Anniversary

With a shock, I realize it’s been five years since the word “Parkinson’s” entered my life. Nearly everyone else who has Parkinson’s tells a tale of gradually becoming aware that something was wrong — “I didn’t know where my feet were below me.”

Not me.  On June 16, 2012, I woke up and, “as if by magic”, my right hand was ntremoring.  That’s why I call this blog “The Magic Trick”.

Much has changed in these five years, and much has not. Here’s some of the major changes:

—I’ve retired.  Removing the stress of a daily commute  and a fast-paced computer job was beneficial in permitting me to better manage my symptoms.

—I’ve moved.  My husband and I lived in a two-story house with a circular staircase and extensive gardening chores — lovely house but not the one to age in place.  So we moved to a one-story rambler with no lawn.

—I exercise.  This was a big reason why I felt I needed to retire – to get enough time to exercise.  One thing that hasn’t changed – I continue to kvetch about exercise and feel like it’s not very effective.  But I am working with yet another fitness trainer – more about that in a future post.

—My symptoms have expanded .  More tremors,slower actions, drooling, uncoordinated vision and the latest: with my stooped over posture, I now walk like The Bride of Frankenstein.

—My knowledge has expanded.   I started this blog as a way of finding out more about Parkinson’s Disease.  I’ve picked up a little knowledge,  but I’m just scratching the surface.

—My social network has expanded.  Through this blog and through attending Parkinson’s conferences, including two World Parkinson’s Congresses,  I have met Parkies from all over the world. Hearing other people’s stories gives me courage and optimism.

What hasn’t  changed?

—Constructive optimism.   I try to maintain an optimistic outlook, although I don’t always score 100% on the Pollyanna test – see “kvetching about exercise” above.  Constructive because I feel like I’m not being mindlessly optimstic,but tale specific constructive actions.  I still feel like Im really lucky.  Nearly everyone of my age is going to end up with a chronic disease – PD is not bad compared with cancer, diabetes, dementia, etc. etc

—My husband. I have the good luck to be married to the most wonderful guy in the world, who (bonus!) bears an uncanny resemblance to George Clooney.  He is not in the “care partner” role yet, but I know he will be able to handle this job  as we celebrate anniversaries in the future.  We’ll be celebrating 25 years of marriage next January.

Swimming for Parkinson’s

Bruce in 2016 swims-he raised over $4k.

I just wrote about hiking for Parkinson’s, and here’s another opportunity to donate– swimming for Parkinson’s.  As with the hiking, it’s no sweat – all you have to do is lift your credit card and donate.  My fellow Parki blogger, Bruce Ballard, is raising money again for Michael J. Fox Foundation by doing three one-mile swims…..IN THE ATLANTIC OCEAN!

Yes, you read right…Bruce is doing three open-ocean swims (as he did last year), wearing nothing but a Speedo and a smile.  (Because wetsuits/drysuits give some flotation and thus an unfair advantage, they are frowned upon.)  These three swims literally leave me breathless, since five minutes in the chlly Puget Sound here in Seattle would be instant  death-by-hypothermia.

Bruce’s three swims are :

– July 22: Grimaldo’s Mile (a one-mile race along the beach at Coney Island)

– August 12: Newburgh to Beacon One Mile Swim (not a race, but an open invitation to swim across the Hudson River from Newburgh to Beacon in upstate New York)

– August 26: Lake George 2.5 Kilometer Swim Race (about 1.5 miles)

Help out Bruce reach his $5000 goal – he’s about halfway there — but in swimming and fundraising you don’t want to be just halfway there!

Paul and I got to have dinner with Bruce  (and Parki the Racoon) when we visited NYC this June.

 

Hit the trail for Parkinson’s

The Pass-to-Pass team on their 2016 backpack.

