I can see…not too clearly now

Laura stares into the computer with her new “Harry Potter” reading glasses.

I was hoping there was some part of my body that was not affected by Parkinson’s. Let’ see… I think I’m still OK on my teeth, hair and hearing – no impact there. But vision – yep, that appears to be affected.

I caveat with “appears” for two reasons: 1) My neurology degree (or in this case, my neuro-ophthalmology degree) is still in the mail. 2) I’ve always had bad eyes. I inherited from my dad my sparkling wit, a big rectangular forehead, and very astigmatic Irish blue eyes.

I recently went to the eye doctor for the annual exam. Same pattern as last three years (even with two different docs): Prescription hasn’t changed significantly, but I report blurriness and double vision. The prescription already includes prisms for the double vision and she recommended separate reading glasses for blurriness. (This helps a little bit.)

The main problem with my eyes is simply age. I’ve been wearing progressives for over 20 years. The eye doc said I had cataracts before she even looked at my eyes with her magic light. How do you know, I asked. “You’re over 60.” (Yes, she needs to work on her bedside manner a bit.)

I think where Parkinson’s rears its ugly head is my perception that the eyes aren’t working efficiently together. This makes sense – you have eye muscles controlling the eye movement, and all my muscles are not communicating very well with my brain. The eyes not working well together would explain the double vision and contribute to the blurriness.

I checked out the Parkinson’s organizations’ websites (see links below) and found that eye movement and double vision can indeed be Parkinson’s related. Also, there exists a specialty of “neuro-opthamology” who “diagnose and treat the vision manifestations of neurological disease”. I haven’t run across one of those yet.

There are other potential vision problems for us Parkies, such as dry eyes, visual hallucinations, and -my personal favorite, fortunately very rare- “involuntary eye closure”. Links to vision pages:

YouTube extra: I Can See Clearly Now. I don’t know who first recorded this. This is Johnny Nash’s verison which I like a bit better than Bob Marley’s.

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Protecting the community

Photo Credit: Seattle Times

There were a couple weeks – maybe three – of optimism in late June. After living in our pandemic caves, we all emerged blinking into the hopeful sunshine.

The optimism has vanished in the wake of yet another surge of corona virus. The US has the dubious distinction of having (cumulatively) the most cases (40 million) and the most deaths (nearly 650,000 – roughly the equivalent of wiping out Memphis, Tennessee) in the world. Yet 47 % of us – nearly half the country — are still not fully vaccinated.

The reasons given are many, and constantly changing. Let’s see:

  • “My personal choice.” This excuse has come up with other Public Health campaigns such as seat belts, drunk driving, and indoor smoking. It’s your personal choice how many beers you drink, but once you get behind the wheel, it’s a DUI.
  • “I don’t trust FDA, government, Fauci (etc.)” Who do you trust? Those charlatans who are pushing bleach and cow dewormers?
  • “It’s not natural.” So you’d like a nice natural virus instead?
  • “I’m waiting.” For what? It’s been 8 months since the vaccine has been out.
  • “I’m nervous about side effects.” Millions of people have been vaccinated with no or minimal side effects (mild fever or headaches – normal signs that your body is building protection).
  • “China and Bill Gates are in cahoots to sterilize the population.” What can I say?
  • “No one can tell me what to do.” Not even your unprotected, under-12 third grader?

I find this vax refusal baffling and frustrating in the face of these undeniable facts :

  • The vaccines are safe – millions of people have gotten their jabs without turning into zombies.
  • The vaccines are effective – Well over 90% of the current surge’s cases and deaths are unvaccinated.
  • The vaccines are really are our only weapon to tamp down this virus. Masks and social distancing help but are not the protection of a vaccine. Vaccines are how we protect ourselves and our community.

So I have some questions:

— Who are these people who deliberately spread lies on social media and why?

Some of them have been identified as supplement sellers offering a Covid “cure”, but is there really enough money in supplement sales to motivate making up wild stories about Zombies and sterilization?

