Parkinson’s research at Stanford

I’m going back to my alma mater, Stanford University, for a reunion.  So I thought I’d poke around and see what they are doing in Parkinson’s research these days.  Stanford, home of the integrated circuit and the birth control pill, was no slouch in the sciences when I was there.  But over the last decade or so, it has become a powerhouse of biological research, especially in the neurosciences.  This post will describe some intriguing current projects dealing with Parkinson’s.  A future post will cover a larger perspective on funding and topics for brain research at Stanford (featuring a special guest!)

Dr. Xinnan Wang (Credit: Norbert von der Groeben)

Messed up Mitochondria —  Mitochondria are the “power packs” of cells, including nerve cells (neurons).   Xinnan Wang, MD, PhD, assistant professor of neurosurgery., led a team that located a neuron defect prevalent in Parkinson’s patients.  The neuron can’t get rid of a worn out mitochondria;  instead the aging jalopy of a mitochondria starts spewing out toxic pollutants and eventually causes the neuron to die.  The defect may provide a biomarker for Parkies.  Biomarkers are an objective measurement of a medical condition, typically using a body fluid sample, like blood or urine.  There is no biological dipstick (yet) to measure how low your brain is on dopamine –this is why biomarkers are the Holy Grail of Parkinson’s research.

Helen Bronte-Stewart in the new Stanford Neurosciences dance studio

Dr. Bronte-Stewart in Parkinson Dance Studio (Credit: Stanford)

Dancing Doctor — Helen Bronte-Stewart, MD, MS — Besides being a movement disorders specialist, a neurologist specializing in  Parkinson’s, and a Deep Brain Stimulation (DBS) specialist, Dr. Bronte-Stewart has a background in dance.  She brought the Dance for Parkinson’s program to Stanford, and she also runs the Balance Center, which features something called Computerized Dynamic Posturography.  This measures in an objective way the factors that go into your sense of balance.  Bronte-Stewart’s lab has developed several quantitative metrics of movement disorders such as bradykinesia, tremor, and freezing of gait   Recent advances in wearable physiosensors and sensing neurostimulators are now enabling her lab to study the brain’s effect on PD motor signs in real time in freely moving human subjects.  This research is leading to the identification of plausible biomarkers of different movement abnormalities and more precise, targeted therapy using Deep Brain Stimulation.

Jin Hyung Lee

Jin Hyung Lee (Credit: Stanford University)

New way to map brain circuits — Jin Hyung Lee , PhD, associate professor of neurology,  has  a particularly apt background to map brain circuits:  neuroscientist AND electrical engineer. Lee’s circuit-mapping approach combines two experimental tools with a computational method. The first tool is optogenetics, which modifies specific types of neurons  so they can be turned on in response to light. The second  tool is called functional MRI, or fMRI, which measures blood flow in the brain. Increased blood flow is associated with increased activity. Using optogenetics to turn on a specific type of neuron, and fMRI to observe how other regions of the brain responded, Lee then used a computational analysis to map the entire, specific neural circuit and also determine its function.  This new mapping technique should help to better understand functions of neurons involved in Parkinson’s and enable neurosurgeons to more precisely target Deep Brain Stimulation.

 

Posted in Parkinson's People, Parkinson's Research, Treatment | Tagged , , , | 2 Comments

Laura’s Pharmacology Degree

I’ve been researching Parkinson’s drugs lately because soon I will have my regular 6-month check in with my neurologist.  My symptoms are still pretty mild, but have been increasing and I’m wondering whether I’m at the point where I need to switch to heavier pharmaceutical ammo.  I have decided I’m not going to switch yet, but we’ll see what the doctor says.  In the meantime, I have a whole new respect for pharmacists.

When I was first diagnosed with Parkinson’s, I thought: shortage of dopamine? Just take more dopamine, right? – kinda like insulin for diabetics?  But that won’t work because of something called the “Blood-Brain Barrier”.  This is a membrane around your brain that lets small stuff in but not blood or bacteria (sounds good) or large molecules like dopamine (dang).

