April is Parkinson’s Awareness Month

James Stewart and Harvey RabbitWhy is April Parkinson’s Awareness Month?
A.  People with Parkinson’s tend to bound like bunnies.
B.  There is a shortage of holidays in April.
C.  Exposure to Easter Egg dye may cause Parkinson’s.
D.  It seems appropriate to recognize Parkinson’s and April Fools Day in the same month.
E.  None of the above.
While I think “D” is a great answer, the correct answer is of course, “E”, none of the above.

The reason April is Parkinson’s Awareness Month and April 11 is World Parkinson’s Day is  because Dr. James Parkinson was born on April 11, 1755.  He wrote “An Essay on the Shaking Palsy” 200 years ago in 1817.  This remarkable essay described what Dr. Parkinson called “paralysis agitans”; it was renamed Parkinson’s Disease some 60 years later by Jean-Martin Charcot, an early French neurologist.  (Note to self:  Having a disease named after you does not strike me as a great career goal.)Parkinson portrait and title

Parkinson did not “discover” this disease.  Individual symptoms had been described by physicians dating back to the Roman Galen.  What Parkinson did was postulate a theory that the presence of certain symptoms grouped together was a distinct disease; he also recognized that the disease developed slowly but was progressive.  He theorized on the basis of a tiny sample:  three of his patients and three people he observed on the street.  (I would guess this essay never would have passed review in today’s medical journals.)

What symptoms?  Here they are, in their piquant antique wording, from the essay:
Resting hand tremor:  “a slight sense of weakness, with a proneness to trembling in some particular part…most commonly in the hands and arms…”
Stooped posture:  “After a few more months the patient is found to be less strict than usual in preserving an upright posture….”
Resting leg tremor:  “Sometime after the appearance of this symptom [posture], … one of the legs is discovered slightly to tremble….”
Micrographia:  “unsteadiness of his hand, whilst writing or employing himself in any nicer kind of manipulation.”
Freezing of gait, Falls:  “Walking becomes a task which cannot be performed without considerable attention. The legs are not raised to that height, or with that promptitude which the will directs, so that the utmost care is necessary to prevent frequent falls.”
Forward posture:  “…(A)s the malady proceeds….The propensity to lean forward becomes invincible…”
Sleep issues:  “… the sleep becomes much disturbed…”
Constipation:  “…The bowels….demand stimulating medicines of very considerable power…”
Drooling:  “…the saliva fails of being directed to the back part of the fauces [sic]…”

Compare the symptoms observed by Dr. Parkinson to modern diagnostic protocols.

The essay apparently drew little attention during Parkinson’s lifetime and for decades afterward, since there was nothing physicians could do to prevent or remedy this disease.  But you can’t begin to solve a problem until you have identified it.  Now — still too little in the medical toolbox, hence the reason for Parkinson Awareness Month.   The best way to recognize Dr. Parkinson’s contribution is to make a contribution to your favorite Parkinson’s organization.  (My favorite is Michael J. Fox Foundation.)

 

 

 

 

 

 

 

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Trump wants Parkis to die

trump angry.jpgOK, this is a deliberately inflammatory headline,  kind of in keeping with the Tweet school of communication from the Trump administration.

But I’m mad.  Parkinson’s research is at a very exciting, pivotal time right now and a lot of that research is funded by the National Institutes of Health (NIH).  But Trump has proposed cutting 18% of the NIH budget for 2018.  THAT’S NEARLY A FIFTH OF THE BUDGET!   Oh, and six months  into the current fiscal year, he’s also proposed cutting $1.2 billion from this year’s budget.

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Laura at March for Science, 4/22/17

Tom Price, Secretary of Health and Human Services (HHS), testified before Congress on March 29 and had the chutzpah (or idiocy) to say that this cut would not result in any reduction in research.  His magic math is that all the cuts would come from overhead — ALL of the overhead payments would be cut.   No overhead payments mean no heat, no paper, no computers, no animal feed, no payroll (because overhead payments cover all those folks in the Finance Department) — gosh, doesn’t this sound like a promising environment for research?

