Bibbidi Bobbidi Boo

Cinderella-and-Fairy-Godmother-cinderella-40447446-500-313

“Bibbidi Bobbidi Boo”  –Cinderella’s Fairy Godmother

Bibbidi Bobbidi Boo, indeed.  This is what is going through my head right now.  I am imagining my  own  personal fairy godmother, who would have a cooler  outfit than the dowdy number that Disney saddled the old broad with.  My fairy godmother works for Big Pharma, so she could easily afford some nifty threads.

I am on the second day of a transition from a dopamine agonist (Ropinirole) to the heavier pharmaceutical ammo: carbidopa/levodopa.  The dopamine agonist makes what dopamine you have left work more efficiently.  After five years, I came to the conclusion that this was no longer sufficient.  My tremors are increasing, I have stooped-over posture that I have been battling for a year, and I am starting  to  “freeze’ .   The carbidopa/levodopa is what I call “fake dopamine” — it is actually a precursor to dopamine that  (unlike dopamine)  can pass through the brain-blood barrier.

Continue reading

Posted in Parkinson's Basics, Status | Tagged , , | 1 Comment

Downhill Journey

When the plane touched down in Seattle this past Tuesday, I instantly felt a wave of relief.  I was returning from the second of two downhill ski trips this season, and the relief was that I hadn’t broken anything – my body was still intact.

00002IMG_00002_BURST20180303143720

The latest ski trip -2018

This is not my usual reaction to downhill skiing, a sport I’ve enjoyed for over 30 years.  I’ve never been an ace skier, but I generally was able to handle (and enjoy) most blue (intermediate) runs and even the occasional black (expert).  Now I seem to be regressing to the bad habits of a beginner, and this year, found myself careening across the flank of a run, too fast and out of control.  For the first time I can remember, I was…..terrified.

Of course I took a lesson.  Lessons are never the miracle cure you hope they are going to be, but good instructors assess your form and give you some pointers.  I had a very sympathetic instructor who was helpful, but almost immediately after the lesson, fear took over and I regressed again to beginner-boo-boo form. Continue reading

Posted in Parkinson's Basics, Status | Tagged | 1 Comment

On the trail to a biomarker

brain with question markMy sharp-eyed brother sent me this link, asking “If they can do this, then perhaps a test for Parkinsons?”  The link described results of early research on a potential  biomarker for autism.   I was surprised at the parallels between Parkinson’s and autism.  Like Parkinson’s, autism can be difficult to diagnose since it presents in many different ways.  Like Parkinson’s, autism is no longer thought of as a single disease but a spectrum, and autism is more accurately called Autism Spectrum Disorder (ASD).  Like Parkinson’s, the cause(s) of autism is not clearly understood, but is not strictly genetic or environmental.  Like Parkinson’s, a damaged protein is suspected.  And  like Parkinson’s, there is no biomarker for autism, that is, an objective measure like (say) blood sugar for diabetes.

A consortium of European universities, led by the University of Warwick (GB) Medical School, used a combination of blood testing, urine testing, and artificial intelligence techniques to improve accuracy of autism diagnosis.  The researchers analyzed the blood and urine of 69 children—38 with ASD and 31 without—and found chemical differences between the two groups. They linked ASD with blood plasma protein damage, in which reactive oxygen species and sugar molecules spontaneously modify certain proteins.

The team used artificial intelligence techniques to develop predictive algorithms based on these results. One algorithm correctly predicted ASD cases with 90 percent accuracy. It also predicted when children did not have ASD with 87 percent accuracy.

“Our test is expected to improve the accuracy of ASD diagnosis from 60–70 percent currently achieved by experts in neurological disorders to approximately 90 percent accuracy,” Naila Rabbani, lead study author and a biologist at the University of Warwick in the U.K., said in a statement.

Blood and urine tests may also help shed light on the causes of ASD. “With further testing we may reveal specific plasma and urinary profiles or “fingerprints” of compounds with damaging modifications. This may help us improve the diagnosis of ASD and point the way to new causes of ASD,” Rabbani said.

The next steps will be to validate the test in further studies, and to see if it can identify ASD at very early stages. The children in this study were aged between five and 12 years  old.  Encouraging news for those who live with autism.  How relevant is this study to a Parkinson’s biomarker?  Here’s a significant difference:  The malformed protein (alpha- synuclein) that is suspected of causing Parkinson’s does not travel across the blood-brain barrier into the blood plasma – so no blood sample as a biomarker.  But let’s be hopeful – progress in one neurological disease  may turn the key in another neurological disease.

The full technical article is published in Molecular Autism.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

AMP up Parkinson’s Research

trump angryIt’s now about two hours before President Trump delivers his State of the Union address.  The pundits have already predicted he will brag about what a swell economy his policies have  brought about.  What I’m sure he won’t talk about is his administration’s attempts to gut medical research, specifically the NIH budget.

