parkinson bloggers: an update

I thought i’d share an update of what i’ve been reading… blogger addition.

some in this list are new, some have been mentioned HERE (parkinson blogger gals) or HERE (more parkinson blogs) but all are wonderful PERSONAL blogs about experiences living with PD.

… what have you been reading? any others to add to the list? much love.

full of fiction for ya!

So I have a lot of people ask what fiction I’ve been reading lately (… I have a bit of a reputation), so i’ve compiled a list of all the other books (aka fiction, fluff and fun) that I’ve taken to the beach with me this summer!

Since finishing my PhD, i’ve made an effort to always have a book on the go. I ride the bus about 30mins to and from campus each day, and I use that hour to read a book for fun
… and i really make use of the public library (or else my reading habit would put me in the poor house!)
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So, here’s the list… happy reading! Any suggestions for me?
Have you read any good books this summer?
Where’d you go Bernadette? Maria Semple
This One is Mine Maria Semple
The Silver Star – Jeannette Walls
The Elegance of the Hedgehog – Muriel Barbery
Some fantasy
The Night Circus – Erin Mortensen
The Ocean at the end of the Lane – Neil Gaiman
Animals
A beautiful truth (parallel stories of chimpanzee as adopted child and research lab chimp, yes please!) – Colin McAdams
Animal Wise – Virginial Morrell *not fiction, but amazing research on animal cognition and why dogs are a man’s best friend!
And, finally, some ladies who made me laugh-out-loud (seriously, really funny stuff!)…
Is everyone hanging out without me? – Mindy Kalling
Everything is Perfect when you’re a liar – Kelly Oxford
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… k i’m taking some time off, see you in September 🙂 much love.

life in the balance : summer reads

Dr Thomas Graboys was a cardiologist at Harvard Medical and Brigham and Women’s Hospital, celebrated for his rapport with patients.

At age 49 he began with battle with Parkinson’s disease and progressive Lewy Body Dementia.

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This book chronicles his diagnosis, retirement and day-to-day physical, mental and emotional struggles. His story gives a voice, not only to persons diagnosed, but to family members and friends affected by this degenerative disorder. I think people affected by Parkinson’s will resonate with and find courage and comfort in his inspiring words.

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“extract pleasure from life … much remains, and there is a life to be lived.”

He gives his own prescription for dealing with Parkinson’s. Dr Graboys would tell you, if you were his patient:

  • Be motivated by and accountable to family and friends
  • Find a safe space (friend, therapist) to unburden your thoughts
  • Accept your new reality and judge each day by the new standard set by Parkinson’s
  • Exercise your mind and your body… realize the world is bigger than your illness
  • Do something you find comfort in (God, music, running, etc.)
  • Have a plan: illness management, the things you want in life.
  • Be proactive and take control over the things you can (diet, exercise, socialize, music, movies)

I really enjoyed this book. It is written with honesty and a sense of connection to the greater Parkinson’s community. much love.

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The great work of your life : summer reads

Stephen Cope is the director of the Kripalu Institute for Extraordinary Living (and who I had the pleasure of meeting and listening to at the NPF/Kripalu Parkinson’s yoga retreat in June!). His book The Great Work of Your Life is a guide to help you on your own life’s journey to find and embrace your true calling, or dharma (click on link to read more).

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Each one of us has gifts and has to trust in our own gift: “it is better to fail at your own dharma than to succeed at the dharma of someone else“. Bring every action into alignment with your dharma.

We have responsibility to our gift, and are responsible to give it in the way it is called for, and release all outcomes: “do your work with the welfare of others in mind“.

… in the  words of the one-and-only Dolly Parton, “Find out who you are, and then do it on purpose”.  much love.

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Whole, Rethinking nutrition : summer reads

Dr. Campbell, in the follow up to his book, The China Study, discusses the implications of a Whole Food Plant Based (WFPB) diet to research, social policy and healthcare. The China Study was a cross-sectional ecological design that found that higher consumption of animal products in different regions of China was correlated to greater the incidence of and mortality from cancer, heart disease, stroke etc.

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His central thesis is around the contribution of poor nutrition (nutritional imbalance) to cancer occurrence, or disease occurrence in general. Specifically, he states that a high protein diet increases MFO enzyme activity, leading to increased binding of toxic metabolite (AF) to DNA, causing more cancer.