Even the Republican chair, Representative Tom Cole (R–OK), of the appropriations subcommittee that Price was testifying before said “this committee, and certainly me personally, will be very hesitant about” the proposed cut to NIH and other parts of HHS.

Michael White, a genetics professor at Washington University, warned: “According to an analysis by the American Society for Biochemistry and Molecular Biology, based on a model by former NIH official Jeremy Berg, Trump’s budget could force the NIH to reduce the number of new proposals by a jaw-dropping 88 percent in 2018.”

White also warned of the longer-term impact on research infrastructure:  “[This massive nearly 20% cut by the Trump administration] would set the agency’s budget back 15 years, below its 2003 level. Such a drastic cut would not just reduce the amount of science done by U.S. scientists — it would harm our scientific workforce and infrastructure in ways that would take years, if not decades, to recover from.”

Mr. Trump, could you please explain to me why destroying the US’s medical research infrastructure is good for the economy?  How, exactly, will depriving me of advances in Parkinson’s research “make America great again”?  Oh, that’s right…you need to pay for tax cuts for the wealthy and a wall along the Mexican border.

I’m emailing this post to my Congressional delegation, and to Trump, and Price.  Please join me in protesting this ridiculous, harmful cut to NIH.

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Be a Stiff for Science!

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Amyvid PET Scan

Hey kids!  Do you want to help out Parkinson’s research?  It’s easy…All you have to do is….die.

Of course there are a few requirements: For the Seattle-based program I signed up for, yes, you do need to have PD, be local to the research agency (Seattle), and participate in their ongoing research (described below) which requires visiting their site every two years.  (Requirements may vary by research agency.) Once you’ve met the requirements of your local research agency, you agree to an autopsy of your brain tissue.  You sign the right paperwork and keep the research agency informed of changes in address, next of kin, and dementia.  (If you have dementia, you are disqualified.)  And that’s pretty much it.  You’ve just given the incredible gift of brain tissue for research.

The research agency here in the Northwest is Pacific Northwest Udall Center (PANUC), Contact: Louren Reed, 206-277-5516.  This is one of the Morris K. Udall Centers of Excellence in Parkinson’s Disease Research under the National Institute of Neurological Disorders and Stroke (NINDS).  For a list of Parkinson research centers nationwide which may have a brain donation program, click here.   Also, you may find helpful this information sheet about brain donation from National Parkinson Foundation.iStock_000009472190_DNA

I found out about this research opportunity while making my third visit to PANUC. (See earlier posts about visits in January 2013 and May 2014.  I participate in a research project in which I provide a blood sample (for genetic testing), go through the standard neurological tests (e.g., gait, castanet test, balance) and perform an hour-plus of cognitive testing.

The cognitive testing is quite humbling — for instance, I consider I have a tremendous vocabulary — yet I run out of words about 40 seconds into the minute they give you to come up with words starting with The Random Letter Of The Day.  (I know, doesn’t it sound easy?)  There are numerous short-term memory tests which I think I did OK on — except for the one where you have to remember symbols (not words, letters, or numbers).  My visual memory has never been strong.  I have not gotten any results from my previous cognitive testing before. (The objective here is to collect research data, not to measure an individual.)  However, this time I asked if I could at least get a comparison to the previous two visits.    They were a little vague about whether this was possible.  Hmmm….maybe I don’t want to know.

 

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Curing Parkinson’s with Pixie Dust

Image result for pixie dustI wrote a post back in 2013 that quoted the average cost of drug development: $1.2 billion over 15 years.  Four years later, it’s probably more than that, but the point is still the same: it would appear to cost way  too much and take way too long to come up with the next wonder drug to fight Parkinson’s.