–What need is being fulfilled for people who read these wild stories and believe them?

— If our marketing wizards can sell Chicken McNuggets, why can’t we “sell” vaccines? Where’s the marketing campaign?

And finally –

–What can we do to bring back a sense of caring for our communities?

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Iceland

Laura at Dettifoss, the most powerful waterfall in Europe. I am attempting to stand straight.

“When a door closes, I don’t bang my head on it more than three times to make sure it is closed. I look for a new door to open.”

W. David Hoisington, Ph.D. Dr. Hoisington blogs under the pen name “Dr. C” for Parkinson’s News Today.

I have been blessed by many opportunities for foreign travel both before and after my PD diagnosis. During my post-PD travels, I have:

  • Stumbled down the steps of the ruins of Machu Picchu
  • Ogled cheeses at farmers’ markets across France
  • Hiked across yodel-worthy Alpine meadows in the Dolomites
  • Surveyed the fish markets and port distillers of Portugal
  • Made the 12-mile Tongariro Alpine crossing in New Zealand in time (just) for the last bus
  • Added to my tiny countries collection by visiting San Marino and Andorra
  • Gotten berated by the instructor for not rolling my pasta thin enough in Bologna
  • Been awakened by howler monkeys in Costa Rica
  • Stepped around the crowds on the narrow boardwalks over Plitvice Lakes in Croatia

And….

  • Walked 0.6 km to the largest waterfall in Iceland.

In some ways, the last listed adventure has been my biggest accomplishment. Certainly, it is bittersweet. Why? Because I walked twisted at nearly a 90 degree angle. The twisted posture that I have written about before had deteriorated alarmingly during July. But the Iceland cruise at the end of July had long been scheduled – a replacement for a Covid-cancelled trip last year.

I think this is the first trip in which PD has reared its ugly head and interfered with the trip. Suddenly, walking any distance became not realistic because of the constant pain in my lower back. The stress of the pain from the twisted posture just made things worse – more awkward gait, more twisting.

Suddenly the shore expeditions that included the word “hiking” in the description needed to be transferred to expeditions that included the words “bus tour”. The walking I forced myself to do was limited. I was so bent over that I started to get pitying looks from fellow tourists and worse yet, one of my shipmates gushed “Oh, you’re so brave! Such an inspiration!” Oh, puh-leeze…..What do I look like? A Hallmark card?

Airports are delightful, calm places these days….Keflavik Airport was no exception. Every cruise ship and tour in Iceland appeared to have ended their tour at exactly the same time, so the airport was packed. I had seriously considered arranging for a wheelchair (for the first time ever) but I thought it would be too much hassle — and anyway, I couldn’t quite bring myself to succumb to a wheelchair yet. It took about three hours to get through numerous lines and yes, I was stooped over the whole time. My wonderful husband carried my daypack most of the time in addition to shouldering his own daypack and a really heavy, large duffel bag.

“This too shall pass.” Hey, I got to go to Iceland! Referring to the quote at the beginning of this post, I’m not ready to admit that the door to travel is closed, much less start banging my head on the door. But I’m not ready to start planning the next trip until I can walk comfortably again. I’m working on it.

If you’d like to see our photos from Iceland, I put together a 10-minute slide show. To receive the magic YouTube link to the show, respond to this post with a comment.

Posted in Posture, Status, Travel | Tagged , , , | 6 Comments

Dyskinesia

bozo-w-laura-doll.png

What is dyskinesia? It’s a ten-buck medical word for wobbling around. – involuntary movement. Have you ever seen Michael J. Fox being interviewed? That head bobbing, body jerking and all those movements that make you squirm to watch is dyskinesia.

Dyskinesia can be a symptom of Parkinson’s and/or it can be a reaction to certain drugs, classically levodopa – what I call “fake dopamine”. Levodopa can have “on” and “off” periods. Dyskinesia varies a lot from patient to patient, but typically occurs during the peak period for the levedopa, dose, often with other PD symptoms well-controlled. The patient may not be aware of the dyskinesia – this unawareness is called anosognosia (another ten-buck word).

