A life without pasta??!

Everything you see I owe to spaghetti.” Sophia Loren

Sophia Loren

I’m with Sophia Loren (and millions of other Italians) : a life without pasta is just not worth it. Shoot me at dawn if I cannot have my fettucini alfredo, my papperdelle with pesto, my yummy tortellini……….

What brought this on? I was listening to a webinar by the bundle of energy Laurie K Mischley, ND PhD MPH. The “ND” after her name is not a typo, Dr. Mischley is a naturopathic doctor out of Seattle’s respected naturopathic university, Bastyr University. She is well-known in Parkinson circles for her work on relating Parkinson’s Disease to what we eat.

Some years back, Dr. Mischley started with a simple question: Parkinson’s patients who deteriorate at a slower rate than others must be doing something right. What are they eating?

Dr. Laurie Mischley

She started this research study: Complementary & Alternative Medicine in Parkinson’s Disease (CAM Care in PD). Her purpose was to “to identify practices, beliefs, and therapies used by individuals who report excellent quality of life, few PD symptoms, and reduced rates of progression.” Participants fill out a questionnaire every 6 months for five years, describing their symptoms and severity, and reporting in excruciating detail what they eat. She counteracts our generally fuzzy memory of what we eat by also having participants fill out (in even more detail) what they ate in the last 24 hours. I know about the detail because I was a volunteer participant for a number of years. Dr. Mischley always managed to pop that 24-hour survey on me right after I had done some wicked and atypical food experience: e.g., ate corn dogs and onion rings at the street festival, attended a potluck at which pies and brownies were prominent, went out to a lavish restaurant, etc. (She is still recruiting.)

To identify patients who reported “excellent quality of life”, Dr. Mischley developed PRO-PD, a Patient–Reported-Outcome scale. This provides a more quantitative, comparable way for the patient to report quality of life and the nature and severity of symptoms.

So – what are the foods that are associated with patients whose disease is not progressing as fast as the average Parkie? The good guy foods are what you’d expect: Fresh fruits and vegetables, nuts and seeds, olive oil and wine, fish (not fried) and fresh herbs – like the Mediterranean Diet. The surprise item on the good side is coconut oill On the bad side are the ususal suspects: diet soda, beef, pork, dairy, fried food, and bread. There are also some surprising foods on the dark side: Canned or frozen fruits and vegetables., chicken, and of course, my beloved pasta.

Sorry, life is too short for me to give up pasta, The frozen fruit is also a troubling inclusion on the baddie list. I routinely buy quantities of fresh produce in season, then freeze it and enjoy it all winter. I might understand canned produce being on the bad list since can processing supposedly sucks out vitamins. But frozen, vacuum-sealed fruit bought at the peak of the season?   Hard to believe.

At the webinar, Dr. Mischley did reveal what was the most asked question about food choices. She said if she had $10 for every time the question had been asked, she could pay for all her research. The question? “Which is better for you – red or white wine?

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

A creative person creating community

The morning Zoom dance. Amy’s up in the top two left frames.

On March 11, 2020 the World Health Organization declared a global pandemic. Two days later, a Parkie named Amy Carlson started “AmySaysDance”.   Amy can explain this daily Zoom event better than I can:

Amy Carlson with goofy glasses

AmySaysDance was created out of a need for connection and fun for the Parkinson’s community in the midst of a global pandemic. This group started on March 13th, 2020 and has never missed a day of dancing since. Tune in to the daily Zoom call at 8:15am PST – yes, even on weekends!
8:15am – 8:45am* Dance Jam. All different types of music are included. There is no instruction,
choreography or skill requirement, just dance!
8:45am – 9:00am Yoga Breathing. Led by one of our ASD friends, all you need to do is breathe!
9:00am – 9:30am Guided Discussion. A time for conversation and connection, topics vary big to
small but participation is voluntary!
All are welcome to the meeting, although most are connected to the Parkinson’s community.
The AmySaysDance family has produced over 12 dance videos, raised over $5,000 for the Davis Phinney Foundation, and have had over 80 people join for at least one or more times from around the world. Our community is ready to dance with you!
*All times vary, come and go as you please!
Zoom link: https://us02web.zoom.us/j/892427106?pwd=UEpsT0xXditvOGpCRHR3V3h6U204QT09

Amy just celebrated a full year of showing up every morning and dancing with her gang.     “Amy Says Dance!” and everyone boogies.   Yep, every weekday, every weekend, every holiday – even when on the road – 365 days worth.  She’s built community among Parkies, and offered a respite from pandemic isolation.   As one of her fans said, “You gave me a reason to get up in the morning.”  Another fan lauded Amy for having “the gift of glue” – gluing a community together, one ABBA dance tune at a time.

