Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.
We “Parkies” never forget the date that we heard the words.
“You have Parkinson’s disease. Progressive and incurable. But it is treatable.”
Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.
No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
Lesson learned: There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.
University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.
PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.
Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence. You can live well despite PD.
Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.
I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.
Our challenge is to find newly diagnosed Parkies and connect.
We are committed. We will find our way. We have so far.
Recently Margaret Tuchman joined an online Parkinson’s community at MyParkinsonsTeam.com, a social network for people living with Parkinson’s. Laura Crawford sent Margaret a welcoming note, some of her original artwork, and also spoke of how The Parkinson Alliance website was a help to her after she was diagnosed with Parkinson’s. We are very grateful that Laura agreed to share her story and some of her artwork here.
When people ask me: “What do you do?” I mumble and look puzzled. In my case, a better question would be: “Why do you do what you do”?
You see, in many key aspects, I’m no longer who I was.
I was born in 1962, and for half a century my life ran on what I believed were firm tracks. I loved to read and majored in Literature. For 15 years I did media relations for a telecommunications firm. In 2009 I opened a Design and Communications agency. There I wrote copy while my partner led the graphic side of the business.
Then one day in February 2014 I heard four little words — how can I say this in a way that doesn’t seem melodramatic and yet conveys the massive importance of the moment?— that flipped my life over like an omelette on the range:
“You have Parkinson’s Disease.”
Duh. It was sort of undeniable: I shook; the muscles on one side of my body were scrunched taut; I couldn’t smell a thing (which on occasion was a blessing); I cried for no reason; I fell asleep in front of a client (he was very boring).
With time, though, it became apparent that the truly fundamental changes were occurring in my brain.
Once my life was encased in books; now it is overflowing with markers, pencils, sketchpads and other paraphernalia of the arts. Instead of flipping the pages of a novel, I doodle, draw, and my hands are usually dirty with ink.
I don’t illustrate or draw to please, though that would be nice extra. I do it because I have to, as I free fall into this raw and surprising stage of my life.
Where I was very coherent and (blush) quite eloquent, I now bumble and look for words that sometimes are no longer there.
Yet, even if it were possible, I would not change this final stretch of my life (dopamine-eating monster inside me and all) for the one torn away by those four words.
I have found an undeniable pleasure in graphics and purpose and vibrancy (though that could just be the shakes) in the community of Parkie colleagues and their caregivers.
If you think it through, even if Parkinson’s is a life-sapping monster that disfigures us with time, everyone ends up a corpse at the end.
Given that cheery fact, at least I can say that at this very moment I’m thoroughly enjoying a cup of coffe while writing this. You have what you have, life is what it is… And moreover, I was given the opportunity to march this last bend of the road in the loving loving loving loving company of my husband and my peers.
Just listen to our collective footsteps resound in deep compassion of the human condition that we share.
Michael Norton shares fascinating research on how money can buy happiness — that is, when you don’t spend it on yourself.
“Giving to others gives us pleasure. It makes us happier people which in turn leads us to give more which makes us even happier and… you get the picture.” — says Brady Josephson who wrote “Want to be Happier? Give More. Give Better.” Likewise, in “Want to be Happier? Stop Being So Cheap,” author Jordan Michael Smith discusses the correlation between generosity and happiness. In fact, doing an Internet search on “happiness and donations” resulted in more than 1,200,000 articles that supports the good feeling you get when giving to a worthy cause.
The Parkinson Alliance is a worthy cause and one we both personally support. It is dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson’s, and we certainly welcome any donation. Each of us also support other organizations. For example, Margaret loves horses and she regularly supports Habitat for Horses. After watching Norton’s talk, we visited DonorsChoose.org and completely funded a project at a South Carolina school so that special needs children could have a day with therapy horses. Immediately we felt great and agreed, you absolutely can buy happiness!
Becoming “mindful” has entered the American mainstream as evidenced by the countless books and articles devoted to the topic. At its most basic, being mindful is being consciously aware of something in the present moment and accepting that awareness without judging it. Many claim that being mindful results in a variety of benefits. It apparently is good for our bodies, possibly boosting our immune system, and good for our mind, by helping to reduce stress and depression, and it can even tune out distractions and help us better focus. But can mindfulness possibly play a role in helping to treat Parkinson’s? In trying to answer this question, we came across a clinical study written by Barbara Picket, MD, M.P.H. and researchers at the University of Amtwerp in Belgium called Mindfulness Training among Individuals with Parkinson’s Disease: Neurobehavioral Effects.
For this study, persons with Parkinson’s took part in a study in which half of the group were assigned to a mindfulness-based group and the other half to a usual care group. Those involved in the mindfulness group had weekly sessions that included things like yoga and sitting medication. They were also instructed how to practice mindfulness at home. At the start of the study, all participants had a MRI of their brain. At the end of the study, each had another MRI to see if the MRI recorded any changes in their brains. Interestingly, for the individuals in the mindfulness group, there were changes that included an increase in grey matter density in the left and right hippocampus and other areas of the brain that was not seen in the participants in the other group.
The study concluded that “Even with advances in symptomatic treatment, there is a need for adjunct person-centered therapeutic approaches to help improve the well-being of people who are faced by this disease in daily life. … Mindfulness training, as taught by qualified and experienced teachers, may offer a more participatory medicine, empowering the individual by engagement to learn how to strengthen internal resources to help cope with chronic disease. Mindfulness training may help to restore some degree of self-determination in the experience of living with PD. This is in line with person-centered research that employs scientific methods that are holistic, integrated, and transdisciplinary.”
It is also noted that caution must be used in interpreting their results because of acknowledged limitations of the study. Even so, the study may demonstrate that a program of mindfulness training for people living with Parkinson’s can be beneficial. The study is available under the Creative Commons Attribution License. You can read it at Parkinson’s Disease, a peer-reviewed, open access journal, at http://dx.doi.org/10.1155/2015/816404.
If you’d like to try adding mindfulness to your day, there are several resources that will help get you started. Mindful.org has an article called 11 Steps Toward Daily Mindfulness . Its goal is to help you avoid going down the “same old mental ruts” and to instead become aware of where your attention is and “deliberately changing the focus of attention.”
In this Ted Talk, mindfulness expert Andy Puddicombe describes the power of refreshing your mid for 10 minutes a day.
In this TED talk, Pico Iyer talks about the insight that comes with taking the time for stillness.
Do you have Parkinson’s and practice mindfulness? Please let us hear how it is working for you!
– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance