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.

 

April is Parkinson’s Awareness Month

Why 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 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.)

 

 

 

 

 

 

 

Trump wants Parkis to die

OK, 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.

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.

Be a Stiff for Science!

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.

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.

 

Curing Parkinson’s with Pixie Dust

I 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.