disorders Specialist or Neurologist if they have heard of this product.  If they don’t know about it, ask your pharmacist.  They can look at the ingredients and give you a better idea about whether the product is legitimate or not.

Often these “cures” are just a combination of supplements that you may already be taking, but because they are packaged together as a “cure” the company will charge 3-4 times what you would pay at the local drugstore when buying the individual products.  Then there is the issue of the quality of the ingredients.  With any supplement that you take, you need to be aware that the actual amount of the calcium, B12, Co-Q10, etc. can very widely from brand to brand.  Again, check with your doctor or pharmacist about the quality of the supplements.  They can hopefully steer you towards the more reliable brands.

A Quick Google search turned up several websites that you can check for recommended brands.  The three that seemed most reliable are  Consumer Labs,  Labdoor  and Quality Supplements

And then there is also the question of toxicity and interactions with the Parkinson’s drugs that you are already taking.  Before taking any supplement, read warning labels about interactions and if there is any question, check with your doctor or pharmacist to make sure that it is safe to take with your PD drugs.  The last thing you want to do is end up in the hospital from a bad reaction.

The bottom line is this.  Don’t fall for anything that promises you a cure.  There are NO known cures for Parkinson’s at this time.  Be critical about what you read.  Ask questions and most of all, be aware that someone is trying to make some money off of your misfortune.  The snake oil salesmen have been around for thousands of years and unfortunately, are not going away any time soon.