Soap Box

Blog seems like such a weird word, like Blob. It is the highway that I am following into the 21st Century though.  I can use it as one would a wooden soapbox in the public square of days gone by.   

In my opinion, the electronic age does not allow for identifying who is the audience it goes to, or often, even the speaker.  A lot of this form of communication is hidden in the shadows.  Yes, Zoom helps see the other members of our communities, but the barrier of the screen-only connection leaves other human senses wanting – touch, smell, sound, sight. How is this person presenting herself?  How can I determine if she is confident, competent, afraid, maybe, unsure?  

Electronic communication has brought us instant knowledge for our left-brain processing. Often times it’s a good thing, but this left-brain processing is out of balance with the rest of the brain, the right side, and our nervous system and senses that are not ready for the rapid processing of information that is put in front of us on a daily basis.   

I don’t believe that we, as human beings with the brain and nervous systems that we currently have, have evolved rapidly enough physically for such an on-slot of information from AI – timely information, maybe real, maybe not so real.  

Well, ahem, let me step onto the wooden box in the public square and begin.  

I am putting together this website and workshops in the spirit of hope for people who have been diagnosed with Parkinson’s disease.  I have heard the disease described as a “boutique disease” as, apparently, every person has a unique experience of the disease, and we can progress at different speeds. The saying goes: “If you know one person with Parkinson’s, you know one person with Parkinson’s.”  Perhaps that is why diagnosing the disease can be difficult.  

A hope for a future where Parkinson’s disease has been “taken apart” because we took a part in understanding and ending Parkinson’s is close.  Recent research has introduced finding biomarkers of the disease before it is diagnosed. Deep Brain Stimulation has proven to be an effective way to quell symptoms and improve the lives of people, like myself, with Parkinson’s. I believe that research is at a point where we can realistically hope for a cure and/or a slowing of progression through new medications and administration of medications.    

It is important at this time of chaos and darkness that research continues according to scientific standards and follow the International Organization for Standardization (ISO) and the World Health Organization (WHO) protocol. It cannot be tolerated if quality of research is interrupted of ceased by an administration that doesn’t understand or does not believe in proven cures for diseases of the past. We stand on the shoulders of those who went before us in dedicating time and energy to participate in research trials and the people with Parkinson’s who are participating in research trials now. We owe them and the people conducting the research trials a debt of gratitude, not fear of losing what has been accomplished so far due to ignorance. The people with Parkinson’s and their families deserve better.  People who may be diagnosed in the future need to be able to count on us to defend research into the cure for Parkinson’s. Let’s not let them down.  

Workshop Goals  

One of the goals of this series of workshops is to help identify how to create a calm, quiet space and be able to focus on creative tasks at hand. Not very easy to do with a lot of the cacophony in the modern world.  I know that I have become used to and want the stimulation of television, radio, iPhones, and computers to keep my mind busy.  I am learning the merit of quiet, focused workspaces and staying in the moment – being mindful - to focus fully on the creative project I am working on. The right side of my brain thanks me for the conditions that allow it space to work too. The blood flow to that side of the brain increases during the creative process and both hemispheres of the brain work together.   

We need to let down and laugh as well. For me, humor, sometimes really irreverent humor, has been a healthy coping skill for the 10 years I have been facing Parkinson’s disease.  The workshops all encourage lightness of mind and heart. The T-Shirt, Masquerade, and Examining Emotions workshops encourage silliness and play in the group as well as learning and introspection of the symptoms of Parkinson’s.    

Since my diagnosis, I understand that Parkinson’s disease is not funny or humorous.  It is a condition that robs people of the functioning of their body and mind, and it is a serious, not (yet) a curable condition.  It is a daily challenge to go about your life while the simple tasks that before the diagnosis were easy to accomplish have become difficult. I don’t mean to diminish the seriousness of Parkinson’s to people with Parkinson’s and their families with the lighter content of some of the workshops.  Humor has been an ally for me in the experience of having Parkinson’s disease and collective activities using creativity are a respite from the struggles of living with Parkinson’s disease.  

The saying goes that “angels can fly because they take themselves lightly”. Let’s work together toward the light of stillness and being well despite the dance with Parkinson’s.    

Take part so that Parkinson’s can be taken apart.  

Bless all my brothers and sisters with Parkinson’s disease.  

I’d better get off this soapbox before I fall off.