I’m Not Done Yet

I may be a Parkie, but I don’t see the future darkly

Robert Nadel

For the last 2 months, I have been participating in a writing group run by StoPD. There are about 10 people with Parkinson’s in the group which is facilitated by a professor from NYU, along with the founder of StoPD.  The goal for the group is to eventually create a script for a play about living with PD.   Each week we had a different assignment, from Haiku, writing a scene for a play, to writing about how we want to be remembered (it started out as an obituary, but we all objected to that!). The last assignment was to write “I’m Not Done Yet” in whatever form of prose that we wanted to use. I really liked what Robert Nadel wrote, so I asked him to contribute it for this week’s blog post. Enjoy.

Sunrise by Sharon Krischer

By Robert Nadel, June 4, 2020

My future is bright

I can see the morning Light

I may be a Parkie, but I don’t see the future darkly

It has opened me up to helping others and share what I have learned over the past years since I was diagnosed. I have participated in clinical trials which may have some short term and long-term benefits to me and for those who have been newly diagnosed.

I have extensively researched the disease and know with confidence, that while right now there is no cure, I can continue living a modified yet active lifestyle. And perhaps in my lifetime there will be a cure or way of reducing the symptoms.

I for one will continue to challenge myself both physically and mentally

While the pandemic has thrown new barriers in our path, we have to look forward to a new way of doing things, I for one will continue to challenge myself both physically and mentally. for not doing so may lead to consequences of losing some of the ground I have gained on this uphill battle 

I just got off the phone with a high school friend whom I haven’t seen in perhaps 40 or more years and not spoken to in almost as long.(will call him S) What I found most interesting, is what I have taken away from our lengthy conversation, We have traveled very different paths in our lifetimes, Both of us have had more than one marriage, and have had many experiences along this train ride called life.

Where our paths have diverged is S has for the past 46 years had the same job, and not to say that it is a bad thing, S has been quite successful. Whereas my train has had many pauses along the way with several side trips and starts and stops.

“ Exercise? What do you mean exercise?”

But he did say something that sparked a response in me, He said he is forgetting words, So I asked S what are you doing for exercise?  “ Exercise? What do you mean exercise?”

I than went onto explain that Parkinsonism may tell your body and mind  to chill out, just relax and let things go, the disease is very nefarious and I can truly say the lesson that PD has taught me is the consequences of not constantly challenging mind and body. In some distorted way I can say Parkinson’s has had a positive effect on opening me up to seek out new ways to stimulate the mind and body.

So  S thinking about what he has been doing for the past 46 years, is on cruise control with rote learning and repetitive actions. Not putting anything new into the hopper of challenge

I see myself helping others to be happier and more secure with themselves and consequently satisfying ME!

Relating another phone call, I received a few days ago was from one of my former MDS doctors, who asked if she could pick my brain, as she felt I am always seeking out new challenges and answers to problems related to PD.

Her organization is looking to expand online offerings and we spoke about the various groups of people to whom it would be targeted and the stumbling blocks to make it work.

I see my path working with others will help me

Rereading what I have written, I believe I have said in as many words “What is Next” through the many twists and turns I have related, I see my path working with others will help me.

Communication While Wearing a Mask

By Sharon Krischer · 

Originally published by Parkinsonsdisease.net on May 26, 2020

In a conversation with Lauren Simmons of PD Buzz in Orange County, California, we discovered that we were both audiologists in our past lives.

We have both gone on to do other things, but we are still audiologists at heart. We talked about how much more difficult communication is when wearing a mask or scarf over our mouths, which can present a real challenge for people with Parkinson’s.

Read the rest of the post at Parkinsonsdisease.net

A Little Coronavirus Humor

We all need a little humor after being quarantined for so many weeks. Here are a few things to brighten your day.

Rob Tornoe, Philadelphia Inquirer

On a related note:

My favorite. I am waaaaay past day 32!

Raise Parkinson’s Awareness and a PD Hero from Australia

I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.

Michael J Fox

This Saturday, Stay Home and Help Raise Awareness for Parkinson’s!

