Writing your Parkinson’s narrative

Life is changed in an instant.  The ordinary instant.”  Joan Didion

One thing that helped me immensely to accept my diagnosis and to understand what was happening to me was writing my story.  With the encouragement of my psychologist, I sat down at my computer and started to write.  And write.  And write.  Me – the person who hated to write.  Once I started, I could not stop. 7 pages and 3100 words later, I was finished.  For a little while at least.

I started by writing stream of consciousness.  Eventually I went back and organized my thoughts and the narrative started to make sense.  It also helped to put everything into perspective.  It was an eye opener for me.  And it was the first step towards a healthier attitude about living with a chronic illness.  Writing down your thoughts can help separate the imagined from the real.  It is therapeutic to say the least.  And I wish I had done it much sooner after my diagnosis.

As you write, you will probably recognize the 5 stages of coming to terms with a chronic disease in your narrative.

  1. Shock.  I have what????
  2. Denial.  Not me.  It must be a mistake
  3. Anger.  It is not fair
  4.  Fear.  What will happen to me?
  5. Acceptance.  Ok let’s get on with my life.

Start at the beginning.  Your life was changed the minute you heard those words “you have Parkinson’s Disease”.  Actually, it changed before that when things started going wrong.  Writing your story, your narrative, can help you identify those subtle changes that just didn’t make sense at the time.  It can also help you determine where you are in the process of coming to terms with your diagnosis and help you progress to Acceptance.  You may back track at times.  Anger and Fear tend to pop up regularly as new symptoms appear.  Write down your feelings as you document the changes.

Not only will it help you to cope, sharing it with your doctor or therapist can be valuable as well.  How many times have you walked out of your doctor’s office and realize that you forgot to tell her something important?  If nothing else, you can make a list of concerns and questions for your doctor’s visit based on what you have written.

Some tips I found for writing your narrative on the internet from Hope for Women Magazine

  • Write Quickly
  • Write with purpose
  • Write privately
  • Write without rules

You may decide not to share your narrative with anyone,  but it will be there for you whenever you need it.
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Shoes……

I got this quote from my friend, and fellow Parkinson’s blogger, Dr. Maria de Leon, who writes about the importance of shoes in the life of a Parkinson’s Diva.  In fact, the logo on her website is a pair of red high heel pumps.  Many of us love our shoes, and hang on to those beloved pairs even though they are collecting dust in our closets.  You know the ones.  The sparkly high heels that you wore to your daughter’s wedding.  Those amazing strappy sandals, with the skinny 4-inch spiked heels that looked so great with your favorite dress. And those Manolos, Jimmy Choos, Pradas or Christian Louboutins

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Bye bye heels

that we spent a fortune on but can no longer walk in.  They sure made us look fabulous!  We just kicked them off under the table at dinner to get some relief and put them back on when we had to get up.

But the reality is that Parkinson’s and age have made those shoes more difficult to walk in.  So the time has finally come to part with those shoes.  And finally recognize the fact that we do have to make some changes in our lives because we just are not 25 anymore.  So the shoes are going to a resale shop, to be replaced by stylish 2-inch heels that don’t help make me look taller, but at least I can walk in them, safely and comfortably.

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Hello comfort!

Remember the stores that sold Orthopedic shoes?  All those ugly black lace-up shoes that our great-grandmothers wore.  They don’t exist anymore, thankfully.  They have been replaced by stores selling “comfort shoes” and some of them actually look good.  Because styles have changed so much, it is rare that we need to wear “dressy” shoes anyway.  A cute pair of ballet flats will go with just about anything.

So I bid a tearful goodbye to those shoes I can no longer wear and look forward to shopping for some fabulous, comfortable new shoes.  After all, a girl must look great in her shoes, no matter what height the heels are!

PD Boxing Packs a Punch

Find what moves you and fight for it.  Michelle Lao

Boxing coach Michelle Lao has written a guest column for Twitchy Woman about the benefits of boxing for PwP’s.  She has also created a short film about Boxing for PD titled On The Ropes:  Battling Parkinson’s Disease.  Several of the boxers that I work out with are featured in the film.  Click on the link below to watch.