However, there is a chemical precursor to dopamine, levodopa (sometimes called L- Continue reading

Posted in Parkinson's Basics, Side Effects, Treatment | Tagged , , , , | 2 Comments

Block and Tackle Alpha-Synuclein

GrowBacteriPetriDish_1

Per an earlier post, alpha-synuclein is the bad-boy protein behind Parkinson’s.  Very simplistically speaking, when alpha-synuclein proteins stop doing their job efficiently, they clutter up your brain and keep it from producing dopamine.  This July, Michael J. Fox Foundation announced five (FIVE!) alpha-synuclein decluttering therapies that are in early clinical trials.

Here’s a quick listing of therapies being tested.  Click on the links for more information, testing requirements and contact info.  Sign up with Fox Registry and you will routinely be emailed potential matches to participate in clinical trials.  Remember, these drugs aren’t gonna test themselves!

Therapy Company Status* at 7/2017 Notes
Alpha-Synuclein Antibody (PASADENA) Prothena/ Roche Phase 2 — Recruiting Diagnosed w/ PD in last 2 years
Alpha-Synuclein Antibody (BIIB-054) Biogen Phase 1 — No longer recruiting
Alpha-Synuclein Vaccine (AFFITOPE PD03A) AFFiRiS Phase 2 — Will be recruiting
Alpha-Synuclein Blocking (NPT200-11) Neuropore/ UCB Phase 1b — Will be recruiting Testing in Europe only
Alpha-Synuclein Binding (NPT088) Proclara (Neurophage) Phase 1 in process (see note) If current testing successful w/ Alzheimers, another Ph. 1 test with Parkinsons

*Human clinical trials (as described and required by US Food & Drug Administration):
Phase I:  Safety — What is safe dosage range?
Phase II:  Efficacy — Does the drug work?
Phase III:  Efficiency — Does the drug work better than existing drugs for same purpose?
Phase IV:  Toxicity — What are long-term effects? (Usually done after drug has gone to market)

Posted in Parkinson's Causes, Parkinson's Research, Treatment | Tagged , , , , , , , , | 2 Comments

When Good Proteins Go Bad

Image result for marlon brando motorcycle

My image of alpha-synuclein

I have read enough about Parkinson’s to know that it’s  got something to do with a bad boy protein called Alpha-Synuclein but I have not researched this area with enough, um, intellectual rigor.  So, time for questions and answers about alpha-synuclein.

What is alpha-synuclein, and how the heck do you  pronounce it?

Let’s take the easy question first: It is  pronounced alpha sin-NU-klee-in, and for heaven’s sake, let’s call it AS to simplify  this post.

Why is there so much focus on AS?

Because researchers find clumps of these bad-boy proteins in Lewy Bodies, the hallmark of Parkinson’s Disease. (Lewy is no relation to Huey or Dewey.) Continue reading

Posted in Parkinson's Basics, Parkinson's Causes, Parkinson's Research, Treatment | Tagged , , , , , , | 2 Comments

Anniversary

20170710_135953Laura on OR coast, 7-12-cropped-scaled

With a shock, I realize it’s been five years since the word “Parkinson’s” entered my life. Nearly everyone else who has Parkinson’s tells a tale of gradually becoming aware that something was wrong — “I didn’t know where my feet were below me.”

Not me.  On June 16, 2012, I woke up and, “as if by magic”, my right hand was tremoring.  That’s why I call this blog “The Magic Trick”.

Much has changed in these five years, and much has not. Here’s some of the major changes:

I’ve retired.  Removing the stress of a daily commute  and a fast-paced computer job was beneficial in permitting me to better manage my symptoms.

I’ve moved.  My husband and I lived in a two-story house with a circular staircase and extensive gardening chores — lovely house but not the one to age in place.  So we moved to a one-story rambler with no lawn.