On Saturday, April 11, 2020, at 11 am EDT, 10 am CDT, 8 am PDT, I’m taking part in an attempt to break the world record for the World Record Awareness for Parkinson’s! Please join me!  It is to raise awareness for Parkinson’s Disease that affects more than ten million people in the world today. How great would it be to be a part of a world record?
Let’s face it, we are all staying at home practicing social distancing but that doesn’t mean we can’t all come together from the comfort of our homes and support a great cause and stay active!
Will you help me spread the word and forward on to others so they may join in the fun? There is no fee, all you have to do is click on this link (https://movement-revolution.com/5liveregister) to register and count yourself in!  Mark your calendars!  And then join in a workout altogether on April 11th!  In just 5 minutes, we can change the world!
#5LIVE 

Sue Edge Inspires all in Western Australia

submitted by Amanda Woods

Sue Edge

My Parkinson’s hero is my friend Sue Edge. Since being diagnosed with PD in 2010, Sue has worked tirelessly to raise awareness of Parkinson’s in her home city of Mandurah in Western Australia, and her work has spread to Perth ( the capital) and beyond. After beating the feeling of hopelessness and despair when finally (after 2 years of misdiagnosis) being diagnosed, Sue became an inspiration to both the PD community and also the community at large. She has become a great advocate for PWP, setting up displays and talks to community groups to share her journey and promote awareness and education. She has suddenly learned to paint (apparently PD opens up the creative part of the brain) and has held two exhibitions at The Niche, head office of Parkinson’s WA…donating a substantial amount of money to the Parkinson’s nurses fund. Sue was Parkinson’s fundraiser of the year in 2018.

Sue spent almost a year knocking on the doors of every gym in Mandurah and surrounding areas trying to get someone to implement Boxing for PWP and finally succeeded with a small gym. Now there is a thriving boxing class with participants showing remarkable improvement in their PD.

Sue also has just published a children’s book called ‘Our BobbleHeaded Nanna’ which is a true account of her and her grandchildren’s journey with PD, Pre- and post- diagnosis. She has also started creative workshops for people affected by PD that have helped many PD sufferers and their partners get out of the house, create great pieces of art and have a positive and motivated group of people to share time with. She has become the go-to person for people having problems with their PD, people having problems understanding their partner’s PD, people thinking they might have PD etc., all the while having PD herself. She suffers from very bad ‘offs’ and has to take medication every 2 and a half hours to keep functioning….some times really struggling to keep going. But she still forges ahead …. making a positive difference. In May last year she produced a play about PD called “Kinetics”, which received rave reviews and really promoted awareness. It also won Best Director, Best Actress, Best Actor and Best Overall Production at the Western Australia Annual Finley Awards 2019.

She is the Australian administrator for the Facebook page Start Living Today PD. She also started ‘Shakey Lunches’ for couples who have one partner with PD. Initially started as a way to get care partners together to talk about challenges faced, it has developed into monthly get togethers with 24 people where PD is hardly spoken about, where positive experiences are shared, great fun is had.

Life is not about waiting for the storm to pass ….. it’s about learning to dance in the rain.

Author unknown
Team Edge

Sue lives by two quotes and makes sure that we, her friends, use them as well. She is always spouting these….“Life is not about waiting for the storm to pass ….. it’s about learning to dance in the rain.”  Author unknown.   And a quote by Michael .J. Fox. “ I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.”

In conclusion, Sue’s mission is to get the word out that Having PD is NOT a life ending thing …. it is a life CHANGING thing and  people with PD can still make a positive difference.

Sundays with Twitchy Women

How I Learned to be a Fighter

Sunday, April 19 at 10 am PDT, Jennifer Parkinson Iljin, another PD Hero, will discuss her 15 year journey with Young Onset PD as a single mom, creating StrongHer Women & Neuroboxing, Embarking on a 115 mile hike across Sicily for the upcoming documentary “Pilgrimage to Enlightenment” and a short Neuroboxing workout.  No boxing gloves required.

Registration required at  https://zoom.us/meeting/register/vJMrf-yrqDoo0Z8VOcPMBgXY4tpeqmFd6w

Taking a different path, Quarantine & Webinars

Here is my latest post published yesterday on Parkinsonsdisease.net

On the Road Not Taken

By Sharon Krischer · March 17, 2020

illustration from Parkinsonsdisease.net

“Two roads diverged in a wood, and I took the one less traveled by. And that has made all the difference.” – Robert Frost

Each person with Parkinson’s has a different story to tell. Some are diagnosed immediately, others take years.  Our symptoms and rate of progression will vary. So do our medications. It can be so overwhelming, especially when you have just been diagnosed.

I like to tell people to talk to more than one person with PD because no one’s story will be the same as yours.  As in Robert Frost’s famous poem, “The Road Not Taken,” each of us will have to make a choice. We can be passive and give up or do everything that we can to live well with it, recognizing that there is no one right answer for all of us.  continue reading here

Keeping busy while under quarantine

How are you coping with the enforced quarantine? Are you going stir crazy yet? Are your children concerned about every move you make? How about your partner or caregiver?

It can be difficult to maintain any sense of motivation while under “house arrest”. Apathy can take over if you are not vigilant. You need to exercise, but those naps that you take while watching tv or reading a book are so wonderful, why bother with exercise. And so the downward spiral begins.