Despite (or perhaps because of) her early-onset Parkinson’s, Amy is a force of nature, busy and energetic. Among other things, she is an ambassador for Davis Phinney Foundation (a Parkinson’s advocacy group),  she is a vital cog in her local performing arts center, Lineage, and she was a recent participant in an “Imagination Festival” celebrating the life of British teacher, Sir Ken Robinson.  From that festival, here is her story about being introduced to dance for Parkinson’s at Lineage. You will get a little hint of her passion and energy. (It’s about 5 minutes.  Make sure the timer has been advanced to 6:02:52.) Thank you, Amy, for all you do.





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The final, final swan song

I am happy to report that all my body parts are intact, nothing broken.. I tried out downhill skiing one more time this last week. This really, really needs to be my Last Time. That’s why I had a nice guy in the parking lot take a picture of me in full downhill ski kit – I’m not wearing this stuff again.

Stopping downhill skiing before I endanger myself or others has been lurking for awhile. I had conveniently forgotten that I wrote a post in 2017 in which I was a bit dubious about skiing. And a post in 2018, where I ended with these weasel words: “So…quit downhill skiing?  I’m inclined (no pun intended) to do so, without an ounce of regret.” 

But last week, we finally had the opportunity to slip away to a self-contained cabin in Chelan. I didn’t even know that there was a downhill area at Loup Loup, an obscure mountain pass near Twisp. How could I resist a lift ticket of….$43! The downhill area was a small community-run hill , how hard could it be? The map showed a lot of black runs (expert), but reassuringly, there were two green runs (beginner) coming from the top of the single lift.

In reality, the green runs were steep and curvy, what other ski areas would rate as Blue (intermediate). It was not a good sign when the first thing I did after getting off the lift at the top was run over Paul’s skis, causing both of us to fall. It’s considered bad form (and a safety issue) if you can’t get up from a fall by yourself — and I couldn’t.

The whole time I was skiing, I felt out of control — speeding down the mountain, making riduculously long traverses across the ski run, flinging my arms like a beginner. I believe there are two Parkinson’s symptoms that underlay my terrified skiing. One is how much more challenging it is for me to multi-task. Skiing is a constant, high-speed choreography of legs, arms, head, eyes, poles. The other symptom is bradykinesia – making small, soft movements when skiing requires fast, sharp turns. I found myself thinking “Dig in, Laura, Turn, Turn!” but that urgent message wasn’t being transmitted to my legs.

So the time has come for me to really say goodbye to downhill skiing. I am pretty sure I started taking lessons the first year I was in Seattle, and that was 1981 – so I’ve had roughly 40 years of skiing. I’ve skied all over the western US and Canada. It’s been a good run.

And I lasted long enough to get a senior discount! Those $43 lift tickets? $39 for seniors 65 and over!

Posted in Exercise, Status, Travel | Tagged , , | 2 Comments

Can you hear me now?

Carol Clupny
Carol Clupny recording her audiobook

I am enjoying listening to a new audiobook called The Ribbon of Road Ahead- One Woman’s Remarkable Journey with Parkinson’s Disease. My friend and fellow blogger Carol Clupny wrote this book about her experiences and it was published in 2019. She recently narrated the book and the audiobook has just been released for sale by Libro.fm. (Click on the link for order information.)

Carol describes her challenges to narrate the book in her blogpost. A classic Parkinson’s symptom is that your voice becomes softer and more mumbly. This goes along with the whole bradykinesia (slow movements) challenge. As Carol responded when her publisher suggested she narrate her own book, “My voice is not going to hold up for a page, much less an entire book.”   Then there is the fatigue challenge – Carol practiced and built up her voice for months before spending a couple weeks in a recording studio.

So how’s my voice? I like to think it’s just fine, thank you, but I would be kidding myself. Way back in 2016, I was sent off to a speech therapist, who measured my voice with a decibel meter and determined that I was “softer than normal”. However, when I went to another therapist to evaluate starting a LSVT/LOUD program, she found my voice so normal and thought I was a caregiver asking for my husband.

But that was nearly 5 year ago. I lately have been recording my singing for various “virtual choir” projects. The recording is just your voice – no accompaniment, no other parts. There is NOWHERE to hide. To be blunt, I sound awful — soft, weak, breathy. Despite decades of singing with choirs, I have never “gotten” breathing. All those talented directors with all those breathing exercises – nope, I’m always mystified. When I was a kid, I would hear the old ladies singing tremolo-filled solos in church, and I vowed I was never going to sound like them. Well, that train has arrived.