Last year, I wrote about the Pass-to-Pass group of intrepid Parkis who backpacked a portion of the Pacific Crest Trail to raise money for American Parkinson’s Disease Association and Michael J. Fox Foundation.  I’m thrilled to report that they are hitting the trail again.  You can help them reach their ambitious goal of $20,000 by donating on their website, which has direct links to Michael J. Fox Foundation and APDA

Last year (their first), Pass-to-Pass raised $12,362.  They went 63 miles over 9  days, successfully renavigating on the fly to avoid over a hundred blowdowns (fallen trees).  Their route was from Stevens Pass to  Snoqualmie Pass with days as long as 9.5 miles (plus a healthy elevation gain!)  Nadean Meyer, one of the group’s “Trail Angels”, wrote me about the spirit of the group: “everyone helping others around swollen streams and… downed trees”

This year, Pass-to-Pass will tackle another portion of the PCT: From Rainy Pass to Suiattle Pass, 58 miles of glorious Washington Cascades over 9 days with a net gain of 5000 feet (over 1500 meters).   More details are on their website, including a donation page and bios of the team.  And you can hike with no sweat by following their blog and Facebook page.

I really like the team’s attitude, which they call Living LARGE.  Nadean defined this as  “a slogan and motto to not let PD define your life but to experience all things you enjoyed before your diagnosis and to find more adventures as well even if they need to be modified.”  Ah,” find more adventures”…maybe next year I’ll get into good enough shape to backpack again.  In the meantime, I’m warming up my credit card to donate!

They made it!  Happy hikers in 2016 achieving their destination.

Discipline

A usual feature of Parkinson’s conferences is The Inspirational Speaker.  I have to admit that I find these speakers….um, inspiring.  The latest speaker I encountered (at an APDA seminar) was Stephen Bergenholtz , just ending his time on the board of the Pacific Northwest Chapter of American Parkinson’s Disease Association.

Stephen introduced the concept of discipline in managing a chronic disease like PD.  He came up with eight disciplines, which he lists in a blogpost on Michael J. Fox Foundation website.   As our dopamine declines, so does our initiative and motivation.  He writes, ” (A) substitute for loss of motivation is simply discipline. The word “discipline” may have negative connotations, but all it means is regular repetition of an activity until eventually it becomes comfortable, even pleasant.”  He ended his talk with the lovely quote from Colette, the French novelist: “What a wonderful life I’ve had!  I only wish I’d realized it sooner.” You can follow the link to see what his eight disciplines are.

Mine are a little different, and I would expect everyone would have different areas to work on.  (Yes, “work on” — if you think I’m carrying out all these disciplines with ramrod posture and precision….well, look at my posture in the photo.  If I keep working on it, someday I will be able to play Scott Joplin like a real ragtime player. I’ve been practicing now for oh,  forty years or so.)  Let me know what disciplines you’re working on – and  your victories!

Laura’s disciplines:

1.  Exercise – This is my daily job: half-hour floor exercises, especially core exercises (situps, planks) plus at least half-hour aerobics (walking, swimming, elliptical, stair climber, etc.)
2. Try new stuff – I will examine when I hear myself saying “I can’t do that.”  Is that a rational judgment (sky diving) or should I give it a try (tango)?
3. Commit to activities – If I’m going to try new stuff, I need to not just dabble but commit to get to at least a comfort level.  I need to maintain interest in existing activities (singing, skiing, piano playing) by consciously striving to get better.
4. Gratitude – Be grateful every day..
5. Maintain and grow relationships — Get out of myself and take an interest in others’ lives.  Be a support to friends, a contributor to the community.
6. Get out of Parkinson’s –  No need to dwell on PD symptoms – there’s much more interesting things going on.
7. Get into Parkinson’s – It takes a village to kill this disease.  My little contributions are to participate in research and write this blog at least once a month, and preferably, two or three times a month.
8. Keep track of Parkinson’s — I am CEO of my body.  I need to partner with my medical team to observe and report symptoms.   I will try different strategies to manage symptoms. and  track results.

