When I started this blog in 2012, I thought I was so unique and trendy. I quickly found out there were many, many Parkie bloggers, who have all added to my awareness about the many faces of Parkinson’s. Recently I’ve had the pleasure of “meeting” (cyber-meeting anyway) a couple new (to me) PD bloggers.
One is Sue Rosier at https://silverliningsandparkinsons.home.blog/. She quoted from Continue reading
Ronald Reagan as George Gipp (“The Gipper”)
I never read the sports pages. What, never? Well, hardly ever….An article in the New York Times sports page did catch my eye because it was about CTE. CTE stands for chronic traumatic encephalopathy, or what happens when your head gets repeatedly bashed on the football field.
CTE is so pervasive among professional football players that a neuropathologist examined the brains of 111 NFL players and found CTE in….110. All of these players were deceased, because that’s the only way you can conclusively confirm a diagnosis of CTE. Same goes for Alzheimer’s and Parkinson’s.
All three of these neurological diseases are characterized by clumps of runaway proteins clogging up the brain: tau for CTE and Alzheimer’s, and alpha-synuclein for Parkinson’s. These clumps can’t be seen until the patient is dead. The clumps are what Dr. Alois Alzheimer saw, way back in his lab in Munich in 1906. Finding a biomarker that can accurately diagnose these diseases in a living patient is the Holy Grail of neurological research.
So that’s what caught my eye about this article. The researchers used positron emission tomography (PET) scans on living patients and found “elevated amounts of abnormal tau protein”. However, the authors of the study and outside experts stressed that this tau imaging is far from a diagnostic test for CTE, which is “likely years away”.
Another intriguing thing in this article is a term that is new to me: “ligand“. Ligand is a molecule that binds to proteins (in this case, tau), making them easier to see in a PET scan. The Wikipedia entry helpfully says, “Radioligands are radioisotope labeled compounds used in vivo as tracers in PET studies…” A company called Avid Radiopharmaceuticals has successfully developed a ligand for tau and participated in (and partially funded) this study.
And….how exciting!….Avid is also working on a ligand for detecting Parkinson’s: 18F-AV-133. (Catchy name- guess it’s too early for the marketing department to get involved.) I found a clinical trial on this ligand listed in an NIH database which indicated the trial started 2012 and ended 2016….but I have been unable to find the results. I did find that AV-133 (the “18F” seems to have been dropped) is part of a mammoth study searching for that biomarker Holy Grail, Parkinson’s Progression Markers Initiative, funded by the Michael J. Fox Foundation. More about PPMI in a future blog.
YouTube extra! “What Never? No Never! What Never? Well, hardly ever” from Gilbert and Sullivan’s HMS Pinafore.
Proof that I played at Carnegie Hall. (OK, I’m goofing off in the rehearsal room.)
How do you get to Carnegie Hall? No, the answer to the old joke is not “Practice, practice, practice.” The answer does involve practice (a lot), but also money, “just do it”, and Bill Gates.
Let me explain. Last summer, the community chorus I am affiliated with got an invitation from a local music director to join his chorus at Carnegie Hall. I know — everyone (including me) has the impression that there must be an elaborate multi-level audition process to reach the lofty heights of Carnegie Hall. I’m sure there is for most Carnegie concerts, but in this case, the main entrance requirement is writing checks to the impressario company which organizes these concerts.
The amount of the checks was breathtaking enough that I had a considerable inner dialogue between Ms. Spendthrift and Ms. Thrift. I also had just a couple days to decide. Continue reading
We Parkies are always being urged to go to a Movement Disorder Specialist. Why? And what is a Movement Disorder Specialist, anyway? Well, Movement Disorder Specialists are neurologists with 1-2 more years of training specifically on Parkinson’s and other movement disorders. This is a whole lot of schooling: After med school, first, you do the neurology residency which is usually a year of internships, one year of internal medicine, and three years of neurology. Then there are 1-2 year fellowships, focusing on movement disorders which may be clinical, research, or both.
This further specialization on top of the neurological specialty makes sense – Parkinson’s is tricky to diagnose and treat, so a clinician who sees Parkies all the time should have the experience to better target diagnosis and treatment. For instance, doctors with this specialized training are typically more likely to correctly distinguish between essential tremors and Parkinson’s. Many Movement Disorder Specialists also have the training to do Deep Brain Stimulation neurosurgery – not a surgery for a rookie!
