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!

 

Ups and Downs

You suffer the blow, but you capitalize on the opportunity left in its wake.

I try to stay upbeat about having Parkinson’s, but some days things just don’t go right.  Actually, it is some weeks.  As I wrote a few weeks ago, I kept losing things.  And then, I ran out of Requip.  I thought I had another bottle, but I couldn’t find it.  An email to the mail order pharmacy to renew the prescription followed.  But the prescription had no refills left and took a few precious days to get approval. The meds were shipped out, but then disappeared!  There was no tracking info, so I called them back to get approval for an emergency refill, which  was approved.

When I went to the pharmacy the next morning, I was told that no, the mail order pharmacy did NOT approve the emergency refill.  So I spent the next 45 minutes arguing with the bureaucracy that insisted that the medication would come that day, so they would not approve it.   Yes, the refill came in my mail, very late in the day.  By then I had been off of it for about 4 days and was feeling the effects of withdrawal from it.   To make a long story short, it took about 10 days from the time I ran out of Requip until I started feeling halfway normal.

This all happened because I lost track of my prescription.  It was my mistake that was exacerbated by the insurance company policies.  As Michael J Fox says, you have to capitalize on the opportunities that your mistakes have created.

I think I am done with mail order prescriptions.  My life is too stressful as it is, and I certainly don’t want to add to it.  My local little pharmacy takes care of me just fine and I would rather give them the business.  As someone who takes multiple medications, as I am sure most people with Parkinson’s do, it is important to have some control.  When the insurance companies take that away from you, there is little you can do.  I can’t imagine how people who don’t know how to advocate for themselves and work the system manage to get the care and meds they need in a timely manner.

Today we are leaving for a 3 week trip to Spain and Portugal and the most important thing on my checklist is “where are my meds?”  Everything is in my carry-on bag which will stay with me the entire time.  In the original bottles with the prescription number and name of the medication.   I can’t risk any more down days while on vacation.  Now I am in control.

 

 

Sharing some interesting news

There have been a number of interesting stories on the internet this week and I would like to share a few of them with you.

Parkinson’s Passport

First, the European Parkinson’s Disease Association has developed the Parkinson’s Passport.  The Parkinson’s Passport enables you to complete an getresourceinformation booklet about your medications and treatment and then carry it when you are out and about or traveling abroad.

Apple Care Kit

Apple has unveiled its CareKit health tracking platform and the first app, which will be available in April, is for Parkinson’s Disease.   carekithitn

“When we introduced ResearchKit, our goal was simply to improve medical research and we thought our work was largely done,” Apple COO Jeff William said during an event on Monday. “But what became clear to us is that the same tools to advance medical research can also be used to help people improve care.”

Williams added that the first CareKit app is for Parkinson’s, a natural condition to target because 24 hours after Apple made ResearchKit available it led to the biggest Parkinson’s study to date.

Particular to the disease, researchers can see symptom levels across a range of days before and after medication starts, meaning physicians can track whether the treatment is actually working for a certain patient or not – if they have access to that data. The first CareKit app, Williams said, surfaces that information for patients and doctors.

At the launch, six institutions agreed to immediately begin using the app: Emory, Johns Hopkins University, Parkinson’s Disease Care New York, Stanford, the University of California at San Francisco and the University of Rochester.

Williams said the app will enable them to have more formalized conversations with patients about treatment.

Rosacea

Do you have Rosacea?  A study in Denmark linked a higher risk for Parkinson’s in people with Rosacea.  As reported in  Parkinson’s News Today The incidence rates of PD were 3.54 per 10,000 person-years in the general population, and 7.62 per 10,000 person-years in people with rosacea. PD was also found to occur about 2.4 years earlier in those with rosacea.

New Stem Cell Treatment Approach for Parkinson’s

Also from  Parkinson’s News Today Rutgers and Stanford University researchers have developed 3-D “scaffolds,” or fibers, that can support healthy and high-functioning human neurons derived from adult stem cells, which can be transplanted to the brain to replace diseased neurons. The technology represents a possible new therapeutic strategy for numerous neurological conditions, including Parkinson’s and Alzheimer’s disease, amyotrophic lateral sclerosis, and multiple sclerosis.

April is Parkinson’s Awareness Month

Look here later this week for information on how you can get involved.