Think Pink

Image result for think pink funny facePINK1, Parkin, PARIS….Hmmm….sounds like….Oh, I don’t know…perhaps choices for pink-hued wallpaper?

Nope, turns out to be types of proteins important to brain health and to understanding Parkinson’s.

And, right away, my eyes glaze over, and I wish I’d paid a little more attention in my one and only biology class in 10th grade.  (Had they even invented genes back then?).

So let’s start with the basics:
–Genes?  Proteins?  Are these the same?
No — Parkin (say) is the protein and “the Parkin gene” means “the gene which contains the instructions for producing the Parkin protein.” Each gene tells the cell how to put together the building blocks for one specific protein. However, the gene (DNA) sits inside a different compartment of the cell (the nucleus) from the location of the cellular machines that make proteins (ribosomes). Therefore, the gene must first make a copy of itself (called messenger RNA – mRNA), which is smaller and more portable than DNA and is able to leave the nucleus to reach the ribosomes. A ribosome then reads ….the mRNA code and converts the instructions …to form a protein., Usually, when a protein is not properly produced, it is because there is some mutation in the gene which contains its instructions.

–What’s with the cute names of proteins?
You will never get that Nobel Prize in Chemistry without a cute acronym:
PARIS: Parkin-Interacting Substrate protein (PARIS)
PINK1:  PTEN-induced kinase 1  (aren’t you sorry you asked)
     Parkin:  Named after you-know-who.

–What’s the deal with these three proteins?
A recent study links PARIS with the two other proteins in a pathway that protects dopamine-producing brain cells from death.  Damage to these proteins can lead to abnormal activity in the mitochondria (energy powerhouse of the cell) which results in cell death.  (Bye-bye dopamine produced by these cells.)

–Yeah?  So what?
The study lead, Ted Dawson, MD, PhD, found that intervening on the PARIS protein, which links these two proteins and dopamine cells, reversed cell death in both rare genetic forms of PD and sporadic PD, in which the cause of the disease is unknown.

–So does this mean Parkinson’s is genetic?
Not usually.  Only about 15% of Parkies (not me) have genetic mutations that are tied to PD.  (Seventeen new gene mutations were just identified in 2017!)  But understanding the cellular/genetic  mechanisms of PD helps all of us Parkies.

YouTube bonus: “Think Pink”, From the 1956 movie Funny Face  (an unfortunate waste of the talents of Fred Astaire and Audrey Hepburn, neither of whom show in this number.  But you gotta love all those fitted suits, gloves, and hats.)

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Challenge accomplished!

IMG_20190818_083504My backpacking challenge was accomplished!  But not quite as I anticipated.

I was honored to join the PassToPass.org on a Pacific Crest Trail backpack  and meet people both courageous and interesting:

Martha and John Carlin — After John got a Parkinson’s diagnosis in 2002, Martha started educating herself about the disease and eventually founded a company, The BioCollective, to research the human biome and help find a Parkinson’s cure.  She matter-of-factly told me,  “We collect poop.”

Steve Peters — With the slow, small steps of someone who has had PD for a long time, Steve persevered on the trail.  Perseverance even though his son (and support person) couldn’t get time off from work and had to drop out at the last minute.

Derek and Seth Torry — Derek, diagnosed at 40 with YOPD (Young Onset PD), and his son Seth were the wranglers for four llamas.

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Lori and Laura still smiling on the trail!

Laura and Garth Hitchens — A bright, bubbly woman with an excellent first name, Laura got her diagnosis at 51 and is active in YOPD activities.  Her husband Garth came as her support person.

Lori Schneider — Her trail name is “Seven”.  Why? Because she’s summited the highest peaks on all seven continents — all with multiple sclerosis.

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Bill Meyer at our campsite.

Bill Meyer and Mort — Bill is one of the founders of PassToPass.org.  Just a few days before this hike, Bill had the battery replaced (under the skin) for his DBS.  His doctor forbade him from carrying any weight, so Bill’s brother-in-law Mort stepped in to help carry Bill’s stuff.