As of 1/3/18, depending on the outcome of negotiations between the Senate and House of Representatives, the 2018 budget for the NIH will be between $34 billion and $36 billion. Although that represents a $1 billion to $2 billion increase over the 2017 budget, and is significantly more than what the Trump administration has proposed, the funding trajectory over the last 25 years has been downward. Adjusted for inflation, in terms of purchasing power, the NIH budget is down 19.2 percent from 2003.

So it’s rich (you will pardon the expression) that today, the very day of the State of the Union address, the NIH has announced a $24 million project to AMP up Parkinson’s research.  AMP stands for Accelerating Medicines Partnership.   In a beautiful example of a public-private partnership, half the money comes from the private sector:  the Michael J. Fox Foundation and five pharmaceutical companies.   Just goes to show that the public and private sectors can work together, creating positive changes and more jobs — keep this in mind as Trump no doubt tonight will preach the Republican line about how cumbersome and job-killing government is.

From the Michael J. Fox Foundation (MJFF) website, here’s more about the project:

MJFF and the five industry partners are contributing a combined total of $12 million over five years to AMP PD. NIH’s National Institute of Neurological Disorders and Stroke (NINDS) will match those funds with an additional $12 million contribution.

The first phase of the project is an investigation of previously collected data and biosamples using state-of-the-art “omics” technologies (e.g., genomics, proteomics, metabolomics) to define the molecular fingerprint of Parkinson’s disease. Understanding the molecular differences in Parkinson’s can illuminate ways scientists may measure, track or treat the disease.

The partners initially will fund analysis of data and biosamples from (i) the MJFF-led Parkinson’s Progression Markers Initiative; (ii) the NINDS Parkinson’s Disease Biomarker Program; (iii) BioFIND, funded by MJFF and NINDS; and (iv) the Harvard Biomarkers Study.

Posted in Parkinson's Research | 2 Comments

It takes a village to cure Parkinson’s

Alzheimer, Lewy clinic 1909, cropped

Let’s do a little brain test.   Before reading anything else in this post, look carefully at the above photo.  What do you notice about it?  What appears odd or unusual?  When and where was it taken?  Does it look familiar?

Alzheimer, Lewy clinic 1909 w caption

Here is the full photo.  Yes, the photo should look somewhat familiar because I used it in my previous post about dementia.  I was first intrigued by the photo because it was labeled “Lewy family” even though it was clearly a work group in a scientific laboratory.  What were those two women doing in a lab in ….1910?  And what was the story on the Marx Brothers in the front row? — three guys who look so Italian they might suddenly burst into “O Sole Mio”.  Once I found this version with names, I wondered about that non-German name of the guy  standing to the right of Alzheimer.  And this must be some prestigious lab if not one but two famous names (Alzheimer and Lewy) worked there.

Let’s find out some more about the people in this photo.

What about that guy with the non-German name, Nicolas Achucarro?  He was from Bilbao, but he was not Spanish.  He explains the odd press release I just reviewed — odd not because of its content, but its source. When I clicked to the research institution, the website was in….Euskara.  If you don’t recognize this language, neither did I.  The research institute turns out to be the Achucarro Basque Center for Neuroscience.  , named after Achucarro, the first Basque neuroscientist.  He died in 1918, only 38, a death not related to WWI, but instead Hodgkin’s Disease.

Adele Grombach is the woman over to the left.  She worked as Alzheimer’s technical assistant and introduced co-workers and guests to neurohistologic techniques.  Someone had to prepare all those lab samples of brain tissue to view under the microscope.  Unfortunately, the woman in the middle is unidentified, but I find it amazing that there were not one but two women working in this lab — and that Grotman worked there until the end of World War II.

This photo turns out to document quite an international lab.  Yes, the three Marx Brothers in the front row were indeed visiting physicians from Italy.   Fritz Lotmar was from Switzerland.  Stefan Rosental was from Poland.  They all assisted Alzheimer in the autopsies in which he discovered the cerebral plaques that characterizes Alzheimer’s Disease.