But be careful what you wish for. Would you buy a drug that was safe but you didn’t know whether it worked?  Perhaps more critically, would your insurance cover it?  This is the reported philosophy of  Jim O’Neill, one of President Trump’s potential candidates to lead the Food and Drug Administration.  During the George W. Bush administration, Mr. O’Neill held various posts at Health and Human Services Department.  Currently, he is managing director at Peter Thiel’s Mithril Capital Management.  O’Neill would be an unconventional pick, since he doesn’t have a medical background. The head of the FDA for the last five decades has either been a trained physician or a prominent scientific researcher.

In a 2014 speech, O’Neill said he supported reforming FDA approval rules so that drugs could hit the market after they’ve been proven safe, but without any proof that they worked, something he called “progressive approval.” “We should reform FDA so there is approving drugs after their sponsors have demonstrated safety — and let people start using them, at their own risk, but not much risk of safety,” O’Neill said in a speech at an August 2014 conference called Rejuvenation Biotechnology. “Let’s prove efficacy after they’ve been legalized.”

That phrase “at their own risk” gives me considerable pause — especially since the major legislative strengthening of FDA occurred as a result of thalidomide birth defects in the 1960s.  No drug is risk free — but at the same time I have some qualms about suddenly growing a flipper.  I also wonder where my insurance company would put “pixie dust” on its formulary.

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We Are Not Safer Slamming the Door

statue-of-libertyMuch to most people’s surprise, President Trump is actually carrying out his campaign threats.  The latest is slamming the door on Syrian refugees and immigrants from seven other predominantly Muslim countries.   I feel I must protest this blatanly unconstitutional and unAmerican action.  My conscience is prodded by the WWII Lutheran pastor Martin Niemoller, the one who said “First they came for the Socialists, and I did not speak out because I was not a Socialist…”  You know how this comes out: “Then they came for me — and there was no one left to speak for me.”

I’m very concerned with Trump’s threats to my safety and civil liberties.  His use of religion as a profiling device is troubling — Is Mr. Trump not familiar with the First Amendment?  Trump did his executive order  so sloppily that it caused chaos in airports across the globe, as travelers with valid visas were detained and protesters gathered.  I am proud to say the protesters included ones at the port of entry that’s a couple miles from my house, Sea-Tac International Airport.

Trump’s actions do not make me feel safer. None other than Iran’s Minister of Foreign Affairs said the order was  “a clear insult to the Islamic world,”  and “a great gift to extremists and their supporters.”   While Trump has created a recruiting tool for ISIS,  no one has been killed in the United States in a terrorist attack by anyone who emigrated from or whose parents emigrated from Syria, Iraq, Iran, Libya, Somalia, Sudan and Yemen, the seven countries targeted in the order’s 120-day visa ban.   I’d feel much safer if Trump had banned assault weapons.

And what does my protest have to do with a blog on Parkinson’s?  What if the scientist that would have made a fundamental contribution to finding a PD cure is currently a starving 12-year-old in Aleppo?  By slamming the door on immigrants, we slam the door on innovation, and weaken our country.  As Mr. Trump would say in one of his Tweets….SAD.

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It’s All in Your Head

Depression and anxiety can be symptoms of Parkinson’s, results of having PD, and/or side effects from PD medication.  Yet we still have a stigma about addressing mental health aspects of PD.  “It’s all in your head…just buck up and you’ll be fine.”  I have written before about my fellow PD blogger, Natasha McCarthy, from Prince Edward Island, Canada.  She is a remarkable woman, mother of two beautiful little girls, in her 30s with Early Onset PD.   I was so moved by her blunt post about mental health (1/25/2017) that I have reprinted excerpts below.  Please check out her entire column and her blog at A Broken Body’s Journey.

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Natasha McCarthy

…This post ….has been looming in my head for a while now. Too fearful of people’s opinion’s to share it. It’s really heartbreaking how something as important as mental health, but the reality is people are embarrassed of it, they feel depression or anxiety or anything related to mental health that we are struggling with makes us weak. I say us because I struggle with it too, I never did before PD…

Many would think getting diagnosed with Parkinson’s would easily be enough to become depressed. And yes indeed of course that happens. However in addition to that many people get depression, anxiety and issues with apathy as a symptom of the disease … Not unlike myself, who never had an anxious bone in her body and now I suffer with social anxiety, part of which is a fear of people seeing my symptoms which sounds ridiculous because everyone knows I have PD. …

Now, deep breath…. I see a psychologist once a week. Dear lord I just said it. Yup that’s right, I started to go to one back in November. I still feel embarrassed when I walk into the building and have the thought in the back of my head “I wonder if anyone I know will see me going in there”. When really I should be proud of myself for going and seeking help if I need it. But that’s just not the way we think in this day and age in our society. Why do I go, you are wondering? Well in a nutshell I had to give up my career in August of 2013 because I was unable to do my job. …Giving up my career was a blow …and I struggled greatly with it.

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Laura with Natasha McCarthy at World Parkinson Congress, Sept. 2016

However, because of struggling with said loss of career I tricked myself into believing that I had dealt with this loss. When in reality I did not deal with it at all, I simply jumped in feet first and replaced it with being a stay at home Mom. I only had one [child] home with me, my little Izabella, as her big sister Samantha was gone to school by then. …I consumed my life with my new “career”. And then the day came, this past September when my baby got on the school bus with her big sister and I watched them drive away to their adventure for the day. Then I turned and walked back up the driveway admittedly tears streaming down my face … I remember thinking that day “what the hell am I suppose to do now?” To be honest I’m still trying to figure that out, hence going for counselling once a week. I’m trying to get the tools to deal with my anxiety and to cope with feeling like I have no purpose and trying to figure out again what that is. I’m trying to learn to be honest fully with all the changes and things Parkinson’s has done both to me and for me and see things in a different perspective. I go to try and figure out my way moving forward.

Did I come to the decision to get therapy easily? No, not at all. I thought about it on and off for all of September and October always making excuses over why I didn’t need to go. Always the stigma of what people would think looming. I left the house less, I would buy everything down to laundry detergent online so I wouldn’t have to go to a store. I would have days where I would not shower or get dressed other than to take the kids to their activities. ….

I did share at our last local [PD] support group that I was going to a psychologist….I felt like there was a cement block on my chest as the words were coming out of my mouth… Why do we do that to ourselves? Let’s STOP doing it. Let’s not be ashamed when we are struggling emotionally with something. ….If you are feeling low and you can’t get out of your own way and you can’t get past the funk you are in, to hell with everyone else and what they think. Go get help!

…Today I feel terrified & brave all at the same time. But I’m gonna focus on the brave part. I’m gonna enjoy this big sign of relief and feel the joy in being fully honest, not embarrassed and REAL. Because life isn’t always sunshine and rainbows and that’s ok! Let us all be brave!

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Flunking Breathing

louie-armstrong

Louie Armstrong

When I was in school, I considered myself a top-of-the-class, All-‘A’s, always-does-the-extra-credit….well, you get it, I thought I was smart.  Only upon becoming an adult and joining the workforce did I realize that I was only smart in the narrow areas measured by standardized tests.

In the realm of physical intelligence, I’ve always done poorly.  I have been taught how to tie a bowline knot at least 72 times — just don’t get it.  I only took the dreaded P.E. because physical education class was required for graduation..  It sets my teeth on edge when the perky greeter at the gym says “Enjoy your workout!”  This is kind of like saying “Enjoy your mammogram!”  I am struggling through ballroom dance classes as a brain/body exercise to keep my last little bits of dopamine pepped up.

And now I’ve hit bottom in the physical intelligence realm – I’m flunking breathing.

I reported in my last blogpost that I was starting to be unable to exhale into my gizmo as the resistance got slightly higher.  (The gizmo is the EMST150 to build up exhalation muscles.)  I visited the speech therapist yesterday, who was chagrined at my irregular results.  I was hoping she’d reveal the secret trick I had been missing, but she just said I was thinking too hard about the breathing process.  And like the ballet instructor with the yardstick, she admonished me  (yet again) about my slumping posture.