 

Parkinsons and Melanomas

Laura’s Dad, 1984

Freckles go with the Irish complexion.

Why do I have a  photo of my late father in this blog?  I have a photo of my handsome, Irish father mostly because Father’s Day is coming up.   But we also share the same Irish face: pale white skin,  big rectangular forehead, magnificent white hair swept straight back (OK, I’m still waiting on the “magnificent white” part), and beautiful blue eyes that (due to extreme nearsightedness) retreat so far into the head that we have no visible eyelids.

It’s the eyelids that inspired this post.  Their retreating fold makes them particularly prone to dermatitis.  I finally had to go to a dermatologist to get the appropriate cortisone to cure this extremely delicate skin area.  While I was in her office, she gave me the full body skin check.  After a lifetime of sunscreen, hats, and long sleeves, I am happy to report that my skin was all A-OK.  Even the freckles you can see in my first grade photo are long gone.

And I thought I was done needing to check for melanomas.  Nope — she said to come back in a year.  Turns out Parkis have a much higher risk of melanomas than the general population.  Why?  Don’t know – “More research is needed”.  However, one clue is that dopamine (that’s the stuff Parkis are low on) is high in melanin — so much so that the area of the brain where dopamine hangs out is called the “Substantia Nigra”  (“Dark Substance” – melanin is what gives our skin its color).

A Chinese review of 24 statistical studies on PD and melanoma totaled an impressively large number of PD patients (292,275 patients).. The total odds ratio was 1.83, which means (simplistically) that PD patients are 83% more likely to get melanoma than the general population. This does NOT mean that PD causes melanoma or vice versa – the study only indicates that PD correlates with melanoma in a statistically significant way. Repeat “Correlation Does Not Equal Causation” ten times.

Oddly (to me, anyway), another study concludes that Parkis have a lower occurrence than the general population of getting cancer — except for two kinds: melanoma and prostrate cancer.  The authors conclude that the findings in this study strongly support the hypothesis of a common genetic link between PD and melanoma.

 One more complication: Sinemet, the “artificial dopamine” (levodopa-carbidopa) taken by many Parkis, may exacerbate melanomas. Its FDA prescribing information includes this warning: “Because levodopa may activate a malignant melanoma, SINEMET should not be used in patients with suspicious, undiagnosed skin lesions or a history of melanoma.”

So, lather on that sunscreen, wear a hat, and put on that long sleeved shirt — good advice whether or not you have Parkinson’s.

 

 

Tom Isaacs, RIP

Tom Isaacs. Credit: Cure Parkinson’s Trust

I just got word from my Canadian buddy and fellow blogger Natasha McCarthy that Tom Isaacs had died unexpectedly on May 31 at age 49.  Natasha and I had both heard Tom speak at the World Parkinsons Conference in Portland in 2016; I’d heard him at some other venues.  All Parkinsons conferences feature inspirational speakers, but Tom was, gosh,  pretty dang inspirational.  And he was hilarious!

Let’s see:  Tom got a diagnosis of Young Onset Parkinsons at age 26 in 1994.  He decided to raise money for Parkinson’s research by walking the coast of his native England.   Hundreds of miles walked by a guy with a movement disorder.  Along the way, he met his future wife.

OK, pretty impressive already, right?  But wait, there’s more.  In 2005, Tom started a whole new organization, Cure Parkinson’s Trust, with the goal of finding — and funding — a cure for Parkinson’s.  In 2016, the organization raised 2.03 million pounds for research.  Take a look at their 2016 report on their website for some pretty gnarly exciting research.

This little clip gives just a hint of the humor with which Tom spoke.  It also shows his extreme dyskinesia (uncontrollable movement) — uncomfortable to watch, but you eventually shrugged it off because you realized he ignored it too.  We’ll miss your humor and leadership, Tom, but “our eyes are still on the prize”– finding a Parkinson’s cure.