He empowers us to have control over our health through the simple act of choosing what we eat. Dr Campbell states the current medical system focuses exclusively on treating symptoms, and steadfastly ignoring the root causes.  He believes the power of WFPB diet to act harmoniously on a broad variety of illnesses and that poor nutrition causes more disease than the “disease-care” system currently acknowledges.

He emphasizes that whole foods are astoundingly more potent as the same amount of isolated vitamins and supplement. This is because compounds in foods work together to be more effect in context of the whole than when in an isolated pill. As such, we don’t necessarily know how much of these vitamins and minerals we are getting from the food we eat… but that doesn’t matter because the body is smart enough to take what it needs from the foods we eat (even plant-based protein!) and waste the rest! How smart ?!

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… some food for thought! much love.

enlightenment for idiots : summer reads

In Enlightenment for Idiots, by Anne Cushman, at the command of her editor, Amanda heads to India to write a guidebook on Enlightenment. To her enlightenment is defined as;

“As I understand it, enlightenment is a state of blissful awareness that’s not dependent on any external circumstances… It’s the understanding that you’re not separate from anything else in the universe; the trees, the sun…”

On opening your body in yoga postures:

“Don’t force yourself open… Hear your body start to sing… Your body is made of stories and with every breath, you will learn that the present is made of the past.”

What it is about yoga that appeal to her:

“It’s a feeling – just for a moment – that I belong somewhere, even if it’s just inside my own skin”

She meets people along the way, like an India hotel owner who, despite his business doing very poorly, teaches her about what it means to be happy:

“Oh yes, madam, I am always happy. It is like this: What happens to us in life is for God to decide. But whether to be happy or not – that is our choice.”

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Amanda, accompanied by her new-found sadhu friend Devi Das, works her way through India and spiritual teachers, like Mr Kapoor, Hari Das, Sri Satyaji, and finds herself in a variety of situations with the purpose of “being enlightened”; yoga classes, silent meditation, being blown on by female avatars, watching death ceremony’s at the foot of the Ganges, tantric gatherings, at the bodhi tree of the buddha’s enlightenment, and caves in snowcap mountains.

… a fun, summer read that helps you realize that enlightenment is here too, all around you, and everything’s ok. much love.

prions & other misfolded proteins : summer reads

A prion is thought of as a protein molecule with no genetic material that can infect, multiply and kill. Prions are caused by misfolded ‘normal’ proteins and were “discovered” by Stanley Prusiner (who won a nobel prize).

I recently read Fatal Flaw by Jay Ingram (of Daily Planet and Quirks & Quacks), “the rough and tumble story of prions, filled with rivals, eccentrics, meddlesome governments and brilliant creatives“.

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As I sat down with my coffee and danish, I started to read about cannibalism in New Guinea and a disease “Kuru”. How appetizing. This book tracks prion disease from kuru (thought to be caused by cannibalism of prion-diseased brains), scrapie in sheep (spongiform encephalopathy), related to bovine spongiform encephalopathy (mad cow disease), chronic wasting disease in North American deer, and finally to Creutzfeldt-Jakob disease.

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The book eventually discusses other diseases that, while not infectious, do involve misfolded proteins; including amyotrophic lateral sclerosis (Lou Gehrig’s), Parkinson’s disease, chronic traumatic encephalopathy (“punch drunk”) and Alzheimer’s disease.

How better understanding prion disease relates to Parkinson’s disease is in the misfolded alpha-synuclein protein deposits that clump together to form lewy bodies. These invading misfolded proteins have a long incubation period (similar to prion disease), where it can be anywhere from 5-30 years before Parkinson’s symptoms even develop. Lewy bodies first accumulate in the nerves of the gut, travel in the spinal cord before spreading to the lower brain (substantia nigra = when symptoms develop) and eventually to cerebral cortex (which may cause dementia). This migration is thought to support the environmental theory of Parkinson’s and paralleled how cow’s who developed Mad Cow Disease ate infected meat and bone meal, which travelled from their stomach to their brain.

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Investigation into prions will help Parkinson’s by understanding

1) how midfolded proteins have the ability to move from one cell to another

2) long disease incubation periods

3) possibilities of stabilize proteins to make them resistent to midfolding, which may halt/reverse disease progression.

if you can get past the cannibalism and infected animals (sheep, cows, deer), it really tells the story of how science begins to understand disease, proteins, DNA, outbreaks, and neurodegenerative conditions. much love.