Alas, nothing’s working — sitting up straight, thinking about breathing, not thinking about breathing.  And the slumping posture is killing my back.  My goal is to do five successful exhalations in a row.  Out of 14 sessions so far this week, I’ve done this….once…oh dear.

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Herb Alpert

I’ve also realized that I can never be a great trumpeter like Al Hirt, Herb Alpert, and Louie Armstrong.   I’ll never have that kind of lung power.  But fortunately, playing the trumpet has never been a goal for me.  Let us be grateful for people who have great trumpet intelligence!  Check out Herb Alpert and the Tijuana Brass doing “Tijuana Taxi“, Al Hirt playing “Java” in an unintentionally hilarious Ed Sullivan show,  and the immortal Satchmo playing (and singing) “When the Saints Go Marchin’ In.”  Whew!  Those saints are jivin’ up in heaven!

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R-E-S-P-E-C-T

Aretha Franklin.jpg

Aretha Franklin in the 1960s

I have to confess that my speech therapist concluding that my voice was getting soft due to Parkinson’s just scared the beejeezus out of me.  Why?  I love to talk  and tell tales.  But even more, I love to sing.    I’ve sang since the kids’ choir in church in second grade to my current gig, a community chorus for, um, singers of a “certain age “, hence the cute name “SilverSounds”.  Our slogan is “You’re never too old to rock and roll”.   Among this year’s songs is “R-E-S-P-E-C-T”..Yes, yes, yes, I HAD to do that Aretha Franklin solo.  So  you see now why I’m scared  I won’t be able to belt it out — All I want is a little respect!

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Laura blowing into the EMST150. Note the stylin’ noseclips

So I am working on building up my breathing muscles with the EMST150 — Expiratory Muscle Strength Training device.  Here’s the routine: you inhale, then wrap your lips around the tube and rapidly huff so that  you hear the exhalation.   And that’s it.  Hmmm…as easy as breathing, you might say.  But for starters, you have to breathe five times a session, five sessions a day, five days a week for (you guessed it) five weeks.  And then each week, the device is cranked up to have more resistance. I went through the first two levels without much problem, but now I have gone through the third week, and am really having trouble with the third level.  There are two more weeks and two more levels to go — oh, oh.

I have always had trouble generating much air.  If I were forced to blow up balloons, I could never do it.  And I also have trouble (mentally) with the breathing process.  True Confessions:  All those years and years of excellent choir directors taking the choir through breathing exercises — I never could figure out what they were talking about.   I had only a vague idea where my diaphragm lived, and there was certainly no muscle action happening there.  And you know those meditation exercises where  you concentrate on your breathing?  I would almost immediately get lost and mix up my inhaling and exhaling — hardly contemplative.  Only recently have I learned that inhaling does not go in, but out.

The good news is that I’m starting to get a feel for filling my chest with  air then sucking in that diaphragm with  a rapid exhale.  The bad news is I can’t seem to translate this movement to successful exhalation into the device. I hope I get some pointers from the speech therapist — Aretha is counting on me!

Listen to her belt it out from this 1967 video!

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Can you hear me now?

In the last year or so, my Beloved has suffered from “husband deafness”.    Even when I am talking in a perfectly well-modulated conversational tone, he complains that he can’t hear me.  I urged my husband to get a hearing test and sure enough, he has some mild hearing loss like most of us over 60.  Aha!  I am vindicated.

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Respiratory measuring devices, the EMST gizmo, and the attractive nose clip.

Not so fast — one of the tricks that Parkinson’s plays on you is that your brain thinks you are talking normally, but you’re actually talking softly.   Parkinson’s also atrophies all your muscles, including the ones used for speech.  The $10 medical term is “hypophonia” —  this sounds like you are a super phony (a useful word these days) but literally translates to “under voiced”.