 

 

What to Say to a Person without Parkinsons

The World Parkinson’s Congress has selected its Blogger Partners for its 2019 Congress in Kyoto, Japan.   I had a lot of fun as an “Official Blogger” for the 2016 Congress in Portland, OR, but didn’t apply for this round since it is unlikely I’ll go to Kyoto (too far).  I’m delighted to see that some of my blogger buddies from Portland are on the list, and I’ve started to take a look at the  blogs by the new folks.

One of them is Mariette Robijn, writing in Dutch and English.  I thought her writing style was hilarious.

And here is an example.  (I’d be curious if people without Parkinsons find this as hilarious as I do…?)

http://marietterobijn.com/parkinsons/what-to-say-to-a-person-without-parkinsons-9-tips/

Some of my best friends don’t have parkinson’s, but I still respect them. It can be hard though, to know exactly what to say at the right time without putting your foot in it.

I mean, if you don’t have parkinson’s, what DO you have? Can’t be anything special, now, can it.

But that’s where we are wrong, we, the people with parkinson’s. So to help you in your next encounter with someone who very clearly does not have parkinson’s, taking you quite off guard, I’ve drawn up a little list of things to say or ask.

1. I respect you for who you are, even though you appear to be in perfect health

2. It must be hard to know you can still get parkinson’s, but hey, we (pwp) too can suddenly come down with something as well, just google for a while and take your pick

3. From both a statistical and a life time expectancy point of view, the chances are high that you’ll get some frightfully furious freaky disease that would render parkinson’s pale in comparison. That must be quite hard to deal with, have you accepted this statistical fact yet? I’d go straight into denial mode, but then again, I can’t even begin to imagine what you’re going through. Oh well, it might never happen.

4. When did you first notice you were so incredibly healthy? Have you seen a gp? Man, you must have had so many mri’s and what not to finally have confirmed what you suspected all along: I’m healthy.

5. So what do you do to stay healthy? They say it’s very good to get as much screen time as possible, and be careful with those weird exercises. You don’t want to get yourself injured or worse, do yourself a mischief. Naah you wouldn’t, would you?

6. How do you fill your time? No exercises, no walks, no visits to an occupational neurological physiotherapeutical speech psychological health care professional. I’m really sorry your life is so boring. And lonely, no patient groups to go to, although there might be special groups for people without parkinson’s or for those without any health issue whatsobloomingever, would you like me to look one up for you in your area?

7. Does it run in the family?

8. You can’t tell from the outside that you are in fact v healthy, I mean, you don’t look healthy at all, you’re overweight, your skin is rashy, pale complexion….people won’t expect you to be healthy, how do you come to terms with such a misconception?

9. Well, all the best.

I hope that you find this list useful. It’s a first, I think, tips on what to say to p wo p.
Please don’t hesitate to send me your top tips on what to say to people without parkinson’s.

 

Exercise – Part 2

I got so many heartfelt comments about my exercise post, “Esperanza” that I decided to put these comments together in a new post.  Having other people write my blog sounds like a great setup to me.  Come to think of it, couldn’t I handle exercise the same way?  If I can hire someone to drive my car or mow my lawn, why not a stand-in exerciser?  Hmmm…have to give that some thought.  In the meantime, here’s the comments and my responses.

Trying out backpack on first dayhike of the season. More interesting exercise.

Lucy Kennedy: I’m impressed…I’m trying my darndest to do more than three days a week.
Response:  My sister has always been the most athletic of us three Kennedy kids.  I’m betting her three sessions a week are more effective than my dabbling every day.

Edmund Kennedy:  I hate exercise also! With bad feet and legs, walking is a real problem for me.
Response:  I concur with my brother.  While walking is not a problem for me, there always seem to be some pain (currently the lower back) that is exacerbated, not helped by exercise.  Back hurt like hell when I was trying out this backpack.