Neurologists already have their hands full with a long list of brain ailments: Alzhemer’s and other forms of dementia, autism, cranial injuries, epilepsy, multiple sclerosis, migraines, etc., etc. And the list of movement disorders that might be handled by a specialist goes beyond Parkinson’s: for instance, dystonia and dyskinesia (uncontrolled muscle spasms), Huntingdon’s chorea (the horrible neurodegenerative disease charcterized by tics that Woody Guthrie died from), ataxia (uncoordinated movement), essential tremors, and Tourette’s syndrome (facial and vocal tics). In a distinction that only a medical journal could love, epileptic seizures are considered distinct from movement disorders, although the journal article helpfully says: “(some) movement disorders look like seizures and (some) seizures look like movement disorders.”
I am happy to report that I have gone to a Movement Disorder Specialist since my diagnosis back in 2012. He is both experienced and empathetic, so good that I’m not telling you his name, not just to protect his privacy but to keep from adding to his heavy patient load! Thanks, Doc.
How many weasel words can you count in this headline?
“New treatment offers potentially promising results for the possibility of slowing, stopping, or even reversing Parkinson’s disease”
This sort of hopeful (but guarded) headline is typical of science journalism about The Cure for Parkinson’s or other incurable (at least for now!) diseases. I see headlines like this so frequently that I don’t even read the articles anymore.
This article dated 2/27/19 was a little different: first of all, the Cure Du Jour sounded current and not too wacky: “naturally-occurring growth factor, Glial Cell Line Derived Neurotrophic Factor (GDNF)”. “Naturally occurring” always sounds good, and “cell line derived” (that is, from stem cells) is hot these days. Second, the hypothesis being tested Continue reading
Time for updates on several previous posts:
David Leventhal, National Director of Dance for PD
Dance for Parkinson’s — David Leventhal, national director for this program created by Mark Morris Dance Company, recently came to Seattle to help celebrate the 10th anniversary of the program in this area. I decided to participate, although I have to confess I was mainly attracted by the free lunch. When I took a course back in 2015, it didn’t appeal to me — for starters, everyone had Parkinson’s. My reaction was the same after this current sampling. I don’t follow choreographed routines very well. But I recognize that dance is a great neurological exercise to coordinate brain and body. Swing dance has been a more fun alternative for me.
Bride of Frankenstein — As you can see by the photo of me with David Leventhal, I’m still struggling with posture. I returned in November 2018 to the personal trainer I had worked with over several months in 2017. In February of this year, I decided to struggle on my own for a while, so I can be more focused when I return to the trainer. Still struggling. (However, my back generally feels pretty good.)
PANUC longitudinal study — This last Wednesday I made my fourth trip ( See posts re first, second , third trips) to the Seattle Veteran’s Hospital to participate in this study tracking my Parkinson’s symptoms over time. (PANUC is the former name of Pacific Udall Center, a Parkinson’s research center.) Takes me all morning as it includes a blood draw (they are looking for the presence of gene mutations related to Parkies), a lengthy clinical exam by a neurologist (yep, the castanet tests and the full deal), a gait review (with me wired up as I walk down the hall), and almost two hours of cognitive testing. I think the hardest test was being shown a sheet of 6 abstract symbols for 10 seconds or so, then drawing them from memory. I’m supposed to go in every two years, so I couldn’t believe it was already my fourth round: it’s sobering to realize I was diagnosed 7 years ago. Parkies, they always need more research volunteers.
Donate your brain for neurological research — A post I wrote back in 2017 about donating your brain for neurological research has an outdated contact. Call the phone number on Pacific Udall Center’s website for current contact and information. OK, brain autopsies sounds pretty icky, but this is important for research – and only you can do it . You do need to participate in the PANUC longitudinal study to be eligible for the autopsy program.
How many neurologists are in the West Indies?
This sounds like the opening line of a gag (and no, I have no idea how many neurologists are needed to change a light bulb). But I have been seriously wondering about neurologist resources after a trip to the Caribbean. I was stunned at the fragility of the infrastructure, of which one part is the medical infrastructure. From the Bahamas down to Curacao, there live more than 44 million people, three times as many as the Pacific NW (WA, OR, ID, MT, AK) . You have to assume among the Caribbean population are people afflicted with Parkinson’s, Alzheimer’s, epilepsy, multiple sclerosis, cranial injuries, and all the myriad brain ailments neurologists treat.
Damage is still evident to the islands from back-to-back hurricanes (Irma and Marie) in September 2017. But this is a part of the world that had a fragile infrastructure even before the hurricanes. For starters: Water. I was reminded of why castaways are always landing on “desert” islands. Desert can mean “deserted” but in the West Indies desert means “dry”. I had this romantic jungle-y “Pirates of the Caribbean” image in my mind, and was surprised to find how dry and scrubby the islands were – cactus everywhere! Turns out the West Indies is a hotbed (pardon the pun) of desalination plants (such as the one pictured in St. Martin).. I can vouch the water tastes fine. But this is a far more power-intensive way to get your water than from the heavens.
Further challenging the environment in the Caribbean is the legacy of sugar cane. 18th century Europeans had no concept of soil management or crop rotation and quickly depleted what little nutrients the volcanic soil held. They also chopped down the tropical hardwoods (think mahogany) to use for all those wooden sailing ships. So, between the lack of water and the poor soil, not a promising agricultural location: I saw one small commercial garden, no farms, not even backyard gardens. This is despite the fact that nearly all food must be shipped in. All the food on the cruise I was on came from Miami.
I was surprised to learn that sugar cane has not been grown on an economic basis since the 1840s. Why? Most countries emancipated slaves in the 1840s – without slaves, the sugar cane no longer made economic sense. So with no cash crop, no agriculture, no industry, what is the Caribbean economy based on? What pays for the infrastructure? The obvious answer is tourism — but keep in mind most tourists arrive by cruise ship – so their hotel and (most) restaurant dollars are…on the ship. We stayed a number of nights in St. Martin, and finding dinner was a challenge. Most restaurants closed at night after the cruise ship passengers were back on board.
Another challenge to establishing and maintaining infrastructure is government — both too much and too little. There is no “Union of West Indies”. Instead, there are more than 7,000 individual islands in an approximately 1-million-square-mile region. There are 13 sovereign island nations and 12 dependent territories, The tiny island of Sint Maarten/St. Martin where we stayed (pre-hurricane population of about 77,000) had the absurd comic opera situation of half the island being Dutch and half being French. Since 2010, the Dutch part has almost full autonomy from the Netherlands while the French part remains an “overseas collective” of France. How do you coordinate rebuilding infrastructure with a governmental structure(s) like this?
And at least one speech therapist in St. Barth.
So back to the original question: How many neurologists are there in the West Indies? Answer: No idea. Some Google searching found neurologists in Barbados, Jamaica, Puerto Rico (even a Puerto Rico Academy of Neurology!) including a Puerto Rico VA hospital. But it’s a safe bet that there’s not very many – not enough neurologists to serve 44 million people.
Although the mid-term elections are over, I received a political flyer recently. The flyer was full of photos of worried senior citizens with the scary headline shown above. OK, you have my attention – what’s this all about?
The inevitable worried senior shot.
I read the flyer carefully, but I couldn’t figure out what the alarm was about. However, my sniff-o-meter was going off. Here’s some language from the flyer, see what you start to suspect:
-“Middlemen and HHS bureaucrats will interfere with doctors’ decisions about your health care.”
–“Use of “Step Therapy” or “Fail First” policies will deny patients immediate access to the most effective treatment for their illness.”
–“Unprecedented price fixing for medicine based on deeply flawed European health systems, stifling America’s leadership in cancer research and innovation.”
Do you have the same suspicion I did? Another hint: The flyer is “Paid for by Alliance for Patient Access” (AfPA). Chances are, when the advocacy organization has a vague, almost-sounds-like-grass-roots name, it’s a corporate lobby. Yup, the flyer was paid for by Big Pharma.