Dyskinesia is estimated to impact 30-90 percent of Parkies (an estimate so wide as to be useless). Here’s a slightly more precise estimate: “In a study, 70% of PD patients who developed onset of symptoms of PD between 40 and 49 years had dyskinesia after 5 years of treatment in comparison to 42% of PD patients who developed onset of symptom of PD between 50 and 59 years.” 

These tidbits are from a webinar I attended in May, delivered by Dr. Ryan Walsh, a movement disorder specialist from Barrow Neurological Institute/St. Joseph’s Hospital in Phoenix. This May the World Parkinson’s Coalition put on four days of virtual webinars, which was certainly cheaper than flying to Barcelona, where their 6th triennial conference will be held in 2023. If you wish to hear the webinar, contact me for the password. The webinar will only remain posted until August 20, 2021.

So what do you do about dyskinesia? The first thing is nothing, it’s really up to the individual Parkie how much this impacts quality of life. If you want to manage it, your doc may experiment with reducing your Sinemet (carbidopa/levidopa) and/or changing the timing and/or spreading out the Sinemet. Sinemet is normally taken every 4-5 hours, but there is a Sinemet ER (Extended Release) which spreads itself out over 6-8 hours. There’s also Duopa, the brand name for a product that uses a surgically implanted pump to steadily feed carbidopa/levidopa directly to the intestine.

My dyskinesia is very mild and not continuous (Thank God). I call it my “Bozo Doll” action because I feel like I’m bobbing around like one of those inflated toys you push over and it pops right back up. I first reported Bozo in 2018 (not coincidentally when I first started using Sinemet). I held off on doing anything about it until mid-2020, when I asked my doctor for a prescription for Amantadine. This drug is the only drug specifically approved for dyskinesia. Worked like a charm – no bobbing, no Bozo….for now. Yay! And another Yay! — Dr. Walsh reports that there are three world trials going on right now for new dyskinesia drugs.

YouTube extra: Bozo the Clown show from 1966. Remember watching cartoon shows like this after school? This one makes me cringe – if you weren’t afraid of clowns before, you will be after seeing Bozo.

Posted in Parkinson's Basics, Parkinson's Research, Status, Treatment | Tagged , , , , , | 3 Comments

Rounding Cape Heel

Do you remember learning how to fasten a button or tie a shoe? Nope, I don’t either. Seems like something you’ve always been able to do. But for the last few months, these actions have become a BIg Deal as my digital dexterity is getting worse. There’s nothing like standing in the bathroom, fumbling for five minutes to unbutton your pants and wondering who’s going to win – the bladder or the button.

When you break down the movements needed to button a button, you start to realize what a complicated task this is. Here’s the breakdown:

  1. Grab hold of the button with your right hand
  2. Grab hold of the buttonhole with your left hand
  3. Bring the two pieces of fabric together with the button underneath the buttonhole.
  4. Insert your right thumbnail into the buttonhole to open up the hole.
  5. Wrap the bottom of the buttonhole around the bottom of the button.
  6. With your left thumbnail, push the other end of the button through the hole.
  7. Make sure the button is completely through, otherwise the buttonhole may slide off the button and you have to start all over again.

Whew! How do little kids button their pants? Well, they certainly don’t break down the task like this — they just do it with one quick unthinking movement. I find that tasks that go better with a quick, decisive motion are what are starting to be challenges for me. The buttoning is an illustration of bradykinesia (“slow movements”) that is one of the four classic motor symptoms for Parkinson’s. (The other three are tremor, muscle rigidity, and awkward/stiff gait.)

Bradykinesia is why I now have trouble opening the lids of yogurt containers. Try this at home, kids! Slooooowly peel off the lid. To make it more challenging, try this on an unopened container – that extra layer of cellophane makes a difference. If you are thinking, “Well, Laura, just do it faster!”, it doesn’t work that way. This is sort of like breaking your right arm, and someone blithely tell you “Just use your left arm”.