Pam McGaffin: I recognize that studio! I’m doing Sunday boot camps with Denise. You would LOVE her. Our triathlon-training group is starting up again . . .
Response:  Bizarrely,  friend Pam’s smiling face  beams down at me as I grunt through my exercises with my personal trainer  Pam is the star pupil of my trainer’s business partner (Denise), so Pam’s photo is on the “satisfied client” wall.  Only Pam, a cheerful woman who actually likes doing triathlons, would think  I would LOVE anyone who dragged me through an exercise Boot Camp.  (But to be not quite so negative, Pam, I have had the pleasure of meeting Denise, and she does seem down to earth, not insufferably perky like most female trainers.

M*: Hi Laura,
I’m not going to tell you what you need to do, I’m just as bad (or used to be.) The only difference is that I got lucky, and by the time I was diagnosed I was going to the gym at least 4 times a week thanks to a friend that insisted 6 years earlier that I needed to go with her. So how did I get there? The first thing was having somebody to go with. Secondly, I started doing a body pump class and I was so rubbish that competitiveness kicked in and I decided that wasn’t gonna be. And the third thing was switching to the gym at work. At the time I wasn’t running at all, but I decided that I was going to look very silly just walking next to all these very fit people, so I started running on the treadmill, just a few minutes at a time, until I could run 6Km. And when I was getting to be not too bad, I started getting toe cramps, and spent the next two years of my life not running but trying to get some doctor to tell me what was wrong. So during that time I switched to the elliptical (this is what I wanted to tell you from the start) and I thought (and still think) that it is somehow harder than running, and running is much more addictive.
So maybe you could try running? It has to be done slowly, but I’m sure your PT will tell you that. I can’t run on the treadmill anymore for a long time – crampy toes, but I can run up to 6k outside.
Sorry, I know this is a bit too long, just wanted to encourage you to try something else!
Response: My London subscriber and fellow Parki prefers not to be identified since she is still working; hence, like a good James Bond thriller, I’ll refer to her as M*.
M* favors an exercise buddy, a suggestion I’ve heard several times.  Maybe…but sounds like too much hassle to arrange – and I’d have to find the buddy first.
I am amused by M*’s remark, “I decided that I was going to look very silly just walking next to all these very fit people.”  I don’t really care what others in my busy gym think of my form on the treadmill or elliptical.   I’m barely aware of them, and vice versa.  Zumba and  other classes are a different story, since I look like the Bride of Frankenstein and can never follow the perky instructor.  So I just don’t go to these classes.
Running?    My standard joke is I only run after Metro buses and certain men.  But I occasionally try to mix in a little running in with my walks.  However, I literally can’t run to the end of my (long) driveway.  The concept of running a 5k is for me as achievable as flying to Mars.

Dawne Swanson: I also hate all exercise, if you find one please let me know and I’ll try.
Response:  Friend Dawne must be doing something right in the exercise department since she’s always a bundle of energy.  She works a high-powered senior management job and runs a winery on the side

Laura Ferguson: You need a good workout playlist. High energy. It really helps.
Response:  Right you are, my dear sister-in-law.  When I’m in the gym on the elliptical and other machines, I’m usually listening to an audio book.  At home, I tend to bop around doing various exercises while listening to something fast and rhythmic — mostly my beloved traditional jazz (ragtime, Dixieland, etc.)

Maureen Hoffmann: Brava, brava!!! Good on ya, Laura!
Response: Thanks to my pal, Maureen, for the encouraging words.

 

 

 

 

 

 

 

Esperanza

When the neurologist first diagnosed me with Parkinson’s, I was surprised but calm.  It was when he said I really should exercise an hour every day that I practically burst into tears.   Exercise for me has always been a chore.  When people say, “Oh, find an exercise that’s fun for you,” this is like saying “Find a mammogram that’s fun for you.”