I looked up “Alliance for Patient Access” and came across an excellent piece of reporting by Mary Chris Jaklevic in the Health News Report. She characterized AfPA as an “organization (which) consistently opposes measures to rein ….in…skyrocketing prescription drug costs..”, adding, “rarely are its deep pharmaceutical connections called out.” AfPA is financially supported by nearly 30 pharmaceutical companies.
I looked up “Step Therapy” and it is indeed what I suspected: As of January 1, 2019, Medicare Advantage insurance plans have the option of requiring patients to start with a less expensive drug for their condition before they can move up a “step” to a more expensive drug. In return, these insurance plans are required to pass on savings to beneficiaries (that’s us). Note step therapy is an option, not a requirement for Medicare Advantage plans. Incredibly to me, until this year, Medicare regulations prohibited step therapy ; also, prior authorization by the insurance company was discouraged until this year. These both strike me as prudent ways to control drug costs.
So what does Trump have to do with these Medicare changes? He is actually trying to honor a campaign promise to lower drug prices and the above regulatory changes are part of that mission. Much to my astonishment, he signed on 10/11/18 what sounds like a progressive piece of legislation — two actually, the awkwardly named Know the Lowest Price Act and the Patients’ Right to Know Drug Prices Act. These acts do away with pharmacy “gag” clauses — pharmacy benefits managers contracted by insurance companies sometimes use “gag” clauses to prevent pharmacists from informing patients if a prescription would be cheaper if purchased out-of-pocket rather than through their health insurance plan.
On October 25, 2018, Trump unveiled a plan to overhaul how Medicare pays for certain drugs. The plan includes expanding the drug price negotiation already in place for Medicare Part D (outpatient drugs) to Medicare Part B (inpatient drugs), and benchmarking US drug prices against prices in foreign countries. Trump said, “For decades, other countries have rigged the system so American patients are charged much more …for the exact same drug,” As usual, Trump has it backwards: other countries aren’t “rigging the system” – they have systems to control drug prices. Americans have no system. Because Big Pharma has lobbied against price controls in the lucrative US market, Americans are charged much more.
Two caveats for this blogpost: 1) Medicare is a complicated subject and I’m not a professional reporter; take this content with a grain of salt, and follow the links for more information.
2) It’s easy to protest against price, um, “protection” by Big Pharma, but at the same time, I have to be nice to them — improvements in Parkinson’s drugs largely come from these companies.
YouTube extra — A post on Medicare needs to be balanced with some levity from the only doctor I want to see: “Hello Central, give me Doctor Jazz!”
In the category of “Be careful what you wish for” is the Canadian medical system. We Yanks cast envious glances at our friends across the border with their affordable health care. But there’s always a catch – specialized therapies can be as limited by bureaucracy in Canada as they are by cost in the US. I have been following the slow progress of my fellow Parkinson’s blogger, Natasha McCarthy, to obtain approval for Deep Brain Stimulation. She lives in Prince Edward Island and has gone through several hurdles to get approval for DBS. I think she’s up to some 18 months now, and her journey is further slowed by living in the rural Canadian Maritimes with limited access to specialized medical resources. In contrast, a friend here in Seattle got DBS surgery a couple months after she decided to go for it and had her choice of 3-4 hospitals to evaluate.
The latest hurdle Natasha went through (right before Christmas) is something called “DaTscan”. I’ll quote from her Facebook entries:
12/20/18: “…to get approved for Deep Brain Stimulation. DaTscan at 7:45am tomorrow! This scan’s never been done in Atlantic Canada for this purpose before. go figure. I’m the first due to my ‘young’ age..” [Natasha has early onset PD and is in her early 40s.]
I wasn’t familiar with “DaTscan” so I turned to my research assistant, Dr. Google. Turns out to be a radiological test (like, say, PET scans or MRIs) approved by FDA in 2011 for Parkinson’s. After the PD patient receives an injection of a radiopharmaceutical agent ((Ioflupane I 123), the compound can be visualized in the brain by a special detector called a gamma camera. To add to your supply of fun medical jargon, this is called SPECT imaging (single-photon emission computed tomography). This scan measures something called the dopamine transporter (DaT) and can reveal changes in brain chemistry, such as a decrease in dopamine, which may help identify Parkinson’s disease and other kinds of parkinsonisms.