There are several lessons from this historical excursion:
–Yes, it takes a village – a very international village — to research a disease – and find a cure.
–We can’t afford to cut off any country or group from that village.  America’s president just used a vulgarity to disparage a whole continent (Africa), yet I just read an article headlined “African immigrants among most educated entering US“.
–We can’t allow Trump and his supporters to let their hatred drag down America from its leading role in research.  Look at what happened to Germany:  In 1910, scientists like Achucarro taught themselves German so they could participate in the latest research — today that language would be English (at least for now).  Frederic Lewy was not the only  Jew who had to flee persecution from 1930s Germany.  How much brain trust did Germany lose because of the Nazis’ hatred?  How long did it take the country to rebuild that brain trust?
–We must continue to encourage women to enter and thrive in the sciences – the Adele Grombachs of the future.   I just read the obituary of Ben Barres, not only a researcher of neurodegenerative diseases, but also a defender of women in the sciences: Barres had the unique perspective of a transgender, transitioning from a woman to a man in 1997.  He wrote “…People who  don’t know I am transgendered treat me with much more respect: I can even complete a whole sentence without being interrupted by a man.”
–We can’t rely on one approach, one lab, or one scientist.  Alois Alzheimer joined this lab at the Royal Psychiatric Hospital in Munich in 1903.  By 1912, he had left the lab for another professorship, and by 1915, he was dead at 51.  Why?  He never recovered from the strep infection he caught on the train to his new job.  Penicillin wouldn’t be discovered until 1920.

 

 

 

 

 

 

 

 

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

Which dementia do you prefer?

crown royal bagTasteless joke of the day: An old man was asked, “At your ripe age, what you prefer to get – Parkinson’s or Alzheimer’s?” The wise one answered, “Definitely Parkinson’s. Better to spill half an ounce of Crown Royal whiskey, than to forget where you keep the bottle!” …

Somewhere along the line, I picked up that Parkis are less likely to get Alzheimer’s than the general population.  However, I have been unable to confirm this with my research assistants, Dr. Google and Dr. Internet, so perhaps this is just a happy fantasy.  The bad news is that  Parkis are likely to get their very special brand of dementia (Parkinson’s dementia).  The Alzheimer’s Association has this cheerful prediction on its website: “An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.”  (Whoa, I like the alternative site where the risk is only 20%.)

And then there’s a third kind of dementia called Lewy Body Dementia (LBD).

lewy-bodies-with-tag

How can such a pretty little oval cause so much trouble?

Both Parkinson’s Disease and LBD involve nasty misfolded proteins called Lewy Bodies.  The clinical distinction between Parkinson’s disease dementia and Lewy body dementia is made using the “one-year rule.” Patients who have Parkinson’s disease with motor problems for one year or more before developing dementia are classified as with Parkinson’s disease dementia. Those who have cognitive impairments within one year of the onset of motor difficulties or before the onset of motor problems are diagnosed with Lewy body dementia.

lewy_family and alzheimer

Dr. Frederick Lewy, standing right, and Dr. Alois Alzheimer, third from right. 1909-10, Nervenklinik, Munich

I recently visited the Seattle Veterans’ Hospital for a research project to  better diagnose and treat Lewy Body Dementia.

We tend to think of dementia and Alzheimer’s as synonymous, but there are different types of dementia and they impact different types of brain function.  Alzheimer’s is classically associated with loss of memory, especially short-term.  Parkinson’s dementia tends to impact  memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task (“executive function”).  Lewy Body dementia has many symptoms such as confusion and acting out dreams, but is perhaps best known for visual hallucinations.

I went through about three hours of blood tests, cognitive testing and medical history to tease out what kind of (ahem) mild cognitive impairment I display.  I can’t tell you the specifics of the cognitive testing, but in general, most of them involved some sort of memory test.  I also can’t tell you how well I did, because they wouldn’t tell me.  The rationale I’ve received is that the results only are meaningful when analyzed for a group. (I love word games and would like to think I did very well!)

Although the study is titled “LBD Biomarkers Study”, the only potential biomarker was the blood I  donated.  (A biomarker is a  objective measure (like blood sugar for diabetes) to diagnose a disease and measure its severity.  Lewy Bodies themselves are biomarkers for LBD and PD — the catch is you have to be dead – they only show up during an autopsy.)   So diagnosis of both LBD and PD remains clinical (by observation).  Having more information about impairments of specific kinds of cognition hopefully will help better diagnose LBD and result in a more targeted treatment.

 

 

Posted in Parkinson's Basics, Parkinson's Causes, Parkinson's Research | Tagged , , , , , | 1 Comment

Feldenkrais – Fulfilling or Fooey?

Jane Brody, veteran health journalist for the New York Times, is hardly a fluttering reporter swooning over the latest health fad.  But she waxed poetic in describing her body after a couple Feldenkrais sessions:  “I felt like I was walking on air.”

20170711_145530

July, 2017- This is the picture that caused me to get help correcting my posture. I had no idea I was standing at a slant.

Feldenkrais is one of those mind-body techniques like yoga to  make you be more aware of how you’re carrying your body, then learn ways to move more efficiently with less stress.  The basis of Feldenkrais is neuroplasticity: the brain can learn new ways to move the body — old brain, new tricks.