And how did I fare?   After many tryouts, my fifth backpack, which I  borrowed from a friend (Thanks Jan!), fit me reasonably well.  The first day I had the luxury  of having the llamas carry my sleeping bag and food bag.  But after a sleepless night in a claustrophobic tent, I persuaded Paul to hike out the next day.  “I can do this, ” I thought, based on the information I had: 11 miles, all downhill.

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Note my weary expression and leaning posture, after about 3 miles of unexpected elevation gain. Mt. Hood in background.

Ha ha.   Much to my surprise, there was plenty of elevation gain and almost equally taxing elevation loss.  The “elevation loss” info I had was a net amount.  And the distance was more like 12 miles.  And of course, since we had separated from the group, we couldn’t make use of the llamas,  My handsome sherpa came to the rescue.  He was already carrying the tent, stove, fuel, cooking pot, and water purification.  He added one of the back chair pads and for the last three miles, he carried my sleeping bag in his hand.   And for the final mile, he came back to carry my whole pack.  What a guy!

So, not quite what I anticipated.   But hey,  three days’ distance in two days!  Guess I need to figure out a strategy how to sleep on the ground.

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Highlights from World Parkinson’s Congress in Kyoto (WPC2019)

Laura and Diane in 2013

Since 2010, every three years the international Parkinson’s community — researchers, medical personnel, Persons with Parkinson’s, caregivers — has put on a worldwide conference to share information and build community.   I had the great opportunity to attend Montreal (2013), and Portland, OR (2016).  I elected not to attend 2019 in Kyoto, Japan but fortunately, my buddy from the Montreal conference, Diane Daignault of British Columbia, did attend and graciously shared her notes with me.  I’ve edited lightly.   She commented: “The choices of lectures seemed endless – with lots of great topics based in both research and practical aspects. There were also demonstrations, health rooms and theatre presentations to watch as well.  Caregivers had their own space for learning and conversing….  There really was something for everyone.”

Non-motor Complications

Hypotension (Low blood pressure)

Tim Anderson from New Zealand discussed the link between low blood pressure (aka hypotension), dizziness and Parkinson’s.   Anderson had a number of suggestions on how to manage hypotension during the day:

  • Small, frequent meals rather than a large meal keeps blood pressure steady.
  • Coffee in the morning and salt during the day may even the blood pressure during the day.
  • Use compression stockings
  • Get up slowly, taking time to move from lying down to sitting up, and from sitting up to standing.

Frequently, PD patients with hypotension have high blood pressure during the night which complicates matters. Anderson suggested addressing the nighttime high blood pressure by: raising the head of your bed so that the bed is lower at your feet (try putting blocks under the bed legs at the head of the bed).

Psychosis

Jennifer Goldman of the US spoke about psychosis which may include illusions, a false sense of presence, hallucinations, and delusions.  This can cause caregiver strain as well as financial strain.  Sometimes clozapine, quetiapine, pimavanzserin and/or cholinesterase inhibitors are used as drug therapy.

Autonomic issues

Shen Yang Lim from Malaysia discussed autonomic challenges that can be common, even in early PD.  Gastroparesis (delayed gastric emptying) can be helped by low fat meals, help from a dietitian or the drug domperidone.   To control drooling, there are drops available.  Urinary dysfunction and constipation may be treated with anticholinergics, mirabegron or colifenacin drugs.

Cognitive impairment

Daniel Weintraub of the US discussed cognitive impairment.  Vascular risk factors and orthostatic hypotension can cause cognitive impairment.  Anticholinergics and benzodiazepine and physical exercise may reduce the problem.  Patients with psychosis and sleep problems are more likely to do worse.  Rivastigmine helps for PD dementia while memantine has no effect.

Surgical advances & Infusions

Deep Brain Stimulation (DBS) – Hardware

Dr. Kelly Foote of USA spoke on the topic of deep brain stimulation (DBS).  Deep brain stimulation is used for treatment of PD symptoms, particularly tremor and dyskinesia.  In his opinion, the placement of the probes is the most important aspect of this surgery.  The surgeon, neurologist, and hardware programmer collaborate to choose the best brand of programmable hardware (with up to 8 contact points), depending on each patient’s unique situation.  Hardware includes: Medtronic,  Abbott’s  St. Jude, and Boston Scientific.  Each brand has pros and cons.  In the past, deep brain stimulation hardware had challenges with replacing batteries and wire leads breaking in the system. Both have been reduced in the new hardware with rechargeable batteries now an option and the newest hardware being equipped with zero-wire-lead-breaking technology.