OMG! This sounds like a biomarker for Parkinson’s! Well, no, not quite. The Parkinson’s Foundation medical blog comments: “… the DaT test is over-used in clinical practice, and is only FDA-approved to distinguish potential Parkinson’s disease from essential tremors [a different condition that has tremors like PD, but does not present a decline in dopamine]. In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease…” The scan is qualitative and visual, so like most other radiological scans, it requires an experienced expert to correctly interpret it. The scans above are PET scans; the “Post” is after the PD patient took Levodopa.
I asked Natasha why she was receiving the DaTscan, since there is no question about her Parkinson’s diagnosis. Natasha responded “…Progression [of PD]..?. And rule out dopamine resistant dystonia which apparently is a rare form of PD that DBS doesn’t work for…?
I did some further consulting with Dr. Google and learned that DaTscan is one tool for evaluating the responsiveness of motor symptoms to dopaminergic medication which can predict the potential outcome of DBS surgery.
After taking the trace liquid, Natasha found out she had not received clear communications to dilute the liquid:
12/22/18: “…the last test on the road to a final answer on if I’ll get approved for DBS or not sure was a doozy. Was given the wrong instructions on the solution I had to drink…Not only tasted horrific but burned the hell out of my throat and everywhere it touched. I could barely swallow, felt like my throat was closing over and I had just swallowed razor blades. …The team [at the hospital] was being trained by a lady who’s travelling the country doing so. They were thrilled & excited that I was the first person ever in Atlantic Canada to get this injection and have this type of scan….My enthusiasm for being the guinea pig was not the level theirs was…
Natasha’s description of her reaction is far more graphic than the standard safety information which rather blandly says under “Adverse Reactions”: “In postmarketing experience, hypersensitivity reactions and injection-site pain have been reported.”
One more entry from Natasha’s Facebook feed: 12/20/18: “Mid January my case will go to the [hospital] round table where ..Neuromodulation team…will review the current cases and give a final Yes or No answer if I get the surgery…” Beam your positive thoughts northward to Natasha.
As has been reported previously in this blog, I am increasingly looking like a walking question mark. So it was not surprising when I was recently asked if I had scoliosis (that is, curvature of the spine). I told my friend that no, the stooped, twisted posture was a, ummm, gift from my Parkinson’s diagnosis. She told me she asked because she herself had dealt with scoliosis for many years. I asked her what she did about the scoliosis, expecting that I would hear about some new exercise. Instead, she responded, simply: “I fight it.”
I think that will be my mantra for the new year: “I fight it.” This year that is just ending has been challenging as I have “fallen off the cliff” and moved on to the next stage of Parkinson’s disease. The honeymoon is clearly over.
I have three therapeutic avenues to deal with Parkinson’s symptoms. One is medication. I have now gone through eleven different combinations since the beginning of the year, and I’m about to try one more tweak. I started this experimentation with a blog about my pharmaceutical fairy godmother (“Bibbidi Bobbidi Boo”). Alas, there is no magic wand. And as my neurologist put it, my worst symptom (crooked posture) is “not helped very much by pharmaceutical therapy”.
Therapy #2 is exercise. There’s an old gag that the definition of insanity is doing the same thing and expecting different results. I think in my case it’s not doing the same thing and expecting different results. I have returned to the personal trainer I worked with last year on correcting my posture. I rush home after each session and take detailed notes before I forget her expensive advice. Yesterday, I read through my notes from last year’s sessions. Hmmm….they sound a lot like my notes from….this year’s sessions. And hmmm….I’m doing some of her advice, but not all, and not very consistently or intensely. I think this is the biggest area to apply the mantra: “I fight it.”
Therapy #3 is….what do I call it? Mental health challenges, I guess. An example is swing dance lessons. I skipped the last two weeks because my back was too sore. But this week I was determined to show up at the lesson, since this is my last opportunity to practice before the dance party on New Years Eve. Tonight, the dance instructor gave me some invaluable tips, pointing out that when I turned under my partner’s arm, my frame tended to collapse, and I was looking at the floor, not at my partner. Gosh, you mean my posture is crooked? What a surprise! And you know what I’m going to do about my crooked posture at that New Year’s dance party? “I fight it.”