My current trainer is a certified Feldenkrais practitioner. (Yikes, certification requires three and a half years of training).  Not surprisingly, she incorporates Feldenkrais techniques and philosophy in her sessions.  Unfortunately for me, part of the philosophy is that there is no “right” way to move:  Feldenkrais teachers do not give formulas for a proper way of behaving; rather, they rely on their patients’ ability to self-discover and self-correct.   I frankly find this balderdash — In a precious, expensive hour’s session, I do not have time (nor knowledge) to  “self-discover” and “self-correct” — I just need to be told the right way to stand. Continue reading

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

Stem Cells – The hope and the hype

What “miracle drugs” were in the 20th century, stem cells are the equivalent for the 21st century — the penicillin, the polio vaccine that will solve all our health issues.

Hmm….sounds too good to be true.   IMG_20171130_142004Exhibit A in the hype category is this newspaper ad (two full pages wrapped around the front page of the Seattle Times), touting “regenerative medicine” from stem cells as the cure for neck, knee, and back pain.  (Conveniently, these pains affect a large portion of the public.)  Note to self: do not make medical decisions based on large newspaper ads.  Suspiciously, there is no website on the ad, and nothing comes up on a Google search of “Stem Cell Health Centers”.   I did however find a news story  from August, 2017: “The Food and Drug Administration is cracking down on “unscrupulous” clinics selling unproven and potentially dangerous treatments involving stem cells.”

Continue reading

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

Urgent- Help me fight Parkinson’s- TODAY

michael-j-fox-cropHey friends — Today, November 28, 2017, is Giving Tuesday – a balance to all the overeating and overbuying of Thanksgiving.  Help me fight Parkinson’s by donating to the Michael J. Fox Foundation.  I personally believe they are the most effective organization in raising money and directing it efficiently to research for a Parkinson’s cure.

AND YOUR DONATION WILL BE MATCHED!  Click here to donate to MJFF.

Michael J. Fox Foundation has set a big goal: raise $1 million in one day to accelerate better treatments and a cure for Parkinson’s. Any donation made to the Foundation on Giving Tuesday will be matched, up to $1 million. And we promise to put your gift to work quickly and efficiently: 89 cents of every dollar spent at MJFF goes directly to our high-impact programs to accelerate a cure.

Click here for  the link to Michael J. Fox Foundation.  Gotta love an organization whose purpose is to go out of business – let’s find the cure!

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

All Downhill From Here

IMG_4535

Cross country, way back in 2013

The ancient Subaru station wagon is packed with so much snow gear that it looks like a traveling REI store.  We are driving tomorrow to British Columbia (Silver Star near Vernon for you ski bums) for a Thanksgiving of eating and skiing.

Just writing that last sentence reminds me of how much I have to be grateful for.  But….just as the phrase “All downhill from here” can have a positive or negative meaning, I have been trying to bat off negative thoughts with positive energy.

One negative:  Am I still going to be able to ski?  My calves and thighs continue to be perennially tight, and I am imagining grimacing with pain as I bend my knee and kick off in the cross country track.  I am duly doing my exercises prescribed by my trainer, but they seem to do no good at all.

And that is at the heart of the negativity:  exercise is critical to fighting PD,  but whatever I do, it seems time consuming and useless.  Of course the exercise will literally always be pointless if I have no “point” to aim for.  I confess that I’m leery of setting exercise goals because….then you have to achieve them.

Laura and Paul-Brot Trot-1001170

Paul and Laura at Brot Trot 5k

What about a 5k as a goal?   I signed up for a local 5k (mostly because my husband had signed up) and didn’t embarrass myself too much.  I almost felt proud of myself until the trainer asked if I felt out of breath at the end.   Well, no, of course not – that’s because I walked more than half of it.   The remark made me feel like I was wasting my time.  So now the goal is to actually run a whole 5k.  However, the longest I’ve been able to “run” (“run” is a very slow jog where I look like the Bride of Frankenstein)  has been 1.1 miles.  A 5k is about 3.1 miles, and that additional 2 miles seems to me as achievable as running to Australia – especially since, the more times I run this course, I run less mileage, not more.

Bride_Frankenstein_1935_21-1487460005-726x388

Elsa Lanchester and Boris Karloff, “Bride of Frankenstein”, 1935.  Love her hair!

So where is the positive energy?  I am allowing my whining about exercise to create way too much negative noise.  Let’s turn down this negative volume and change the channel to  gratitude, this being the season of Thanksgiving.  What are some things I am grateful for?

–I can afford to hire a personal trainer and experiment with this approach.
–I have the opportunity to travel to a gorgeous part of British Columbia.
–My husband (aka my Chauffeur For Life) is doing all the driving, including through snow and gnarly mountain passes.
–I am going to a ski area that has all the snow sports that I love: downhill skiing, cross-country skiing, and snowshoeing.
–I will be participating in a Thanksgiving dinner with lots of my favorites, notably cranberry sauce, mashed potatoes, pumpkin pie, and (just throw the turkey away) STUFFING!

 

 

Posted in Status | Leave a comment