Much Ado about Parkinson’s

As we celebrate the 200th anniversary of Dr. James Parkinson’s groundbreaking essay of “The Shaking Palsy”, there seems to be a flurry of announcements of possible breakthroughs in diagnosis and treatment of Parkinson’s.  Eight years ago, when I was first diagnosed with Parkinson’s, the prevailing theories all stated that PD was a disease that started with “dopamine-producing cell death in the brain.”  Sometimes the cause was genetic.  Other times exposure to pesticides or other chemicals were to blame.  But most of the time, there was no apparent cause.  Just 6 months ago, at the World Parkinson’s Congress, we began to hear about  different ways of looking at PD.

We have known for years, that Parkinson’s is a designer disease.  The progression can be very different for each person.  But now doctors and researchers are looking at PD as a group of syndromes, not just a single neurological condition that caused movement disorders.   Many other symptoms and diseases not typically considered Parkinson’s were now seen as part of PD.    There have been a lot of studies of possible treatments that seemed promising, but the hope for a cure still seemed elusive.  In fact, one of the speakers at the WPC, whom I believe was Tom Isaacs, quipped that the cure was always 5 years away, no matter what the research said.

But something has changed since then.  In the last few months, researchers are coming out with reports that Parkinson’s does not start in the brain, but may actually start in the gut.  Many say the culprit in some cases may be microbiomes in the gut. WOW!  If this is true, scientists at Caltech say it may mean that PD can be detected much earlier and drug treatments can be designed to remove those nasty little bacteria that are causing problems in our gut and our brain.  This treatment may also be more effective because medications

271-smts-gutbrain-connection-news-web
Credit:  Caltech

can easily be absorbed in the gut, unlike treatments for the brain, which is protected by the blood brain barrier.  There has been much written about this, and it is probably confusing for most of us who are not researchers.   I am not a biologist, or a scientist, but I do understand that treating the cause much earlier, if it is in fact in the gut, is much easier that treating the damaged neurons in the brain, especially since symptoms don’t appear until it is way too late to reverse the damage.

Here is a quick look at some of the other announcements over the last few weeks:

  • Biomarkers  can be used to used to define disease subtypes.  “This precision-medicine approach will likely yield smaller, but well-defined, subsets of [Parkinson’s disease] amenable to successful neuroprotection.” according to Alberto Espay, MD, who conducted a study titled “Precision Medicine For Disease Modification In Parkinson Disease.
  • Last week the FDA approved Xadago   (Safinamide) for people with Parkinson’s disease (PD) who are taking levodopa but experiencing “off” episodes.
  •  Also last week, researchers from the University of New Brunswick    found that an extract from the brown seaweed Alaria esculenta can prevent this conversion and, therefore, could be useful in avoiding the onset of the disease or delaying its progress.”  Ok.  Does this mean we should eat more sushi?
  • A new study published in the Annals of Neurology suggests that redheads may carry a gene variant that increases the risk of both Parkinson’s disease (PD) and melanoma. Researchers have long known that having either PD or melanoma heightens the chances of developing the other condition, but it’s been unclear exactly why.  What if you are blonde and have had both, like I have???  I think this means I am in trouble….
  • The Food and Drug Administration finally gave approval for 23andMe to sell to consumers genetic tests and their accompanying health risk reports for up to 10 diseases, including late-onset Alzheimer’s and Parkinson’s.
  • And finally, the New York Times declared that exercise is good for us old people.

All kidding aside, it seems that the big breakthrough may just come in less than 5 years, which would make all of us very happy.

Thank you James Parkinson

ShakingPalsy1

On April 11, we will celebrate the birthday of James Parkinson, M.D., who published his groundbreaking essay 200 years ago in 1817 on what was then known as “the Shaking Palsy.”    His narrative reporting of six case histories is as readable as a 19th-century British novel, and has been called a “gem of the neurologic literature.” You can read the entire text here.

Last October, during Breast Cancer Awareness Month, I posted “Breast Cancer vs. Parkinson’s” to highlight the differences in approach to publicising these two diseases.  I am repeating it here because Parkinson’s Disease affects so many of us, yet does not get the PR that a “sexier” disease like Breast Cancer does.  We can and must do more to educate people about Parkinson’s, especially since the numbers of people affected are expected to climb rapidly in the coming years.

As a footnote to the blogpost, last month my daughter and I walked in a 5K for the Michael J Fox Foundation.  We had a great time, but the number of people who came and walked was probably less than a 10th of the number who walk for Breast Cancer.  And the same for corporate sponsors.  We need to do much better.

Breast Cancer vs. Parkinson’s

Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week.  Obviously, it was a week when I wished I had just stayed in bed and hid under the covers.  How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?

Much of the next six months remains a blur to me.  I underwent a lumpectomy and radiation for the breast cancer.  A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me.  All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.