And Cape Heel? Putting on socks (and even more so, taking them off) is another new challenge. I never before have contemplated how large my heels are. True, my shoes are AA heel width (tiny) but Cape Heel looms large, I have some pants with elastic around the cuffs and I’ve wondered if I’ll ever get them off.

But I persevere. I can still get my own socks on, thank you very much. It just takes a little longer.

YouTube Extra: See if you can watch this video of Rounding Cape Horn (a little harder than Cape Heel) without getting seasick – or terrified.

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As easy as breathing

The Fascinators – Laura, Angela Bowman, Hailey Hunt, Meg MacDonald

This is a very odd thing to say about an activity I have been practicing for…oh, almost 66 years now, but here it is:

I don’t know how to breathe.

I don’t have asthma or other respiratory ailments. I’m not short of breath or gasping for air. But my breathing is shallow and each inhalation brings in very little air. Indeed, I think I am, in some bizarre way, mixing up my inhales and exhales.

This is not a new issue, and I really think it has nothing to do with Parkinson’s. Decades ago, when I worked in the environmental business, the hazardous waste we cleaned up caused management to require all employees to take an industrial physical at the start of employment. Part of this physical was a spirometry test- testing your lung capacity. I was so off their scale (in a negative way) that they actually thought the machine was miscalibrated.

The few exposures I’ve had to yoga and other similar meditation practices have been problematic. You know that part where you close your eyes, calm your monkey mind, and focus on your breathing? For me, within four or five breaths, the monkeys have won – I get the inhales and exhales all mixed up and I have to open my mouth to get enough air. Not as relaxing as it should be.

Breathing has been on my mind lately because I have been attempting to go through an on-line Tai Chi course. I thought Tai Chi would help with posture and knowing where my body is in space. What I didn’t know is that the slow, graceful movements are coordinated with…you guessed it, your breathing. “Inhale as you form the ball. Exhale as you rotate the ball..” The instructor is slowly saying things like this, as she slowly does the movements, and as she slowly — so slooooooowly — breathes. Not me. My limited little lungs have done 3 or 4 breaths while she’s still on that looooooong exhale.

The irony of this breathing limitation is that I’ve been a choral singer since I was in second grade. So many talented, experienced directors have run me through warmups and breathing exercises. But I’m still “cheat breathing” in the midst of those long notes. This has become so much more obvious during the current pandemic, when I have participated in several “virtual choir” projects. Your vocal output is a tape of just your voice – no other singers, no piano — so there’s nowhere to hide.

But I keep singing. The picture is from a quartet I put together this spring singing a couple jazz standards I arranged into a medley. And I’m giving an informal folk music party next week (long story). I’m sure I could marginally improve my breathing if I really focused on it , but I’ve got other physical things to work on. And I suspect that my lungs are just small.

YouTube Extra: Proof that I can sing – and dance too, with my fellow chorus member, Don Dorres.

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Abracadabra with Aducanumab

W.C. Fields (Creator) - TV Tropes

“Water? Never touch the stuff – fishes swim in it .”
Attributed to actor and comic W.C. Fields.
(This is the cleaned-up version, we run a “PG” blog.)

Yes, even water can have side effects, as W. C. Fields points out. All medications have side effects and risks. It is the job of the US Federal Drug Administration (FDA) to balance the risks with the benefits before they grant approval for a drug to go public.

This week, the FDA’s credibility is in disarray after the agency approved the Alzheimer’s drug aducanumab on Monday, June 7. Three experts resigned this week from the 11-member independent advisory committee, which had nearly unanimously recommended denial last November.

So what is aducanumab? (This awkward generic name looks like something spelled backwards. The marketing name is the slightly more memorable “Aduhelm”.) Unlike other Alzheimer drugs which only manage symptoms,, aducanumab purports to actually slow the progression of the disease and delay cognitive decline. The drug is being developed by Biogen.