I exercise.  This was a big reason why I felt I needed to retire – to get enough time to exercise.  One thing that hasn’t changed – I continue to kvetch about exercise and feel like it’s not very effective.  But I am working with yet another fitness trainer – more about that in a future post.

My symptoms have expanded .  More tremors,slower actions, drooling, uncoordinated vision and the latest: with my stooped over posture, I now walk like The Bride of Frankenstein.

My knowledge has expanded.   I started this blog as a way of finding out more about Parkinson’s Disease.  I’ve picked up a little knowledge,  but I’m just scratching the surface.

My social network has expanded.  Through this blog and through attending Parkinson’s conferences, including two World Parkinson’s Congresses,  I have met Parkies from all over the world. Hearing other people’s stories gives me courage and optimism.

What hasn’t  changed?

Constructive optimism.   I try to maintain an optimistic outlook, although I don’t always score 100% on the Pollyanna test – see “kvetching about exercise” above.  Constructive because I feel like I’m not being mindlessly optimstic,but tale specific constructive actions.  I still feel like Im really lucky.  Nearly everyone of my age is going to end up with a chronic disease – PD is not bad compared with cancer, diabetes, dementia, etc. etc

My husband. I have the good luck to be married to the most wonderful guy in the world, who (bonus!) bears an uncanny resemblance to George Clooney.  He is not in the “care partner” role yet, but I know he will be able to handle this job  as we celebrate anniversaries in the future.  We’ll be celebrating 25 years of marriage next January.

Posted in Parkinson's Basics, Parkinson's Causes | Tagged | 5 Comments

Swimming for Parkinson’s

Bruce Ballard swimsuit tuned.JPG

Bruce in 2016 swims-he raised over $4k.

I just wrote about hiking for Parkinson’s, and here’s another opportunity to donate– swimming for Parkinson’s.  As with the hiking, it’s no sweat – all you have to do is lift your credit card and donate.  My fellow Parki blogger, Bruce Ballard, is raising money again for Michael J. Fox Foundation by doing three one-mile swims…..IN THE ATLANTIC OCEAN!

Yes, you read right…Bruce is doing three open-ocean swims (as he did last year), wearing nothing but a Speedo and a smile.  (Because wetsuits/drysuits give some flotation and thus an unfair advantage, they are frowned upon.)  These three swims literally leave me breathless, since five minutes in the chlly Puget Sound here in Seattle would be instant  death-by-hypothermia.

Bruce’s three swims are :

– July 22: Grimaldo’s Mile (a one-mile race along the beach at Coney Island)

– August 12: Newburgh to Beacon One Mile Swim (not a race, but an open invitation to swim across the Hudson River from Newburgh to Beacon in upstate New York)

– August 26: Lake George 2.5 Kilometer Swim Race (about 1.5 miles)

Help out Bruce reach his $5000 goal – he’s about halfway there — but in swimming and fundraising you don’t want to be just halfway there!

20170605_193401

Paul and I got to have dinner with Bruce  (and Parki the Racoon) when we visited NYC this June.

 

Posted in Parkinson's People, Parkinson's Research, World Parkinson Congress | Tagged , | Leave a comment

Hit the trail for Parkinson’s

hikers-walking-in-line

The Pass-to-Pass team on their 2016 backpack.