Somehow I was able to come to terms with having breast cancer immediately.  My mother had it, my sister had it.  It is the disease that most women fear most.  And it is the disease that is talked about everywhere.  October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits?  It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive.   Celebrities talk with pride about recovering from breast cancer.  There are rallies and walks to raise money.  I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year.  We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held.  We were Champions in Pink!  Breast Cancer is fashionable.

But Parkinson’s is another story.   It was hard to come to terms with 4884e7c347f2b13936d46ca87475e3b6that diagnosis.  I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends.  It was something my friend’s parents had, but they were much older and didn’t move very well.  There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month.  I didn’t even know there was a Parkinson’s Awareness month until this year.  Parkinson’s events were not well publicized.  After all, who wants to go to an event where everyone is shaking, drooling and shuffling?  Parkinson’s is definitely not fashionable.

I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible.  I didn’t have time for a chronic degenerative disease.  I just had a tremor, so I tried to hide it.  And I kept trying, but after a while, people started to notice.  I thought that if I didn’t say anything, it didn’t exist.  So I did what my friends and I call the “Parkie hand-hiding strategy”.  You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.

But of course, that didn’t work and I was only fooling myself.  So why couldn’t I admit it to myself?  Why couldn’t I tell others?  It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”.  Once I started to write my narrative*, which only my therapist was privileged to read, things started to change.  I started to write about life with PD.  But only for other Parkies.  The rest of the world still didn’t need to know.  And then one day, I made a mistake.  I posted something meant for my Twitchy Woman Facebook page on my public Facebook page.  And the world didn’t come to an end.  Wow!  I was outed.  And it was okay.

So now I have embraced my PD.  There is a wonderful world of people in the Parkinson’s community that I have met.  The time I spent last month in Portland at the World Parkinson Congress was an eye opener.  I was able to meet some people who I have corresponded with through this blog.  I talked to doctors, therapists and researchers who valued my opinion.  I  spent time with new friends and old friends, looking for answers and camaraderie.   We have a common bond and we understand each other.  And we don’t all shake, drool or shuffle.  In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be.  But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.

20160921_095559
With my friend Clara, looking good with PD in front of Anders M Leines mural “This is Parkinsons”

Book Review: Brain Storms

IMG_0152-1I have been listening to books on Audible for a while now, usually when I am walking or driving.  Few have kept my interest like Jon Palfreman’s new book Brain Storms, The Race to Unlock the Mysteries of Parkinson’s Disease.  Unlike other audiobooks, I rarely had to back track to find out what I missed while distracted by something else.  The book was engaging, informative and written in language that a reader with no medical background could understand.

Palferman was diagnosed with Parkinson’s at about the same time that I was and at about the same age. He also seems to have had a similar trajectory in the progress of the disease.  He is a medical science journalist, and in that role, he oftened covered scientific discoveries leading to treatments and cures of chronic diseases.  Thirty years ago he produced a documentary film for Nova, The Case of the Frozen Addict, about drug addicts who had developed Parkinson’s like symptoms as a result of bad street drugs.   He is also a professor of journalism at the University of Oregon.  His diagnosis, like mine, initially led to denial, secrecy, depression and isolation.  He was determined to hide the disease for as long as possible.   I can’t imagine anyone shouting to the world that he has just had been diagnosed with Parkinson’s Disease.  After all, the image of Parkinson’s conjurs up an elderly person, shuffling with a stooped back, dementia and an obvious tremor.  This is not a disease anyone looks forward to having since we can only treat the symptoms.  There is not yet a cure or even a guaranteed treatment to slow down the progression of the disease.

Through the book, Palfreman confronts that image and turns it upside down.  He discusses the sea change that occurred when  Michael J Fox set up his foundation to find a cure now.  He interviews Parkies who have made it theirs life’s mission to confront the disease and live with it on their terms.  One example includes dancer Patricia Quinn, who developed a dance program to counteract her symptoms and continues to live well many years later.  He has also interviewed others who have deteriorated rapidly and even goes so far as to project what his future will bring as a result.

Palferman also talks abut the fascinating history of the disease, beginning with descriptions from the ancient Greeks, leading up to James Parkinson’s famous essay on the Shaking Palsy nearly 200 years ago.  He talks about how treatments were developed, and even chronicles the descendents of a family in a small village in Italy who were essential in helping to discover genetic markers for PD.  Because the book was just published, he goes into great detail on the latest research about repurposing drugs for other diseases that have been somewhat successful in reversing PD in limited trials.  This is exciting news that has been talked about all summer.  Because these drugs have already been FDA approved for other diseases, the approval process is shortened significantly, if researchers can get enough patients to conduct Phase III trials.

He ends the book with a bright future for those of us with PD as a result of the flurry of discoveries made in the last few years about PD and treatments for slowing down and ultimately reversing the disease.

And finally, this is a very personal story about living with Parkinson’s disease and how a chronic disease will change a person’s life forever.    That change can be positive, which is something I have heard from so many people with Parkinson’s.  Once we get throught the denial, we can move forward and live our lives fully.