But I have a challenge right now. I put together a quartet for our community choir’s virtual concert, and we’ll be taped soon. I’m singing Alto 1– acapella (no piano). Better go practice!

YouTube extra: Last summer, when we were camping together, Carol was practicing her narration and I gave her some pointers on how to do a French accent for some Frenchmen she encountered on her Camino walk.. I note that she wisely decided not to go the Inspector Clouseau route. But here is Henry Mancini’s marvelous Pink Panther theme, while you practice “zee accent francaise”.

Posted in Parkinson's Basics, Parkinson's People, Status | Tagged , , , | 2 Comments

How much should Pharma charge us for drugs?

America may be painfully polarized these days, but there is one platform we all agree on: pharmaceutical companies charge Americans way too much for drugs. U.S. brand-name prescription drug prices are the highest in the world. For those available from only one manufacturer, prices are three to four times higher than those in Britain, Japan or Ontario, Canada, on average.

So what should the drug companies charge?

This is not an easy question. No, “free” is not a realistic answer. Not only do drug companies need to cover their (considerable) costs, they should be allowed some profit too. We as a society need to encourage drug companies to continue to innovate and invest in new drugs.

My business school semi-seriously priced its tuition at “Harvard plus 10 percent”. One pricing strategy for drugs could be “Canadians plus 10 percent”. Actually, this is a strategy used by other countries, with a classier sounding name: “external reference pricing“, i.e., what’s the other guy paying.

Health journalist  Austin Frakt reports: Several studies indicate that limiting the market and profits for drugs would slow innovationOne found that when Medicare created a new drug benefit in 2006, preclinical testing and clinical trials increased for upcoming drugs for older patients…Another study found that policies in the 1980s that expanded the market for vaccines encouraged 2.5 times more new vaccine clinical trials per year for each affected disease. This fits with the general finding that more new drugs enter expanding markets that promise greater profits.

However, at some point, the profit isn’t driving innovation, it’s just driving the Pharma exec’s Maserati. Who decides where the line is between profit that motivates innovation and just plain old profit?

The classic American philosophy would be that “the market” should determine pricing. This might work if we were selling….oh, cars or tomato sauce or toothbrushes….But there is no such market for unique, patented drugs which are paid by a byzantine mixture of patients’ cash, insurance, and public funding. I do not have five brands of levadopa to choose from.

American politicians have proposed for years (but never implemented) the idea of the feds negotiating drug prices with Big Pharma. Other countries actually do this.2011 German law, for example, established a system by which a central body evaluates the benefits of new drugs. Then health insurers jointly negotiate prices. France, Britain and other nations also have systems to limit drugs’ prices and assess the value they provide, seeking to balance innovation and profit.  Many countries peg the prices of drugs to those established by other nations. (Back to the “Canadians plus 10 percent” strategy.)

It’s a new administration, and drug pricing is on their agenda. Let’s see what happens. As someone who manages five prescriptions a day, I am very interested!

Posted in Miscellaneous, Parkinson's Research, Treatment | Tagged , , , , | 1 Comment

Bathroom Fantasies

The Fantasy. (Liz Taylor as Cleopatra, 1963)

My husband and I have thought about remodeling our 1980s master bath since we moved in eight years ago. We are trying to get past just “thinking about it” and get more serious about our requirements. I hope you can help us with this project. No, we won’t make you lay tile or install plumbing. We just want to hear your experiences.

The big question for me is what to do for bath/shower. We have a large jetted tub in the bathroom. Sounds great, right? That’s what we thought when we bought the house. I have used it a grand total of two times. I’m stopped by the thoughts of cleaning out the tub and then waiting for it to fill.

The reallity – our tub

So, are you in Team Tub or Team Shower? What do you do when your back starts aching- soak in the tub or stand under the shower? Do you have those fancy pulsating showerheads? Do you have a seat in your shower?

I’m also wondering about making the bathroom more accessible for the inevitable time when my mobility is impaired. What would you do to make your bathroom safer and more accessible? Do you have handicap bars in your bathroom? Do you think they’re placed usefully or are they in your way?

What about flooring? Could you navigate your bathroom with a walker or a wheelchair? Do you have a bare floor? Throw rugs? Full carpet? My husband entertains fantasies of one of those radiant flooring systems – do you have any experience with that?

And here’s the fun question — what would you change about your bathroom? Don’t worry about money and practicality – this is fantasy time. I think my fantasy is employing some of Cleopatra’s slave girls to clean out and fill my bath — when I wake, they should be just finished scattering the rose petals on the steaming water…….aaaaah…….

