“Three Pounds of Goo”

00004IMG_00004_BURST20171012135334_COVER

Even the candy jar at the Neurosciences Institute looks like….hmm..think!…

“Everything that we can perceive and understand..happens with this three pounds of goo”.

Bill Newsome isn’t stuffy about his favorite subject, the human brain.  Professor William Newsome, Ph.D is the director of  Stanford Neurosciences Institute and graciously met with me on October 12, 2017 to talk about neurosciences research at Stanford.

The Institute incorporates organizational principles discovered through Stanford Bio-X, an interdisciplinary approach to biological sciences started in 1998.  The image of the lone scientist in the lab shouting “Eureka” is way outmoded.  (For starters, I don’t think anyone says “Eureka” anymore.)  Stanford, the inspiration for Silicon Valley,  has applied the same interdisciplinary strategy to research; this  pioneering approach has resulted in a strong model for innovation.  Stanford Bio-X has fostered more than 500 interdisciplinary faculty teams, resulting in not just exciting science, but also more than 30 patent filings and (of course) numerous startup companies. 

IMG_20171012_135917

Dr. Bill Newsome

Dr. Newsome freely admitted that when Stanford Bio-X and its interdisciplinary strategy was first proposed in the late 90s, “I was pretty skeptical– it seemed like a radical, almost foolish idea. You had scientists coming from different departments with different tools, vocabulary, conceptual frameworks.” But today, Dr. Newsome is enthusiastic about the “social experiment” of interactions, especially among students and postdocs– “this is where the ideas come from!”  He noted that the Clark Center (HQ for Bio-X) had a “minimum of walls” – literally  and figuratively — and added about the ferment of ideas this has fostered: “It’s really fun!”

Interestingly, when I asked Dr. Newsome what his biggest challenge was, it was continuing this collaborative culture change. He said, there is “creative tension” between the traditional departments whose mission is to maintain rigorous disciplinary integrity and recognized excellence within the discipline and on the other hand, the Institute whose mission is to see new possibilities by getting out of the disciplinary comfort zone.

A sampling of current Parkinson’s research at Stanford is in a separate post.  Dr. Newsome confirmed that the Institute’s research focus is more on basic science and tools to examine the brain, rather than clinical trials.  He used a traffic engineering analogy (more of that interdisciplinary approach!) to explain the areas of research:
–Mapping the brain circuits (the route map), e.g., making mouse brain transparent to have a 3-D view of circuit pathways
–Signal dynamics (what is the traffic like on the map), e.g., using a larval zebra fish with transparent skin so you can see the signal pulse through a live brain
–Signal manipulation (if I put in a new stoplight, what happens to traffic), e.g., controlling specific neural circuits with light (optogenetics) –and recording neural activity with a tiny camera in the mouse’s skull!
–Unifying theory (still working on a unifying theory to tie together neural research data)

The Institute has many research projects underway, both exploratory starter projects (“seed grants”) and, well, “Big Ideas”.  Since Parkinson’s may have a connection with the brain aging process, I’m excited to learn that one of the “Big Idea” projects is “brain rejuvenation”.   The Institute categorizes its projects in these groups:
–NeuroDiscovery: Probing the inner workings of the brain
–NeuroHealth: Keeping our minds strong, rebuilding what’s been lost
–NeuroEngineering: New tools to probe and connect with our minds

Exciting?  You bet.  Expensive?  Yep – even one of those seed grants is around $200k. While the majority of funding nationwide for scientific/medical research comes from the federal government, the challenge is that fed spending has been flat for a decade.   Dr. Newsome noted that this shrinking federal budget incentivizes researchers and funding agencies go with the  “sure thing” – research far enough along to show favorable results, carried out by older, more established scientists. It’s the philanthropic dollars that fund the “first million” and help with younger scientists and out of the box thinking, said Dr. Newsome.

Hmmm….do I hear my checkbook quivering?

 

Posted in Parkinson's People, Parkinson's Research | Tagged | 1 Comment

“All Right Now”

Stanfordmealcard

Proof that I was at Stanford (Would never be admitted today.)

“All Right Now” is the de facto fight song of my alma mater, Stanford University.  It’s also the title of the Class Panel that we grizzled old alumni held during our class reunion.  The theme was that life had thrown us some curve balls but we had responded with grace and resilience and we are  “All Right Now”.  The “curve balls” included everything from breast cancer to suddenly losing a spouse. I was humbled to be among such inspiring speakers and thrilled to get so many compliments from my classmates.

IMG_20171013_130448~2

Laura with her fellow panelists.

Here are some excerpts from my panel participation, which was a Q&A format:

How did you react to the news that you have a chronic disease?

