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.

 

 

How much time do you really spend going to doctors?

Experience says to make your appointment so you’re the first one on the schedule in the morning or the first after their lunch hour.

Tom Sheppard

Do you ever feel like all you do is go to doctor’s appointments?  Feel like a drug addict as you take meds all day long ?   Make sure you are getting your daily dose of exercise? Sometimes it seems that there is no time left in your days to do anything else.

The other day I read a blog post on the Davis Phinney Foundation website by Tom Sheppard about making the most of your visits to your doctor.  Tom does a wonderful job outlining 5 steps you can take maximize your 15 minutes with your doctor.   As I read his list of doctors appointments in one year, I started to think about how much time I spend on doctors appointments and self-care.  You can easily fill your days with unwanted tasks, all in the pursuit of living well with PD.

I knew I was seeing a lot of doctors, but when I actually looked at my calendar, I realized that I had more appointments than I thought I did. To sum up, in 2017 I saw

  1. 25 doctors
  2. 36 appointments
  3. 9 Physical Therapy appointments,
  4. 2 procedures
  5. 2 MRI’s,  and other miscellaneous appointments.

We also traveled a lot, for a total of 17 weeks.  Which means that I saw at least one doctor a week when I was home.  It seems a bit excessive, doesn’t it?

Self care also includes exercise, which is essential, averaging an hour a day.  In addition, we need to make sure that we have all of the  medications that we take throughout the day, keep up with our health insurance claims and more.  Record keeping is also an essential part of self care.  The bottom line it that we spend a lot of time managing our own care.  You must be an advocate for yourself to get the care you need.  If you don’t have someone to help you, it is easy to become overwhelmed.

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On a different topic, I don’t normally like to endorse products on my blog.  But after a friend fell and ended up in the emergency room and no one there was familiar with her PD meds, I both decided it was time to get a medical ID bracelet.  I found a great selection of fashionable ID bracelets on a website called Lauren’s Hope.  I get a lot of compliments on my new “bracelet”.   Check out their website by clicking on the photo here:

Medical ID Bracelet

Warning: Possible side effects may include…..Can we get rid of those annoying drug company ads, please?

 

Several weeks ago I participated in a study for a drug company ad.  I did not know ahead of time what I was being recruited to do, which is probably a good thing.

Before I continue, permit me a short rant:  I hate TV drug ads. Really HATE them.  Who wants to watch late stage baby boomers (us!) sitting on the beach holding hands or playing with their dog (always a Golden Retriever) while some guy whispers in a rapid fire undertone a list of possible side effects that includes possible head explosions and alien abductions?  And then I am supposed to do what with this wonderful information?  Go ask my doctor to prescribe it?  Like she wouldn’t know without my asking?  Has anybody ever actually done that (well, other than for Viagra)?  Would you want to be friends with, or even converse with, anyone who did?  And don’t get me started on the new disease acronyms they invent.  Hey Big Pharma, here’s an acronym for you.  STFU and lower the price of the drugs for us consumers.

So where was I?  Oh, yeah, the study.

It was a suprisingly good experience and I will be curious to see what the ad finally looks like.  The study was for a print ad for a Parkinson’s drug.  I participated from the comfort of my home, using my computer with a video hook-up to the interviewer.  The different concepts presented were interesting.  I thought that only one of the six ads presented actually addressed what the drug was for.  The others were trying to create an “image” for the drug.  One showed a very healthy person with (of course) a Golden Retriever, another looked like a Beer ad, and yet another belonged in a Women’s magazine 50 years ago.  They asked for my opinion and I was very candid about what I thought worked and didn’t work and why.  I hope that they are actually listening to us when they create the final ad.

If you are asked to participate in a focus group study for a drug company, please say yes and make sure that they know how you feel about these ads.  They really serve no purpose for us as patients.  We get the information we need  about new drugs and treatments from reliable sources on the internet and our doctors.  We don’t need the drug companies to tell us what we should be taking.  If their drugs really work to combat PD, we will know about them and ask for them without being subjected to these ads.

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Fake ad designed by Justine Cooper