 YouTube extra: Ernie from Sesame Street (he’s definitely in Team Tub) sings about his favorite bath pal.

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Time to invest in our communities

Another round of stimulus checks. Apparently Congress has learned nothing since the first round about targeting the money to people and businesses who really need it. My husband and I don’t need this money, which has already magically appeared in our bank account.

So, it is time for us to invest. I urge you to join me in investing some or all of your stimulus check in the community.

What’s my criteria for investing? I want to invest in an organization that will move our community forward, out of the morass of the pandemic, out of the massive unemployment, out of the bizarre environment of lies and misinformation.

More specifically, I can see our biggest solution to the pandemic is widespread distribution of the Covid vaccines. This is going painfully slowly here in Washington State, and apparently throughout the USA. Would more money help? I bet it would!

I asked a friend of mine who is well-plugged into the community if she had any ideas. Yep. She suggested International Community Health Services (ICHS), noting it is “providing COVID testing at Bellevue College and administering vaccinations to its largely elderly and immigrant clients.” ICHS primarily serves the Asian and Pacific Islander communities. I checked out their website and pressed the “Donate” button – easy.

Paul’s investment for his stimulus check was in a different area – the environment. We have to remind ourselves that the nonprofits that have no connection with fighting the pandemic still need our money to move the community ahead. In this case, the “community” includes both humans and critters. As the climate warms, wild critters are moving north. In Central Washington, they encounter roads, open fields with no food or cover, and towns, among other obstacles. Conservation Northwest‘s focus is connecting and protecting wildlife passageways. In September, Paul and I had the great opportunity to tour their Sagelands project that creates/preserves safe north-south routes for wildlife from Yakima to Canada. We were impressed with Conservation Northwest’s strategies to bring disparate parties together — and in the process, create community.

There are so many organizations out there that are moving the community forward — from those serving basic needs (e.g., foodbanks} to those providing honest, accurate journalism (like National Public Radio). Arts organization have been largely quieted since the start of the pandemic and are desperate for donations to replace lost revenue. Some consider arts a “frill” but do you really want a life without Mozart and Swan Lake? We Parkies continue to invest in research and support organizations. And the list goes on.

If you don’t need that stimulus check yourself, I hope you find an organization to invest in. Let me know (and let me know if you need any suggestions!) Thank you for helping move the community forward. As my friend put it: “We can only do so much as individuals, but together, we can make magic happen!”

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Earthquake – eek!

That sinking feeling – damage from the last big quake, Nisqually 2001.

I am really afraid that Seattle is going to have another major earthquake – in the next three days. Why? Well, with so many traumatic, upsetting events happening in 2020, a local severe earthquake would just cap the year. I’d been sort of joking about this mythical earthquake, when in this morning’s Seattle Times I saw this item:

3rd small earthquake — and 2nd near Carnation in 2 days — hits Puget Sound area

Eeek! Now calm down, Laura. Earthquakes (little ones) happen all the time in Puget Sound. And the article reported that all three quakes (um, let’s call them tremors, sounds less scary) had magnitude 3.0 or less. But aren’t big quakes usually preceded by a swarm of little quakes? Eeek!

Deep breaths, Laura. As my brother likes to sign his emails: “Keep calm and carry on”.

Earthquakes are like Parkinson’s. (You knew I had to tie this to Parkinson’s somehow.) You don’t know when the Big One is going to come (and it may not come anytime soon), so all you can do is manage your risks. For the earthquake, risk management for us consists of having an earthquake kit. Between the kit and the camper (assuming the quake has the good sense to arrive during the camping season), we could live on our own for at least three weeks.

For Parkinson’s, I’m not sure how I’d define the Big One — hmmm…..no longer being able to walk, perhaps? But in the meantime, Parkinson’s presents you with new tremors (sometimes literal tremors) most every day, just like the seismic version. So you need to manage those risks to your quality of life. Just as with earthquakes, panicking about what is happening to you doesn’t help.

So keep calm and carry on….and just hope we can make it through the next three days…

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Duvet or Don’t

Laura subsumed by duvet

I have a complicated relationship with duvets – you know, those big puffy comforters. Actually, the relationship isn’t complicated at all. I think duvets are — hmmm…how can I put this diplomatically — as bad a design idea as the miniskirt, low-rider jeans, and the Nehru jacket.