I really, really hoped the doctor was wrong!

I even wrote a blog post about a year after the  diagnosis revealing that I harbored a faint (irrational) hope that the doctor would say, “Nah, we were just kidding about the Parkinson’s.  You actually have a disease called…um.. ….”Zatzsiosis”, but it’s nothing to worry about.”

My actual reaction? I almost burst into tears.  But it wasn’t because a neurologist said I had a regressive movement disorder.  No, it was because the doc said the only thing I could do for the Parkinson’s was exercise at least a hour a day.

I hate exercise.  And I had no time for exercise.  So I retired.

Do you miss work?

Gosh, do you have to ask me that question?  🙂

No, I’m busy doing things I like to do.  I travel, I sing in a community chorus, I dabble in swing dancing, I explore the beautiful Northwest, and of course there’s always the blog, which helps keep my mind exercised.  I consider exercise my “job” so once I do my exercise “job” each day then I can go on to the fun stuff.

How do you keep a positive attitude?

The irony about Parkinson’s is that it depletes the very brain chemical, dopamine, that makes people happy and optimistic. So not only do I have to stay optimistic, but I have to try even harder than other people. “If you’re happy and you know it, you have dopamine!”

Michael J. Fox, kind of the poster child for Parkinson’s, wrote a book titled Lucky Man.  I can understand this title.  In some ways, I think of the Parkinson’s diagnosis as a stroke of good fortune:
–I retired earlier than I probably would have.
–It’s kinda fun to be a “reporter” again.  I’ve learned a little about Parkinson’s Disease, but a lot about writing a blog.
–We moved from a 2-story house in Seattle with a circular staircase to a one-story Rambler in a Seattle  suburb.  We did this so we could better age in place, but we got many unexpected bonuses, chief among them, a lot of new friends.

Why did you start the blog?

I think the blog I started helps my attitude.  The blog is called “The Magic Trick – Life with Parkinson’s”  because one day I woke up and “as if by magic” my hand was tremoring.  After the diagnosis, I wanted to find out more about Parkinson’s, and I thought writing would be a good way to organize the bits of knowledge I was acquiring.  I also thought I would be tremendously trendy and unique to start a blog — Ha Ha.

But I did get to be an Official Blogger for the World Parkinson’s Congress last year, this is a big deal conference held every three years.  I really enjoyed meeting other bloggers and other Parkies from all over the world.   And I’ve met all sorts of interesting people who happen to have Parkinson’s who I have written about in the blog.  This includes people with some unexpected jobs like sculptor and commercial airline pilot.  So the blog is fun and keeps my brain active.

How does your experience apply to the rest of us?

Chances are, everyone in this room — everyone in our class — will either get a chronic disease or have a loved one with a chronic disease.  Very few of us will die in a glamorous way:  shot by a jealous husband or crashing our Tesla at the Grand Prix.

So, we’ll probably need to deal with some chronic condition that could go on for  20, 30, even 40 years. I believe attitude is key.  You may go through those classic stages of grief – you know, denial, anger, bargaining, depression – but eventually, most folks end up at acceptance.   I decided to “cut out the middleman” and go right to Acceptance.  Acceptance isn’t the same as submission – you still want to have a fighting attitude — I think of it as “constructive optimism” — somewhere between Pollyanna and a Ninja warrior.

What lessons can you share?

A very important lesson:  Be nice to your husband.  I think Paul is still sort of in denial about my Parkinson’s, or more accurately, keeping himself in reserve for when I really, really need a “care partner”.  In the meantime, I’m practicing (and failing) at not critiquing his driving.

Another lesson – very difficult for Stanford alumni, at least this Stanford alumni – is to have some humility.  You cannot handle a chronic condition by yourself.   You need to assemble a team.  I am currently working with a fitness trainer and recently spent a full hour of her expensive time….walking…yes, I’m learning to walk.  This winter I’ll probably be working with a speech therapist on…breathing…And if I get that figured out, then I get to move on to….talking…

I believe that part of humility is being open to where your team, your inspirations may be.  One of my inspirations is a young woman at my gym whom I call Esperanza in my blog.  Esperanza has very severe Downs Syndrome – I don’t think she can even talk- but she spends hours at the gym.  I may have the fancy Stanford degree, but Esperanza does a great Zoomba.

YouTube Extra:  Leland Stanford Junior Marching Band plays “All Right Now”!  This ain’t your mama’s marching band – see if you can listen to it without jumping out of your chair and dancing around the room!

Posted in Parkinson's Basics, Parkinson's People, Status | Tagged | 3 Comments

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 , , , | 1 Comment

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