Last year, I wrote about the Pass-to-Pass group of intrepid Parkis who backpacked a portion of the Pacific Crest Trail to raise money for American Parkinson’s Disease Association and Michael J. Fox Foundation.  I’m thrilled to report that they are hitting the trail again.  You can help them reach their ambitious goal of $20,000 by donating on their website, which has direct links to Michael J. Fox Foundation and APDA

Last year (their first), Pass-to-Pass raised $12,362.  They went 63 miles over 9  days, successfully renavigating on the fly to avoid over a hundred blowdowns (fallen trees).  Their route was from Stevens Pass to  Snoqualmie Pass with days as long as 9.5 miles (plus a healthy elevation gain!)  Nadean Meyer, one of the group’s “Trail Angels”, wrote me about the spirit of the group: “everyone helping others around swollen streams and… downed trees”

This year, Pass-to-Pass will tackle another portion of the PCT: From Rainy Pass to Suiattle Pass, 58 miles of glorious Washington Cascades over 9 days with a net gain of 5000 feet (over 1500 meters).   More details are on their website, including a donation page and bios of the team.  And you can hike with no sweat by following their blog and Facebook page.

I really like the team’s attitude, which they call Living LARGE.  Nadean defined this as  “a slogan and motto to not let PD define your life but to experience all things you enjoyed before your diagnosis and to find more adventures as well even if they need to be modified.”  Ah,” find more adventures”…maybe next year I’ll get into good enough shape to backpack again.  In the meantime, I’m warming up my credit card to donate!

IMG_5118

They made it!  Happy hikers in 2016 achieving their destination.

Posted in Parkinson's People | Tagged | 1 Comment

Discipline

A usual feature of Parkinson’s conferences is The Inspirational Speaker.  I have to admit that I find these speakers….um, inspiring.  The latest speaker I encountered (at an APDA seminar) was Stephen Bergenholtz , just ending his time on the board of the Pacific Northwest Chapter of American Parkinson’s Disease Association.

Stephen introduced the concept of discipline in managing a chronic disease like PD.  He came up with eight disciplines, which he lists in a blogpost on Michael J. Fox Foundation website.   As our dopamine declines, so does our initiative and motivation.  He writes, ” (A) substitute for loss of motivation is simply discipline. The word “discipline” may have negative connotations, but all it means is regular repetition of an activity until eventually it becomes comfortable, even pleasant.”  He ended his talk with the lovely quote from Colette, the French novelist: “What a wonderful life I’ve had!  I only wish I’d realized it sooner.” You can follow the link to see what his eight disciplines are.20170630_173419[1]

Mine are a little different, and I would expect everyone would have different areas to work on.  (Yes, “work on” — if you think I’m carrying out all these disciplines with ramrod posture and precision….well, look at my posture in the photo.  If I keep working on it, someday I will be able to play Scott Joplin like a real ragtime player. I’ve been practicing now for oh,  forty years or so.)  Let me know what disciplines you’re working on – and  your victories!

Laura’s disciplines:

  1.  Exercise – This is my daily job: half-hour floor exercises, especially core exercises (situps, planks) plus at least half-hour aerobics (walking, swimming, elliptical, stair climber, etc.)
  2. Try new stuff – I will examine when I hear myself saying “I can’t do that.”  Is that a rational judgment (sky diving) or should I give it a try (tango)?
  3. Commit to activities – If I’m going to try new stuff, I need to not just dabble but commit to get to at least a comfort level.  I need to maintain interest in existing activities (singing, skiing, piano playing) by consciously striving to get better.
  4. Gratitude – Be grateful every day..
  5. Maintain and grow relationships — Get out of myself and take an interest in others’ lives.  Be a support to friends, a contributor to the community.
  6. Get out of Parkinson’s –  No need to dwell on PD symptoms – there’s much more interesting things going on.
  7. Get into Parkinson’s – It takes a village to kill this disease.  My little contributions are to participate in research and write this blog at least once a month, and preferably, two or three times a month.
  8. Keep track of Parkinson’s — I am CEO of my body.  I need to partner with my medical team to observe and report symptoms.   I will try different strategies to manage symptoms. and  track results.

 

Posted in Parkinson's Basics, Parkinson's People, Status | Tagged | 4 Comments

Parkinsons and Melanomas

Why do I have a  photo of my late father in this blog?  I have a photo of my handsome, Irish father mostly because Father’s Day is coming up.   But we also share the same Irish face: pale white skin,  big rectangular forehead, magnificent white hair swept straight back (OK, I’m still waiting on the “magnificent white” part), and beautiful blue eyes that (due to extreme nearsightedness) retreat so far into the head that we have no visible eyelids.

