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.

Posted in Parkinson's People | Tagged , , | 4 Comments

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!

Posted in Parkinson's Basics, Parkinson's People, Side Effects, World Parkinson Congress | Tagged , , , | Leave a comment

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!

Posted in Parkinson's Basics, Treatment | Tagged , | 1 Comment

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

“Fox it Forward” on Giving Tuesday, November 29

You know the drill:  Thanksgiving, Black Friday, Cyber Monday.   Way too much stuff (and stuffing).  To counteract all that buying, now there’s a new holiday event that focuses on giving: Giving Tuesday.  In 2015, over 700,000 people from 70 countries raised online $116 million for the charities of their choice.

My choice of charity is the Michael J. Fox Foundation — they are focused on finding a cure for Parkinson’s.   Please donate on or before November 29, and your donation will be matched (up to $1 million).  THANK YOU!

brain_money

No money….no research….no cure

Posted in Parkinson's Basics, Parkinson's People, Parkinson's Research | Tagged | Leave a comment

Make Me A Million!

Help me raise a million dollars for the Michael J. Fox Foundation (MJFF) to find a cure for Parkinson’s Disease.  Every dollar you contribute up to a million will be matched – BUT ONLY  UNTIL NOVEMBER 29!    That’s only until the Tuesday after Thanksgiving.

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Michael J. Fox – His foundation has funded over $450m of PD research!

 

To get a new drug on the market can take years and millions of dollars.  So it gives you an idea of MJFF’s laser-like focus on a cure to read that  MJFF support helped push three new drugs on the market in 2016.  They’re funding lots of other research, too.

So, just follow this link and make me a million!
https://fundraise.michaeljfox.org/Fox-It-Forward/LauraKennedyGould

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Parkinson's Basics, Parkinson's Causes, Parkinson's People, Parkinson's Research | Tagged , | Leave a comment

Cleared for Takeoff

MIchael and Kim Reed

Michael and Kim Reed

I went to a local Parkinson’s conference recently and got a surprise.  I happened to be seated by a man named Michael Reed,  and heard him talk enthusiastically about flying with another man at the table.  Turned out they were both commercial airline pilots.   That wasn’t the surprise — the surprise was that Captain Reed was still flying.

Like me, Reed got his diagnosis of PD four years ago (late 2012), and like me, he was diagnosed in his 50s, early in the progression of the disease.   Unlike me, Reed decided to stick with his job — he was, and is, passionate about flying.   Again unlike me, he’s had the energy to pursue that passion.

I was intrigued (and assured) to hear the airline industry protocol when a pilot gets a diagnosis of a progressive disease like PD.  In Reed’s case, he grounded himself.  For four months, Reed remained on the ground while researching Parkinson’s and investigating treatment options. Eventually,he Continue reading

Posted in Parkinson's People | Tagged , | 1 Comment

Investing in our future scientists

20161026_220420All right, this is supposed to be a blog about life with Parkinson’s, but I am writing on a seemingly unrelated topic, the 2016 election.  No, not that election. Yes, of course it’s important who gets elected President, but way too much ink has been spilled about the race at the top of the ballot.  And I doubt that either Mrs. Clinton or Mr. Trump have much direct impact on those critical NIH (National Institute of Health) grants for Parkinson’s research.

No, my focus is at the other end of the ballot. UPDATE ON 11/9:  IT PASSED!
The very last item on my voluminous 19-inch-long two-page ballot is a capital school bond issue for the Highline School District, a large suburban district just south of Seattle, with a school population so diverse, its website is in five languages.  The bond is on its third try in as many years.   Here in the state of Washington, we inexplicably require a 60% majority for school capital bonds, and getting 60% of the electorate to agree on anything is a tall order.  Two of the schools to be replaced date from the 1920s; I went on a tour of one, Continue reading

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