Too much stuff – not enough dough

Laura models the backpack she will be using on the Pacific Crest Trail backpack as a “shadow hiker” with Pass to Pass.  This was 28.8 pounds – I’m taking some stuff out to get the pack down to 25 pounds.  I hasten to add I will not be hiking in a tie-dyed dress and sandals.  I have gotten a lot of encouraging words but so far no $$.  It’s easy to DONATE.   Pass to Pass’s modest fund raising goal is about $7000 and they are about halfway there.  They want to keep the program going by funding community gear (like walkie talkies), travel expenses, llama expenses, etc.

Place a bet on Laura!

Go to the Pass to Pass donate page and DONATE.  Here’s the bet:  if I don’t make it, I’ll contact you and see if you want  your money back.  This will keep me from backing out at the last minute!  Three ways to donate:  PayPal,  credit card, or send a check made out to passstopass.org to the address on the donation page  (avoids fees).  Let me know you made a donation via “Contact Laura” on the website or “Comment” on Facebook.

Laura’s going on a backpack!

I just sent out a post promoting “Pass to Pass”, a group of Parkies hiking the Pacific Crest Trail (PCT).  Two things have happened since then:

1)  I’ve updated that post to correctly link to their current donation page.    Rather than a general Parkinson’s fundraiser as in previous years, the focus will be on assuring that this Parkinson’s activity will continue in the future.  The group has had great growth with three full hikes on the PCT and a waiting list for 2020, and wants to raise money to make this activity sustainable for future years.  (Look at the end of this post for an important opportunity for you.)

2)  I’M GOING TO JOIN THEIR BACKPACK!

Laura at start of practice hike.

Yes, the hikes are full.  (This is dictated by wilderness rules that limit group size to “12 beating hearts” – 3 llamas and 9 hikers.)  But my husband Paul and I will be “shadow hikers” — not hiking with the group, but providing support.  We will be meeting the group at a road intersection, providing fresh food and other support.  Then we hike the remaining three days, through a beautiful section of the PCT I’ve never hiked called the Indian Heaven Wilderness.

I think I can do this!  The stats are:
–18 miles over three days,
–elevation gain of about 800 feet in the first four miles with another short climb on the last day (for my flatland readers, this elevation gain is fairly minimal),
–and a pack hopefully not more than 25 pounds.  My sherpa, er, husband will be carrying the tent, stove, cooking pot, and water purification equipment.

The tent in my backyard.

So far, I’ve done two trials:
1)  I’ve slept outside in tent and sleeping bag.  The only hard part was getting to a standing position in the morning.
2)  Yesterday, I dayhiked a trail that is about 7 miles round trip, carrying the pack that I will be using – but only about 10 pounds, not the full load.  The elevation gain was a screaming 2100 feet, which translates into a constant upward climb over three-plus miles.   Various muscles in my legs are still screaming, but I made it.

So, place a bet on Laura!

Go to the Pass to Pass donate page and DONATE.  Here’s the bet:  if I don’t make it, I’ll contact you and see if you want  your money back.  This will keep me from backing out at the last minute!  Three ways to donate:  PayPal,  credit card, or send a check made out to passstopass.org to the address on the donation page  (avoids fees).  Let me know you made a donation via “Contact Laura” on the website or “Comment” on Facebook.

The practice hike – what 2100′ gain looks like.

 

 

 

Hike the Pacific Crest Trail for Parkinson’s

Proof that I did backpack long ago.  (I cropped out the woolly mammoth in the background)

Way back in 2016, I gave a plug in this blog to Pass to Pass, a group of Parkies hiking the Pacific Crest Trail to raise money for Parkinson’s.  I sent them money, and thought that I might backpack again “someday”.  Here we are, three years later, and not only are they still on the trail, they have expanded to three trips this year (all full) and have a lengthy waiting list for 2020.    The three back-to-back hikes altogether comprise about 124 miles over 17 days. Sounds like a good DONATION.

And Laura?  Um, I think I last backpacked at least 20 years ago, and still think I might backpack again “someday”.

Hmmm….backpacking sounds really scary to me, until I read the bios of the folks who are going on one of the three trips.   The important thing right now is to DONATE.  This is how you can virtually hike the Pacific Crest Trail without breaking a sweat.

 

 

The Magic Exercise Program

Still looking for that magic….

I did not go to the Fifth World Parkinson’s Congress just completed in Kyoto, so I’m thankful for the excellent summaries prepared by Dr. Sarah King, the physical therapist behind the Invigorated Community program.  Her summary of some presentations from the Fourth Day neatly translate into a description of what I’m calling The Magic Exercise Program.  I’ve updated this blog with the names of the speakers she was summarizing. (See below.)  Unfortunately, transcripts or videos of the presentations themselves do not appear to be available.