Do I have hypophonia?   Debatable.  I was sent to a speech therapist, who gave me about an hour’s worth of evaluation tests: speaking in a normal conversation, speaking about a subject you are excited about, reading aloud, and many other tests.  The therapist measured my speech generally in the upper 60s (decibels).   So what’s normal?  This is the debatable part.  My therapist said normal conversation was 72-76 decibels.  However, a quick visit with my research associate, Dr. Google, puts normal conversation at 50-65 (National Institute of Health), 60 (Center for Hearing and Communication), 60 (Noise Help).  By most organizations’ standards, I speak well within the range for normal conversation.  I also don’t have the monotone typical of Parkies; my voice goes up and down  to help convey my meaning.  However, it’s irrelevant whether I have hypophonia now — given the speech therapist’s evaluation, I will eventually have hypophonia, like an estimated 89% of Parkies.

There are two main types of therapies for hypophonia:
–Purely physical: Build up the breathing muscles in the diaphragm.
–Physical and mental: Train the brain to match the perception and reality of speech volume.  Also, train breathing muscles to work more efficiently.

These are not competing but complementary therapies.  I have started on the first one, which features an attractive nose clip and a little gizmo called the EMST150 (Expiratory Muscle Strength Training.)   More on this in a future post…but don’t hold your breath!

 

 

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

I Love to Laugh

You’ve probably been reading about “fake news” and our new “post-factual environment”.  So you can imagine how dubious I was when I scanned through my Facebook and saw one of those “sponsored pages” (i.e., an ad).  The page was from some Parkinson’s organization I had never heard of and asked if you had this Parkison’s symptom — uncontrollable laughter or crying.  “Share your experiences with the pseudobulbar affect,” the ad said (or something like that — the page has disappeared when I went back to Facebook.)

Uncle ALbert (Ed Wynn) guffawing with Jane and Michael Banks on the ceiling

Uncle ALbert (Ed Wynn) guffawing with Jane and Michael Banks on the ceiling

Uncontrollable laughter — this sounded like a great joke.  I immediately thought of  Ed Wynn singing “I Love to Laugh” in Mary Poppins.  His character, Uncle Albert, had such a  bad case of uncontrollable laughter that he floated up to the ceiling, “full of glee”,  as he bellowed:
I love to laugh, long and loud and clear —
I love to laugh, it’s getting worse every year! 

And uncontrollable laughter really doesn’t sound like such a bad thing.   I will freely admit that ever since the election I’ve been pulling the covers over my head (metaphorically and literally) hoping I will wake up from the bad dream.  Laughter sounds like a great idea.

But uncontrollable laughter is really a medical problem.  I Googled the phrase and sure enough, up popped “pseudobulbar affect”.  And – aha, no wonder I got a “sponsored page” — there is a drug to deal with it.  The second listing on the Google search is headlined, “Do I have PBA?” on a website created by a pharmaceutical company featuring a handy quiz you can discuss with your doctor.

The definition from this same website:  “PseudoBulbar Affect (PBA) is a condition that causes sudden, frequent and uncontrollable episodes of crying and/or laughing that don’t match how you feel inside. It is a distinct condition that can happen in people with a brain injury or certain neurologic conditions.”

Another website from, hmmm….the same pharmaceutical company, informs me that none other than Charles Darwin was the first guy to describe this condition.   PBA is described as a short circuit between the areas of the brain that expresses emotions  and the area of the brain that controls emotions.  And where does the funky term come from?  “Pseudo” means false, “bulbar” refers to the brainstem and “affect” describes how the body shows mood or emotion.

Uncontrollable laughter isn’t a symptom I’m too concerned about – it’s treatable and impacts perhaps 3% of Parkies.  I’m more concerned about continuing to have laughter in my life.  Drop me a comment and tell me what you do to keep the laughter coming.  And in the meantime, get a chuckle out of Ed Wynn on YouTube.

Laura exchanges goofy grins with fellow blogger Timo Montonen.

Laura exchanges goofy grins with fellow blogger Timo Montonen at WPC.

 

Posted in Parkinson's Basics, Parkinson's Research, Side Effects, Treatment | 6 Comments