The Reality

The Aspiration

At least the mammogram is productive.  I do some sort of exercise nearly every day but I still have a collapsing posture, no core, tight muscles, and can’t run down my driveway, much less around the block.   I am going to a new personal trainer, the latest of a long series of classes, physical therapists, and personal trainers.  When I complained to the trainer that my attempts at aerobic exercise didn’t seem to be very aerobic, he responded, “Maybe you need to work harder.”

Wish I knew the secret to “working harder”.  I got to the gym this morning and I boldly set the timer on the elliptical for 30 minutes.  I s-l-o-w-l-y fought my way to…. 15 minutes.  I mentally pushed myself to “another five minutes” , then “another five minutes”, but just couldn’t force myself the final five minutes.   Was I puffing and out of breath?  No, of course not.  The elliptical as usual gave me a target heart rate of 134, which I have never gotten anywhere close to.    I believe I started out at 85 this morning, and occasionally made it into three figures.

I should be inspired by Esperanza.  That’s not her real name of course.  I’m calling her that to protect her privacy and because she should inspire hope for me.  I see Esperanza fairly frequently at my gym, but I only recently learned she comes three times a week, from when the gym opens (5 am!) till about 11 am or so.  Esperanza is accompanied by her (even more remarkable) mother, because Esperanza has severe mental challenges.  I don’t believe she can even verbalize language … but she can sure do a great Zumba.

So, maybe next time I’ll make it to 30 minutes on the elliptical.  The weather is finally getting warmer and I hope to do more walking and hiking.  (This is exercise I actually enjoy.)  And shout-outs to my fellow PD bloggers who write of their victories with exercise:  Natasha McCarthy (horseback riding, Boot Camp) and Bruce Ballard (long distance swimming and 22 days of 22 pushups to highlight prevention of veterans’ suicides.)

Do you like breathing? Want to continue?

Do you like breathing?
Do you like drinking clean water?
Then you should be concerned about Trump’s Executive Orders dismantling Obama’s Clean Power Plan.

Action:  Here’s ACTIONS you can take:
1)  Submit your comment to the EPA opposing reversal of the Clean Power Plan.
This is DUE BY MAY 15.
2)  Share this posting.

More information:The Clean Power Plan was the Obama Administration’s main strategy to meet its emissions targets the US agreed to in the Paris Climate Accords.   The plan would  impact power plants in 47 states, aiming to cut their carbon emissions to 32% below 2005 levels by 2030.

This Clean Power Plan is now in jeopardy due to two executive orders:

On February 24, 2017, President Trump signed Executive Order 13777, “to alleviate unnecessary regulatory burdens”.   Each federal agency is to “make recommendations to the agency head regarding [specific regulations’] repeal, replacement, or modification.”  Criteria include regulations that “inhibit job creation”, “are unnecessary”. “impose costs that exceed benefits”, or “derive from…Executive Orders..that have been …rescinded.”

The Clean Power Plan was specifically rescinded by Executive Order 13783, signed by Trump on March 28, 2017.

What do I say?
How about this:  I oppose reversing the Clean Power Plan because it is a start to reducing our carbon emissions and meeting our global obligations under the Paris Climate Accords.
Or this:  I oppose reversing the Clean Power Plan because rising carbon emissions raise our security risks as food, clean water, and clean air are imperiled, and our coastal military installations are flooded.
Or this:  I think we will create more sustainable jobs by encouraging energy conservation and development of new non-fossil fuel energy resources.   Old fossil fuel  economies need to be phased out to protect our overall security and economy.

Need more inspiration?  You don’t need to be a scientist to worry about climate change.  Think about how it is affecting you, and quickly send EPA some comments in your own words.
–Droughts and flooding will impact agriculture and food production.
–Weird weather (think Katrina) cost billions in property damage.
–Rising ocean levels impact coastal economies and cause saltwater intrusion that could damage water supply.
–The Defense Department is already looking at security risks of military installations in coastal areas.
–Do you have kids?  Do you know any kids?  These changes will be even worse for them.