Why do I call it the Magic Exercise Program?  Because, if you do it, according to a zillion studies and researchers, you will at least feel better, if not reduce the progress of Parkinson’s.  Much to chew over here.

So here’s the Magic Exercise Program:

1. General comments
   1. Difference between Exercise and Physical Activity- both are movement  but exercise is planned, structured, repetitive, and has the goal of improving your health for some sort of target (Parkinson’s health in this case)
   2. You get more bang for the buck to start exercise earlier in your Parkinson’s progression.
   3. But get started even if your journey is far along.  Safety is paramount so work with a PT or trainer to give you guidance and reassurance
   4. Figure out what (movement) you are good at, then make it a little harder.  Experiment.
   5. Value community.   If you exercise, but are lonely (without a social network), it’s a wash as far as the positive impact of the exercise on PD progression.  (This is a distillation of Dr. Laurie Mischley’s research presented at WPC2019.  She is from Seattle’s own naturopathic institution, Bastyr University.)
2. Aerobic Exercise
   1. Duration: At least 30 minutes a day
   2. Frequency:  At least 5 days a week
   3. Intensity:  how vigorous: 60-65% of maximum heart rate.  Should be able to still talk, but not sing.  “Moderate intensity”.
3. Resistance Training
   1. Definition: Move weights against gravity
   2. Why:  Builds strength after 16 weeks
   3. Caveat:  Does not necessarily improve function.  May be able to pick up a weight, but not your dog.  Need to tailor exercises to PD.
   4. Lung resistance training – blow into pipe.  Can help with swallowing, voice.
4. Balance Training
   1. Why:  Stability while walking.  Avoid falls by managing uneven surfaces, obstacles, multitasking.
   2. Components: balance while walking, standing. Work on flexibility, strength of core,
   3. Components: Include multi-tasking: (e.g., arms out, or carry something, look across the street as you are crossing, balance while counting backwards, or naming items in category)
   4. Components: Include obstacles (e.g., shoeboxes), uneven surfaces (e.g., dirt, gravel, forest floor)
   5. Components: Shift position: stand to sitting, stand to walking, walk in different direction,  Walk outside.
   6. Warning:  Prone to falling?  Work with PT.  Safety is the most important consideration.

Speakers from 6/7/19 at WPC who were being summarized by Dr. Sarah King:

FP3 – Is There a “Best” Exercise for Parkinson’s Disease?|
Co-Chair: Joaquim Ferreira (Portugal)
Co-Chair: Laurie King (USA)
Talk 1: Aerobic exercise for PD
Speaker: Terry Ellis (USA)
Talk 2: Strengthening exercise for PD
Speaker: Lee Dibble (USA)
Talk 3: Complex balance training for PD
Speaker: Margaret Mak (Hong Kong)

Where are my drugs made?

The pharmacy tech at the drugstore handed me yet another drug refill and warned me that the drugs came from two different manufacturers – not an unusual warning.   So that started me to wondering  — Where were my drugs coming from?  Do I have backup manufacturers?

I wrote  a post in 2015 about my drug (at the time) coming from India, a country that has never inspired me as the epitome of hygiene and quality control.  The company was Dr. Reddy’s Labs Ltd.  Turns out the company is the ninth largest generic pharmaceutical company in the world.  (What a great marketing slogan they could come up with – “Need relief?  We’re Reddy!”)

So where were my drugs coming from now?  India again?  Puerto Rico used to be a hotbed of  pharmaceutical manufacturing (due to tax breaks) but after Hurricane Maria which devastated Puerto Rico in 2017, I was not sure if that was still the case.

You would think it would be a simple matter to find out where your drugs are manufactured – you just look at the package, right?  I just got a shingles vaccine and the box very clearly says: Manufactured by GlaxoSmithKline Biologicals, Rixensart, Belgium, Antigen and Adjuvant Made in Belgium.

Not so straightforward with my Parky drugs.  First up, Ropinirole ER.  I was disturbed to find out that GlaxoSmithKline had just made a “business decision” to stop making Requip, the branded version of Ropinirole.  But the company was going to continue to make Requip XL, the branded version of Ropinirole ER.  (ER stands for Extended Release which means I only need to take one a day.)   So I guess I was OK – especially since I always get the cheaper generics anyway.

Where are the generic Ropinirole ER pills made?  The manufacturer on the pill bottles I was sold was Trigen Laboratories.  I looked it up on the Internet, and found it was HQ’ed in New Jersey – but it wasn’t clear from their barebones website whether that’s where they manufactured the drugs.  Peeling back the prescription label, I found the tiny print that said “Made in India. Manufactured for Trigen Laboratories LLC, Bridgewater, NJ.”  India is a big place – no clue on Trigen’s website (or that of their parent company, Osmotica).  I suspect we are back to Dr. Reddy’s, as it is on the list of  six manufacturers of FDA-approved generic Ropinirole ER.  Interestingly, this list does not include Trigen.