The controversy about approval centers on the testing. Alzheimer’s (like Parkinson’s) is notoriously difficult to test. Your test subjects are…well, in dementia…but you are primarily dependent on their responses since there is no objective biomarker to measure improvement. Alzheimer’s progresses over years so it can take years to test. One patient’s testing was described as 1 year on a placebo, 1 year on lower dose aducanumab, 2 years on a higher dose aducanumab. Whew – four years of testing.

Phase 1 of drug testing was a small trial to evaluate safety. The trial had promising results: they showed amyloid reduction. The drug is designed to clean up the amyloid plaques that many experts contend is the cause of Alzheimer’s . The hypothesis is that destroying plaques if done early enough can delay cognitive decline.

Under its “accelerated approval” program, the FDA allowed Biogen to skip Phase 2, the “efficacy” stage which answers the question “Does this drug work?” and start Phase 3, the “efficiency” stage, “Does this drug deliver therapy efficiently?”

Two Phase 3 trials were stopped early in March 2019 when an independent data monitoring committee said adcanumab didn’t appear to be working. Consequently, over a third of the 3,285 participants i were never able to complete the 78-week trials. However, by October 2019, Biogen announced it found benefit in one of the two trials for 318 participants who finished before the trials were stopped but after the cutoff point for results the monitoring committee assessed. Biogen said the highest dose slowed cognitive decline by 22 percent. There was no statistically significant improvement in the lower dose for this trial and in the other identically designed trial.

And on this tiny sample from an incomplete trial, the drug was approved. Oh yes, there are significant potential side effects. About 40 percent of Phase 3 trial participants receiving the high dose experienced brain swelling or brain bleeding. Yikes.

There’s also the painful side effect on your wallet (and the Medicare budget). Aducanumab is not a pill, it is an infusion that has to be delivered in a hospital setting. The monthly infusions will cost a mind-boggling $56,000 a year (wholesale!) – and that doesn’t include the MRI scans, the neurologists’ time, etc, Biogen has magnanimously said it won’t raise prices for the next four years.

The Alzheimer’s community (some six million in the US) is desperate for new drugs, and has lobbied hard for aducanumab approval. There are only five drugs approved for Alzheimer’s and none have been approved since 2003, 18 years ago. At least three major drug testing programs have heartbreakingly failed since then. Currently, some other drugs in clinical trials are more promising, but they are most likely three or four years away from potential approval.

To me, the worst aspect of this puzzling approval is the impact on future testing. Why volunteer for a test of these other drugs when you could get a therapy approved by the FDA? And why do further testing of aducanumab after market when you might run the risk of getting a placebo?

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

It’s All About Me

There is an unwritten requirement that all Parkinson’s conferences must feature an Inspirational Speaker. So I was not surprised, as I was listening to the Virtual World Parkinson’s Conference a couple weeks ago, to hear Tim Hague Sr. I had the pleasure of meeting Tim in 2016 when we were both Official Bloggers for the Portland WPC, and he is, well, inspirational. Shortly after he received his Young Onset Parkinson’s diagnosis ten years ago, he and his son entered The Great Race Across Canada. (They’re from Manitoba.) Incredibly, they won!

Tim has gone on to establish himself as an inspirational speaker and advocate for Parkinson’s. For the Virtual WPC, I’m sure I was not the only listener who was startled to hear Tim boldly start out his presentation by saying “It’s all about me.”

Tim’s point was that it was up to each of us “how we choose to live with the disease”. He used the term “athlete” as a synonym for a Person With Parkinson’s, noting “daily we are in a competition with Parkinson’s. ”

Tim noted that if we do not take care of ourselves, there will be no Parkies who can advocate for funding and volunteer for the research that will eventually lead to a cure. He cited the National Wellness Institute (there is such a thing?) which listed six kinds of wellness we need to cultivate:.