It is incredibly ironic that a sport like boxing, often associated with being a contributor to Parkinson’s Disease, can also stop the advancement of it. There was always a strong correlation within the boxing community, that the constant blows to the head caused Parkinson’s. If the correlations are true, then the poison can also be the antidote. Boxing training places a heavy demand on the body which aides in re-establishing lost connections and building new ones within the neuronal circuitry. By learning a new sport, you are acquiring a new skill set that helps to increase neuroplasticity. With my PD fighters, I have seen countless mind body connections being made in boxing. These connections formed have slowed down the progression of Parkinson’s Disease. Here are the physical benefits that I have seen in my fighters:

  • Restoring loss of function in fine motor skills and gross motor movements.
  • Increase improvements in balance, coordination, gait, range of movement (flexibility), and proprioception (awareness of the body in terms of space)
  • Decrease in the slowness of initiating movement, in muscle tone (rigidity), and in frequency of involuntary movements (tremors)
  • Better sleep

Boxing can help improve cognition. Although boxing is a full body workout, it is also a cerebral sport. In my classes, boxing is used to sharpen the mind. My PD boxers have to be able to quickly adapt, predict, track and execute precision in movement and timing. When training, my boxers are constantly recalling combinations and patterns whether it’s by verbal or physical feedback. By engaging in these boxing drills, my boxers have shown significant cognitive improvements in the following areas:

  • Increase in executive function, memory and thinking
  • Improvement in verbal communication
  • Decrease in cognitive delays
  • Less confusion, more focus

I approach fitness more holistically. I believe that wellness creates a well-being. I find that my boxers have been able to find a community of people that they can relate to without having to explain the hurdles of their disease. Everyone is on the same playing field. PD boxing classes have helped my fighters manage their disease at an emotional level and the benefits are countless. Here are a few boxing benefits for emotional well-being:

    • Empowerment. You own the disease; it doesn’t own you.
    • Confidence. You know what your body can do for you and you can seize the day with it.
    • Cathartic. You can release all your stresses by punching it out.
    • Camaraderie. You gained a supportive network of friends who motivate and encourage you.
    • Independence. You no longer need to rely on others for help as much.
    • Improved quality of life. You are less depressed and can live a fuller life.

As much as boxing can be rewarding on a physical, cognitive, and emotional level, it also needs to be fun and engaging. If you do not find enjoyment in the movement program you participate in, then you will not benefit from it. Find what moves you and fight for it.

On the Ropes: Battling Parkinson’s Disease from Drastic on Vimeo.

It’s the little things…..

It’s the little things that are a constant reminder…..

The pill boxes next to my bed, in the kitchen, in my purse

The stiffness in my ankle when I get up in the morning

The shaky foot when driving

The arm that doesn’t swing properly

The sleepless nights

The smile that isn’t quite right

The internal tremors

The foot that doesn’t lift quite enough to clear the steps

Losing my grip on the tennis racket mid-swing

The anxiety that builds up when sitting still too long at the dinner table, at a meeting or even watching tv.

The difficulty just writing an address on an envelope.

It’s those little things that are a constant reminder that Parkinson’s is still there, even though my meds are working well.  It’s those little things that are not necessarily “just getting older”, but may be signs of changes in Parkinson’s.  It’s those little things that remind me to cherish every day and enjoy life, because someday those little things may become bigger things unless a cure is found soon.

200 years after James Parkinson defined the “Shaking Palsy”, we are still looking for The  Cure.  Let’s not wait another 200 years.  Current research seems to be getting closer to more effective treatments, and maybe even the elusive cure.   This month is Parkinson’s Awareness Month.  Do your part and get the word out, advocate for PD research, educate others about living with PD.  Together, we can help to find the cure.

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#UniteForParkinsons           #Together4PD

 

 

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

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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.