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”

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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

 

 

Much Ado about Parkinson’s

As we celebrate the 200th anniversary of Dr. James Parkinson’s groundbreaking essay of “The Shaking Palsy”, there seems to be a flurry of announcements of possible breakthroughs in diagnosis and treatment of Parkinson’s.  Eight years ago, when I was first diagnosed with Parkinson’s, the prevailing theories all stated that PD was a disease that started with “dopamine-producing cell death in the brain.”  Sometimes the cause was genetic.  Other times exposure to pesticides or other chemicals were to blame.  But most of the time, there was no apparent cause.  Just 6 months ago, at the World Parkinson’s Congress, we began to hear about  different ways of looking at PD.

We have known for years, that Parkinson’s is a designer disease.  The progression can be very different for each person.  But now doctors and researchers are looking at PD as a group of syndromes, not just a single neurological condition that caused movement disorders.   Many other symptoms and diseases not typically considered Parkinson’s were now seen as part of PD.    There have been a lot of studies of possible treatments that seemed promising, but the hope for a cure still seemed elusive.  In fact, one of the speakers at the WPC, whom I believe was Tom Isaacs, quipped that the cure was always 5 years away, no matter what the research said.

But something has changed since then.  In the last few months, researchers are coming out with reports that Parkinson’s does not start in the brain, but may actually start in the gut.  Many say the culprit in some cases may be microbiomes in the gut. WOW!  If this is true, scientists at Caltech say it may mean that PD can be detected much earlier and drug treatments can be designed to remove those nasty little bacteria that are causing problems in our gut and our brain.  This treatment may also be more effective because medications

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Credit:  Caltech

can easily be absorbed in the gut, unlike treatments for the brain, which is protected by the blood brain barrier.  There has been much written about this, and it is probably confusing for most of us who are not researchers.   I am not a biologist, or a scientist, but I do understand that treating the cause much earlier, if it is in fact in the gut, is much easier that treating the damaged neurons in the brain, especially since symptoms don’t appear until it is way too late to reverse the damage.

Here is a quick look at some of the other announcements over the last few weeks:

  • Biomarkers  can be used to used to define disease subtypes.  “This precision-medicine approach will likely yield smaller, but well-defined, subsets of [Parkinson’s disease] amenable to successful neuroprotection.” according to Alberto Espay, MD, who conducted a study titled “Precision Medicine For Disease Modification In Parkinson Disease.
  • Last week the FDA approved Xadago   (Safinamide) for people with Parkinson’s disease (PD) who are taking levodopa but experiencing “off” episodes.
  •  Also last week, researchers from the University of New Brunswick    found that an extract from the brown seaweed Alaria esculenta can prevent this conversion and, therefore, could be useful in avoiding the onset of the disease or delaying its progress.”  Ok.  Does this mean we should eat more sushi?
  • A new study published in the Annals of Neurology suggests that redheads may carry a gene variant that increases the risk of both Parkinson’s disease (PD) and melanoma. Researchers have long known that having either PD or melanoma heightens the chances of developing the other condition, but it’s been unclear exactly why.  What if you are blonde and have had both, like I have???  I think this means I am in trouble….
  • The Food and Drug Administration finally gave approval for 23andMe to sell to consumers genetic tests and their accompanying health risk reports for up to 10 diseases, including late-onset Alzheimer’s and Parkinson’s.
  • And finally, the New York Times declared that exercise is good for us old people.

All kidding aside, it seems that the big breakthrough may just come in less than 5 years, which would make all of us very happy.

An evening of Hope

Research begins with the patient, not in the lab

Professor Tamir Ben-Hur

25 people packed into my family room on Monday night to hear Professor Tamir Ben-Hur, the Israel S.Wechsler Chair in Neurology at  Hadassah Hebrew University Medical Center in Jerusalem, speak about the future of Parkinson’s research.  The one word we kept hearing throughout his presentation was “Hope.”  The standing room crowd listened intently to his presentation, hoping to hear those magic words:  we have found a cure for Parkinson’s.  But we all know the reality of our situation, and the best we can hope for now is an improvement in our lives with PD.

Prof Ben-Hur spoke about 3 key points.  First, he spoke about treatments being developed for PD.  One is using stem cells for treatment of Parkinson’s Disease.  Animal models have shown some success with stem cells generating dopamine neurons and movement functions improved.  Unfortunately, the implanted stem cells did not survive very well in humans.  It has taken 10 years to develop an improved method to generate stem cells and implant them and trials in humans will begin soon.   There is an international multi-center effort to find a way to do the tranplant successfully.  It is most likely that they will recruit patients who have movement symptoms. The downside is that side effects  may include increased diskinesias.

He spoke about the direction of DBS (deep brain stimulation) research.  DBS is the most important therapeutic option today. The most difficult thing is finding the exact spot in the brain to place the electrode.  The process he described was amazing.  If the surgeon misses by a mm, the emotional part of the brain can be affected with terrible side effects.  Prof Ben Hur is very excited about the next generation of DBS.  Researchers are looking at a Closed Loop system for DBS.  Brain activity can be read by the system.  When pathological activity is identified, the stimulator will be activitated to correct the symptoms.  It has been shown to work in animal models and is now in development for human patients.  Prof Ben Hur says that this should be available in a few years.

Second, he spoke about what we can do to prevent the disease.  We need to develop a means of early diagnosis to stop the disease early.  In PD, when pathological symptoms occurs, approximately 50% of the neurons have already died off.  Several areas being investigated are:

A blood test – when the brain cells die, some of the DNA shows up in the blood.  There are specific fingerprints that tell us where the  DNA came from in the body.  The technological challenge is to identify such small amounts of DNA.  The hope is that the general population can eventually be screened for an accelerated death of dopamine neurons in the brain, well before clinical symptoms appear.

Another blood test being developed looks for alpha-synuclein aggregation, which may come from the gut nervous system before it moves to the brain, causing constipation.  It may begin as a systemic disease for some people, not in the brain.

Use of a new MRI process, a hyperpolarizer, that shows the metabolic activity of dopamine in the brain.  This has wide ranging implications for PD and for psychiatric disorders.

Finally, he talked the future.  He spoke about using simple solutions that are widely available, not expensive and have no side effects.  One is using powerful anti-oxidants that can cross the blood-brain barrier to reach the brain cells.  Punicic Acid from Pomegranites is one anti-oxidant that is being investigated with positive results.  It is being developed as a food additive, so that it does not need the expense of going through the FDA to get approval.  This should be available very soon.

The final frontier for neurologic diseases is to use bio-markers to predict how the disease will behave and how it will respond to medication.  Treatment can be individualized and specific to the patient.  This also has implications for pharmaceutical research.  Bio-markers can be used to  create clinical studies using a smaller well-defined group of patients for a shorter time period, therefore decreasing dramatically the expense and time-frame for developing effective drugs for approval by the FDA.

Professor Ben-Hur ended his talk with just one word:  Hope

There is Hope for the future in Parkinson’s research and treatment.  As Prof Ben-Hur said, he thinks this will occur during his lifetime – and ours.  Let’s hope he is right.

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Even my dog was entranced by the presentation!