  • Physical
  • Occupational (how we occupy our time)
  • Intellectual
  • Social
  • Spiritual
  • Emotional

POISSE is the mnemonic , and Tim commented that “poise” refers to balance and control – something we Parkies strive for, and not just physically. I agree with Tim that “it’s all about me”. (For starters, I love to repeat the phrase!) But as I continue to struggle with a sore back from my twisted Parkinson’s posture, I have to remind myself that I am the only person who can change how I move my body. It’s a challenge.

Click here to read Tim’s blogpost affirming “It’s all about me” as he marks his tenth anniversary living with Parkinson’s . Click here to view his presentation on wellness for the Virtual WPC. (His speech is at 27:24 – 38:42; there are two other speakers and a host on this video.)

Posted in Exercise, Parkinson's People, Posture, World Parkinson Congress | 1 Comment

My Elevator Speech

“You’re really very healthy!” my GP cheerily said after my annual Medicare exam.
“Well, except for the Parkinson’s.” I responded.
“You must really have it under control. I don’t even see any tremor,” she bubbled.

That’s because I don’t have a tremor, I thought. And the Parkinson’s is hardly under control – I walk, sit, stand with constant pain in my back., due to my crooked Parkinson’s posture, If even my general doctor is relying on a stereotype of Parkinson’s, I guess it’s time to work on my elevator speech about Parkinson’s. It is appropriate for Parkinson’s Awareness Month.

Here’s my first draft:
The stereotype of a Parkinson’s patient is an old man with a tremor. Actually, 10-20% of People with Parkinson’s were diagnosed under 50, some as young as in their 20s. (“Young Onset PD”). And not all Parkinson’s patients have tremor – and tremor may be caused by many conditions. People with Parkinson’s typically have at least two of the classic motor symptoms: Tremor, Muscle rigidity, Bradykinesia (slower, smaller movements), Dyskinesia (erratic bobbing motions), Problems with gait and posture. The diminishing of dopamine causes even more non-motor symptoms ranging from depression to constipation to drooling. Symptoms vary widely among People with Parkinson’s. The saying is that if you’ve met one person with Parkinson’s– you’ve met one person with Parkinson’s.

A lot of research is being conducted about this regressive disease that affects nearly 1 million Americans, but there is still no cure, only management of symptoms. The cause of dopamine death is generally concurred to be a toxic build-up of a protein, alpha synuclein.

Whew. This would be one long elevator ride! How do the pros do it?

From my favorite Parkinson’s organization, Michael J. Fox Foundation:
Parkinson’s disease (PD) occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a “movement disorder.” But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinson’s. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time. The experience of living with Parkinson’s over the course of a lifetime is unique to each person…..

American Parkinson’s Disease Association covers many of the points I mentioned:
Parkinson’s disease (PD) is a type of movement disorder that can affect the ability to perform common, daily activities. It is a chronic and progressive disease, meaning that the symptoms become worse over time. It is characterized by its most common of motor symptoms—tremors (a form of rhythmic shaking), stiffness or rigidity of the muscles, and slowness of movement (called bradykinesia)—but also manifests in non-motor symptoms including sleep problemsconstipation, anxiety, depression, and fatigue, among others.

There are an estimated 1 million people in the U.S. living with Parkinson’s disease and more than 10 million people worldwide. Most people who develop the symptoms of Parkinson’s disease do so sometime after the age of 50, but Parkinson’s disease can affect younger persons as well. Approximately 10% of Parkinson’s diagnoses occur before age 50—these diagnoses are called Early Onset (or Young Onset) Parkinson’s disease.

And Parkinson’s Foundation, the first advocacy organization to come up in Internet Search:
Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.

Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience:

  • Tremor, mainly at rest and described as pill rolling tremor in hands. Other forms of tremor are possible
  • Bradykinesia
  • Limb rigidity
    • Gait and balance problems

Posted in Parkinson's Basics, Parkinson's Causes, Posture, Status | Tagged , | 1 Comment

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