Whew – moving on to the second drug: Carbidopa/Levodopa, brand name is Sinemet.  My drugstore had dispensed these drugs into their own pill bottles, so I had no original bottle to examine.  The two manufacturers noted by the drugstore were Mylan and Actavis .  One cheery note about Mylan is that it is the largest generic drug manufacturer in the world – and (with other pharmaceutical companies) is being sued for colluding to fix  prices on generic drugs.  Mylan is also the company that attempted to price gouge Epi-Pens in 2016.  A thorough review of Mylan’s website does not tell you where my pills are manufactured, only this unrevealing sentence: “We have a manufacturing and R&D footprint that extends across four states plus Puerto Rico.”  Since Mylan has a presence in 36 other countries, my pills could be manufactured in Slovakia or South Africa, to name a few.

And what about Actavis?  Turns out Actavis was acquired by Teva Pharmaceuticals in 2016, one of several Big Pharma companies being sued for marketing of opioids.   (Teva just settled for $85 million.) I  decided to talk to a human at what is now called Teva Actavis.  I called up their customer service department and got a nice lady in their medical department.  She said the drugs were manufactured in the United States, but refused to tell me (or didn’t know) where specifically because the location was “subject to change”.    Considering how tightly the FDA regulates drug manufacturing, a company does not casually change its location.

And why does it matter where my drugs are manufactured?  One of the news articles I came across had the reassuring headline: “FDA flags manufacturing shortcomings at Actavis plant”.   Doesn’t give me a warm fuzzy….

 

Pollyanna

Pollyanna gets a bad rap.  You remember the 1960s Disney movie in which Hayley Mills is so goody two shoes, so cheerful and optimistic, that she just makes your teeth ache.  Pollyanna plays the “glad game” – figure out some reason to be glad you got crutches in the missionary barrel instead of the hoped-for doll.  Pollyanna comes up with: “I’m glad I don’t have to use the crutches.”  See, aren’t your teeth aching?

I’m thinking about Pollyanna lately because I wonder what the appropriate level of optimism is.   You may have encountered friends with severe situations: terminal diagnoses, children on drugs, crumbling marriages, or – oh yes – a doctor telling your friend they have a progressive neurological disease for which there is no cure.  It would be insulting to suggest your friend play the “glad game”.  But at the same time, some of my friends in these grave situations appear overwhelmed by negativity and depression.  Well, what would you expect?  I guess I’d be really pissed if I got the crutches instead of the doll.

However, I don’t remember getting angry or depressed when I got my Parkinson’s diagnosis.  Yes, to make for a good story, I like to say I almost burst into tears when the doctor told me I had to exercise every day, but truly that was more annoyance than depression.   Nevertheless, I feel like I have to work more consciously to be positive.  After all, the happy drug dopamine is what is in short supply.

I’m thinking about what tips I could offer to be positive, and I’d like to hear your tips.  Here’s what I can offer:
–Yes, you do have to work at being positive.  It’s a conscious part of the therapy program, just like exercise and medication.
–Pollyanna does make my teeth ache, but if you translate her “glad game” to “an attitude of gratitude”, I find that a useful outlook.  It’s easy for me to forget that I have so many aspects of my life to be grateful for.
–Get out of yourself! When somebody asks me how I’m doing (usually with that funereal tone in their voice), I’m still inclined to prattle on about my Parkinson’s.  The world revolves around me!   I’m trying to train myself to instead turn back to the questioner and respond, “I’m doing well.  How are you doing?”
–Get out of Parkinson’s!  This is another area where I’m still training myself.  I need  to talk about and be involved in other aspects of my life besides Parkinson’s.  Ragtime, anyone?
–Manage expectations.  I have encountered friends who expect that “X” will be the magic bullet, the cure, the handsome prince, you get the picture.   They are constantly crashing when their giddy hopes inevitably do not materialize.  It’s a tricky balance to incorporate a cold dose of reality into your expectations without being entirely negative.  We’re not going to get a Parkinson’s cure next year, but maybe some symptom alleviation in 10 years….?
—Don’t sweat the small stuff.  Still working on this.  One person’s “small” is another person’s “small but really important to me.”  I adore truffles and find it annoying that my husband feels compelled to complain about the (oh, so delectable!) truffle aroma EVERY SINGLE TIME I carefully dole out a tiny amount of the precious substance.
–Writing blogs isn’t for everyone, but it’s been helpful for me as a way of learning about PD and organizing my thoughts. I love comments (hint) but this blog is primarily therapy for myself.
–And last but certainly not least: Chocolate.  For heaven’s sake, live a little.

What tips do you have to stay positive?

 

 

 

 

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Do I Need a Wolfpack?

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

Win One For the Gipper!

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.

 

 

 

 

 

How do you get to Carnegie Hall?

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. 

Why a Movement Disorder Specialist?

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.