Europe is where we first encountered duvets. Picture the Swiss chalet with the geraniums in the flower boxes, and the beautiful mountain view out the window. There on your bed in the charming pensione is a giant mound of duvet– and nothing else – no sheet, no blanket. On a warm summer night, you have only two choices — plop the duvet over you (too hot!) or push off the heavy thing (brrrr! too cold). Unlike Goldilocks, you do not have an option that is “just right”.

So my husband found it humorous that I was recently anxiously awaiting the arrival of duvet and duvet cover from Amazon. This was my latest gimmick to get to sleep. I have tried out various gimmicks since I started having trouble rolling over in bed a couple years ago. Let’s see — gimmicks like the rolled-up towel to act as a little pillow between my knees. the large shoebox to prop up the sheets over my feet, the bedside safety bar, the leap into bed to get my legs up onto the bed and under the covers — and the gimmicks keep coming.

With the duvet, I thought that having only one item over me would make it simpler to navigate movement under the covers. In the middle of the night, my movements are agonizingly slow and I sometimes get caught up in the bed sheets. I also thought if I bought a real goose-down duvet, it would be lighter than my sheet-blanket-quilt combo, not such a drag on my feet when I’m laying on my back. With just the duvet over me, I might even be able to turn over!

Nope. Turned out the duvet was almost as heavy as my existing bed linens combo, and I still felt like I was trapped under the duvet. The biggest problem was that the duvet was waaay too warm. I started having dreams about getting lost in the hot steamy jungle. So after just two nights, I packed up the duvet and rewashed the duvet cover. (Amazon’s return process is amazing — you just take the returned item to the UPS store and they package and label it for you – for free!) There are three weights of duvets, and I could have exchanged the mid-weight “all-season” duvet for the lightest summer-weight duvet. But I decided (as I have with the other gimmicks) to drop the idea for now — just have to figure things out with my own body – keep working to solve the movement puzzle. These quotes that I’ve used before in the blog remain comforting:

“I have not failed. I’ve just found 10,000 ways that won’t work.” 
Thomas Edison on inventing the light bulb

“There’s always a Plan B.”  — Laura’s Neurologist

YouTube extra: “You Gotta Get a Gimmick” from Gypsy.

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Kuhn family, around 1920. My mother is the baby. Her mother Lillian died of TB in 1929 when my mother was 10 years old.

I got out the Haviland china for Thanksgiving. This special delicate china was originally bought by my maternal grandmother, Lillian Sankey Kuhn, in the early 1920s. These dishes are a beautiful symbol of hope to me. Imagine my grandmother buying a 12-piece set of fancy French china when she’s had tuberculosis for over a decade, and surprise! she’s just given birth at 39 to a little pre-birth-control-pill baby girl, 10 years after the third child.

My mother was born October 8, 1919. I have recently wondered how the 1918 Influenza Pandemic impacted her birth. 1918 is when the pandemic started but it went on in various locations across the globe for three years and longer. Fortunately for my mother, the pandemic swept through Butler County, PA the year before — but there had to have been scars: Influenza cases in Butler County ballooned from 3.646 cases on October 18, 1918 to 7,377 cases on November 5, 1918, almost a quarter of this rural county. Several hundred died. Did my grandfather’s general store lose customers? It just doesn’t sound like the time to buy this set of china, but Lillian must have been hopeful. The set even came with a platter and a gravy boat for the Sunday-dinner-with-the-minister roast.

Now we have some hope on the horizon with today’s pandemic. Vaccines are working their way through the approval pipeline with astonishing speed. We may even have a vaccine start to be distributed in the US by the end of this month (December). It’s still going to be a long haul until we get to whatever “normal” will look like. Even though I’m in a higher-risk group (senior), I do not expect to get access to a vaccine until at least summer of next year. The cancelled trips from 2020 that we were anticipating taking in winter 2021 and June 2021 still both look dubious. But I can see the light at the end of the tunnel – how about you?

I have hope for Parkinson’s too. A cure? No, I think that’s still years away, and I’ll probably be too, um, “advanced” for it to help me. But I am heartened by Michael J. Fox Foundation’s report: In 2020, the USFDA approved three new therapies for PD symptoms. Of the 39 treatments approved for PD, 17 of them were approved since 2014. Two drugs currently approved for PD are slated for review in early 2021 by USFDA for expanded indications. Even in this topsy turvy year, MJFF invested $60 million in research. 2020 marks two milestones for MJFF: this is their 20th year, and they’ve hit the billion mark for investment in PD research. I love their slogan: “Here – Until Parkinson’s Isn’t”. They sound at least as hopeful as my Grandmother Lillian.

YouTube extra: Mitzi Gaynor singing “Cockeyed Optimist” from South Pacific: “I’m stuck like a dope with this thing called Hope.”

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