Deep Brain Stimulation (DBS) – Programming

Delving further into deep brain stimulation (DBS), Professor Michele Taliati, also from the US, discussed programming DBS devices.  He claims that DBS programming is most important.  Either one or two probes (bi-polar) can be placed in the brain.  Two probes can reduce side effects.  Programming allows for the adjustment of pulse width, amplitude and rate.  He also introduced the concept of “impedance”.  The medical dictionary defines it as “the resistance in alternation current circuits.”  Medical equipment is often rated according to impedance to allow for optimum performance by matching impedance rates.  During the question period, he noted that patient behavior can be changed by DBS.

Levadopa processing

Peter LeWitt touched on some novel therapies.  He explained that Levodopa goes to the gut, than to the brain.  Sometimes it stops in the stomach, where food can affect its rate of absorption in the gut.  After that, the Levodopa crosses the blood/brain barrier.   As a result of this complex absorption process, Duodopa is now being used and new ways of administering it are being explored.  For example, a novel drug therapy being tested is the “accordion pill” which dissolves slowly.  Alternatively, CVT-301 is an inhalation powder meant to produce rapid rescue when the pills don’t work.  While ND-0612 is infused under the skin for rapid rescue.  Another option is Apomorphine which is intended for on demand by injection.  Under the tongue medication and continuous injection are also being considered and tested.

Other Parkinson’s research

Alpha-Synuclein in your gut

I attended a technical lecture about alpha synuclein (A-syn).  Since the last congress three years ago, A-syn has been found in the appendix.  Apparently, a-syn spreads from the appendix to the gut and by the vagus nerve to the brain.   Different shapes of a-syn aggregation have been identified with each representing a different disease – i.e. PD (spaghetti), ALS (ribbon fibril) or MSA (linguine).  These aggregates form Lewy bodies.  The scientists have discovered that a-syn connects with 178 proteins; however it is not yet known if any of these cause PD or are a result of it.  What I gather from this is that the researchers have learnt a lot but are no closer to finding a cure.  Additional testing and research is needed to further define the role of a-syn and Lewy bodies in relation to PD.

Loneliness’s impact

Laurie Mischley from Bastyr University in Seattle, WA offered practical research and advice around PD.  This was very welcomed by the audience.  Mischley has been surveying People with Parkinson’s to find what helps and what makes PD worse. One of her key conversation points was that loneliness plays a significant role in the health and wellness of those with PWP.  In fact, her research shows that loneliness can wipe out the advantages of 6 days/week of exercise.   She also noted that it is impossible to link the impact of one type of food to PD or on those with PD in a scientific trial, as people need variety of foods for proper nutrition.  Additional information is available on this summary of  her recent research:   https://vimeo.com/191664871

Music and Parkinson’s

One of the most surprising lectures I attended examined the link between music and Parkinsons.  The leaders explained that music and movement can change the brain.  Even those with late stage PD benefit from singing, dancing, or swaying to the music.  The type of music or dancing doesn’t matter – they all work and improve the health and wellness of those living with PD.

Posted in Exercise, Parkinson's Basics, Parkinson's Causes, Parkinson's People, Parkinson's Research, Treatment, World Parkinson Congress | Tagged , | Leave a comment

Too much stuff – not enough dough

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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:  PayPalcredit 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.

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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!

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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.

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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:  PayPalcredit 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.

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The practice hike – what 2100′ gain looks like.

 

 

 

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Hike the Pacific Crest Trail for Parkinson’s

Laura bkpking-1980smaybe

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.

 

 

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The Magic Exercise Program

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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 programHer 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)

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Where are my drugs made?

flags-globeThe 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.brain image

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….

 

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Pollyanna

Image result for hayley mills pollyannaPollyanna 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?IMG_20190603_171739 (2)
–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?

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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

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