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.

100 and counting

Wow, it has been an interesting journey!  I started writing this blog in March, 2015, as a way to share my experience with Parkinson’s Disease with others.  I never imagined that I would still be writing almost 2 years later, with this my 100th post!  15 people read that first post when it was published.  Now my subscribed readers number several hundred, with many more just checking in, coming from 76 different countries.   I want to thank all of you for your support over the last 2 years.

Looking back on the past year, there have been many exciting findings in Parkinson’s research.  The most important is the change in thinking about how Parkinson’s gets started.  Research now points to changes in the microbes in the gut as the trigger for setting off Parkinson’s symptoms.*  What this means for us:  a possibility for earlier detection with a screening test, and new treatment options that begin before damage to the brain occurs.  To learn more about it, register for Michael J Fox Foundation’s next webinar  on January 19, titled  Gut (Bacteria) Check on Parkinson’s: Role of the Microbiome.   Maybe this will be the year………

There has also been a world-wide effort to change the image of Parkinson’s from the stooped over, shuffling person to someone who is actively enjoying life with PD. Photographer Anders Leines‘ photo exhibit at the World Parkinson’s Congress was highly successful.  There is also a Facebook page, Many Faces of Parkinson’s that is working to change that image.  The World Parkinson Coalition has just published a book Faces of Parkinson’s: Global Reflections of PD which can be ordered through their website.

Exercise has also been a positive force this year for PwP.  Many studies have shown that exercise can be more beneficial in relieving Parkinson’s symptoms that anything else. See Exercise May Be Real Medicine for Parkinson’s Disease.  Yoga, boxing and tennis keep me going.  If you are not exercising, 2017 is the year to get moving.  There are so many options, either in group exercise classes, online videos or just walking.  Just check with your doctor before beginning any exercise program.

I was fortunate to attend the World Parkinson Congress in Portland in September.  This amazing conference brought together over 4300 people from around the world, People with Parkinson’s and their caregivers, doctors, scientists, and many others in related fields for 4 fabulous days. I am so glad that I met many of you there.  I hope that we can all meet in Kyoto in 2019 at the next WPC!

My Parkinson’s resolutions for 2017:

  1. Keep on moving:  exercise every day.
  2. Keep a positive attitude.  Look in a mirror and smile – it will brighten your day.
  3. Participate in PD research.  PwP’s are an important part of finding the cure,
  4. Get more sleep.
  5. Hug my grandchildren as much as possible for they are the best medicine! (Thank you Linda B for saying that).

Have a wonderful and healthy 2017!

Some photos from 2016

 

 

 

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!

 

Make your voice heard. A study for all People with Parkinson’s

Do not let what you cannot do interfere with what you can do.

John Wooden

One of the most important thing that we, as People with Parkinson’s can do, is to take part in clinical trials.  There are many trials that have very specific criteria for participants.  And often, these trials do not get enough people to participate in order to complete the study because they are so specific.

But there is one trial that anyone who is reading this blog can participate in.  The study is being conducted by Laurie K Mischley, ND, PhD, MPH, at the Bastyr University Research Institute and is titled Complementary & Alternative (CAM) Therapies in Parkinson’s Disease.  You do not need to leave your home.  You do not have to meet with a doctor, take medications or any kind of tests.  All you need is a computer with on-line access, an email address and basic computer literacy.  You do not need to use CAM therapies to participate.

I spoke to Dr. Mischley at the WPC about the study.  The goal of this PD study is to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The theory behind the study is that of “Positive Deviance”

“Positive Deviance is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.

The Positive Deviance approach is a strength-based, problem-solving approach for behavior and social change. The approach enables the community to discover existing solutions to complex problems within the community.” *

I have been involved in this study for about 2 years, so it was a pleasure to meet Dr. Mischley to talk about what she is doing.  She told me that so many studies look at what happens before a person is diagnosed with PD.  Her study seeks to look at PwP’s from diagnosis forward to see why some people do better than others.

Every six months I get an email from Dr. Mischley with 2 questionaires to complete.  It does not take more than 90 minutes to complete.  If you are interested in participating or would like more information, go to the website at http://www.CAMCarePD.bastyr.edu.

www.positivedeviance.org

 

WPC Continued….Beware, this may “make you dopey”

Thursday afternoon I went to a very informative session on “Speech and Swallowing”.  There are several points that are worth sharing.  First of all, voluntary coughing is a good thing as opposed to a reflexive cough that occurs when you swallow wrong.  If you are having problems with swallowing , you should see a Speech Pathologist who specializes in PD for an evaluation.  There are many non-medical treatments that are available such as postural changes, diet modification and LSVT/LOUD training.  LSVT/LOUD trains you to speak louder and also strengthens the muscles in your throat that are involved in the swallowing reflex.  There are progams available on-line, but the speakers all recommended working with a Speech Pathologist and using the programs for practice.  The other interesting fact is that the Basal Ganglia in your brain gives the feedback to your speech.  In PD it does not function well and the perception is that your voice is louder than it actually is.  So when others complain that they cannot hear you, think about going for a speech eval.  Finally, sing!  Singing can have a positive effect on your speech.

We all know now that exercise is an essential part of any therapy for PD.  “Exercise as Treatment” reinforced the need for exercise of any kind.  Your brain becomes engaged when you exercise.  It switches from automatic functioning to more cognitive, which in turn can create resiliency/plasticity in the brain.  In other words, your brain is adapting and reconnecting, forming new pathways.  The more complex your exercise, the more effective it is.  A combination of more than one type of exercise is optimal.  If you are new to exercise, you need to work with someone who understands PD and can adapt an exercise program that works for you.  The biggest issue with studies for exercise and PD is that most studies only use people with mild or moderate disease.  People with more advanced PD need to be included to see if they can also benefit from exercise.

Finally, the standing room only session on Complementary Care (CAM) did not disappoint.  CAM care is not embraced by many doctors, but is very popular with patients.  And the research is beginning to prove that it does help in many ways.  Although he had no samples for us to try, Dr. Benzi Kluger spoke about the benefits of Cannibis and the different forms that are available.  Some of his slides are below for your enjoyment.  Dr. Indu Subramanian, who happens to be my MDS, talked about Yoga and its benefits for PD, challenging the doctors in the room to encourage their patients to give it a try.   Dr. Laurie Mischley spoke about her studies using Glutathione for PD, something which is definitely not on the radar of many doctors. The results of the few studies are inconclusive.  Some show benefit, others don’t.  Finally, after some technical difficulties, Matt Ford entertained us with music that we can all relate to, using it as therapy.  He began with “Staying Alive” from Saturday Night Fever and then showed a video of a man who could barely move until he put on some music.  You would never know that he had PD.  At the end, everyone was singing and dancing in the aisles.  He left us wanting more!!!