It’s the eyelids that inspired this post.  Their retreating fold makes them particularly prone to dermatitis.  I finally had to go to a dermatologist to get the appropriate cortisone to cure this extremely delicate skin area.  While I was in her office, she gave me the full body skin check.  After a lifetime of sunscreen, hats, and long sleeves, I am happy to report that my skin was all A-OK.  Even the freckles you can see in my first grade photo are long gone.

And I thought I was done needing to check for melanomas.  Nope — she said to come back in a year.  Turns out Parkis have a much higher risk of melanomas than the general population.  Why?  Don’t know – “More research is needed”.  However, one clue is that dopamine (that’s the stuff Parkis are low on) is high in melanin — so much so that the area of the brain where dopamine hangs out is called the “Substantia Nigra”  (“Dark Substance” – melanin is what gives our skin its color).

A Chinese review of 24 statistical studies on PD and melanoma totaled an impressively large number of PD patients (292,275 patients).. The total odds ratio was 1.83, which means (simplistically) that PD patients are 83% more likely to get melanoma than the general population. This does NOT mean that PD causes melanoma or vice versa – the study only indicates that PD correlates with melanoma in a statistically significant way. Repeat “Correlation Does Not Equal Causation” ten times.

Oddly (to me, anyway), another study concludes that Parkis have a lower occurrence than the general population of getting cancer — except for two kinds: melanoma and prostrate cancer.  The authors conclude that the findings in this study strongly support the hypothesis of a common genetic link between PD and melanoma.

 One more complication: Sinemet, the “artificial dopamine” (levodopa-carbidopa) taken by many Parkis, may exacerbate melanomas. Its FDA prescribing information includes this warning: “Because levodopa may activate a malignant melanoma, SINEMET should not be used in patients with suspicious, undiagnosed skin lesions or a history of melanoma.”
So, lather on that sunscreen, wear a hat, and put on that long sleeved shirt — good advice whether or not you have Parkinson’s.

 

 

Posted in Parkinson's Basics, Parkinson's People, Parkinson's Research, Side Effects | Tagged , | Leave a comment

Tom Isaacs, RIP

TomIsaacs-regular

Tom Isaacs. Credit: Cure Parkinson’s Trust

I just got word from my Canadian buddy and fellow blogger Natasha McCarthy that Tom Isaacs had died unexpectedly on May 31 at age 49.  Natasha and I had both heard Tom speak at the World Parkinsons Conference in Portland in 2016; I’d heard him at some other venues.  All Parkinsons conferences feature inspirational speakers, but Tom was, gosh,  pretty dang inspirational.  And he was hilarious!

Let’s see:  Tom got a diagnosis of Young Onset Parkinsons at age 26 in 1994.  He decided to raise money for Parkinson’s research by walking the coast of his native England.   Hundreds of miles walked by a guy with a movement disorder.  Along the way, he met his future wife.

OK, pretty impressive already, right?  But wait, there’s more.  In 2005, Tom started a whole new organization, Cure Parkinson’s Trust, with the goal of finding — and funding — a cure for Parkinson’s.  In 2016, the organization raised 2.03 million pounds for research.  Take a look at their 2016 report on their website for some pretty gnarly exciting research.

This little clip gives just a hint of the humor with which Tom spoke.  It also shows his extreme dyskinesia (uncontrollable movement) — uncomfortable to watch, but you eventually shrugged it off because you realized he ignored it too.  We’ll miss your humor and leadership, Tom, but “our eyes are still on the prize”– finding a Parkinson’s cure.

 

 

Posted in Parkinson's People, Parkinson's Research, World Parkinson Congress | Tagged | 4 Comments