Mr. Twitchy and I are binge watching a lot of tv, but finding it hard to get moving on those projects that we were saving for a rainy day. Well, the rainy day is here and we need to take advantage of it. We have boxes and boxes of photos that I have started going through. Remember when you actually used film and got duplicates photos when you developed it? And all of those scenery shots from who knows where? In the trash! 3 boxes down to 1 1/2. 17 to go. For you multi-taskers out there, go through the photos while binge watching Mad Men or Breaking Bad. You won’t feel that you have totally wasted the last 5 hours watching tv.

Webinars

Bored? Find a webinar to participate in. There are so many out there. Every Parkinson’s organization is hosting numerous web based activities. Even Twitchy Woman has gotten on board with our very first webinar on Sunday, March 22 at 10:00 am PDT. Kristie Scott, life coach and woman with PD will share what she’s learned so far living with Parkinson’s, and give us some helpful tips on coping with the challenging times we’re in.Learn about Kristie and her Evolution Cards on her website:  https://www.evolvewithkristie.com Evolution Cards sold on Amazon and Kristie’s website. (not required for the meeting).

For more information click here. Registration not required but please rsvp to Twitchywoman18@gmail.com so that I can have an idea how many will join the call. I hope that we will continue to have these webinars on a regular basis while we are all stuck at home. If you know someone who would be a great presenter, please contact me.

Need some ideas for activities? Someone posted this on Facebook and there are a lot of great ideas for things to do.

Found on Facebook

Avoiding the Corona Virus

I really did not want to contribute to the conversation flooding the internet about the Novel Covid-19 (Corona) virus, but given the chain of events in the last 48 hours, it is somehow unavoidable. No one, including Mr. Twitchy and me, has been able to ignore it.

Last week, we were in Washington DC for a conference. We flew home Tuesday night knowing that we had a very full schedule ahead of us at home.

And then the world collapsed. The Corona virus had spiraled out of control in several countries and was threatening more, including the United States. The Stock Market fell precipiticely, recovering partially one day and then falling even more the next. It is chaos out there and very scary on many levels.

On Thursday, two days after we returned home, we received an email from the conference that we had attended stating that two people who were at the same meetings tested positive for the bug. Since we don’t know who those people are, it was recommended that everyone who was there put themselves under voluntary quarantine for 14 days.

Image result for coronavirus meme
Paleontology US blog

We continued with some of our plans when we could keep away from other people and then suddenly, everything was being cancelled. From small meetings to huge sporting events. Nothing was spared. My daughters became concerned about our health and asked us to please, please stay home. I have been going out as little as possible, and am doing a lot of reading and other things that I needed a day home to do. So far, we are feeling fine and hope that by Tuesday, we will be able to go out freely again.

In the meantime, on our only short outing today, it was strange to go to the bank and see the bank tellers wearing surgical gloves to make transactions. At the drug store, a clerk, wearing gloves of course, was handing out packages of toilet paper to customers willing to pay double the usual price. We have been told that the shelves at Costco are bare, as are their online stores. The streets are empty. Restaurants are struggling. The unintended consequences of all of the cancellations affect every segment of society in unimaginable ways.

A trip to the market this morning was horrific. Huge crowds, no carts and nothing on the shelves. Everyone is in panic mode, stocking up for a very unsure month or two ahead of us.

How does all of this affect people with chronic illnesses, such as Parkinson’s Disease? When social distancing becomes the norm in order to make it harder to spread the virus, as it has in the last week, social isolation can become a huge problem for many of us. Unfortunately many of us fall into the older adult category that seems to be more susceptible to Covid-19. Fear can be a big factor. It can keep you from getting out of your house to go to the doctor, therapy and your much needed exercise classes. What about shopping for food? Going to a movie or dinner with friends? Socially isolating yourself can be devasting, bringing on depression and a worsening of our symptoms.

Those who are living in a facility, even though they are surrounded by other people, may feel totally isolated. Visitors are being discouraged because they could unknowingly have been exposed to the virus and could spread it to the infirm residents there. Several retirement homes have been the sites of the biggest numbers of fatalities in the US from Covid-19.

HOW TO PRACTICE SOCIAL DISTANCING WITHOUT LOSING YOUR CONNECTIONS

For some good tips for how to cope, the Davis Phinney Foundation published a very good blog today on practicing social distancing and avoiding isolation. Bottom line, your computer is now your best friend and will keep you connected to others in these dystopian times. You can read the blog here.

Another good article can be found on Everyday Health today. Explained: How Your Immune System Fights Off Coronavirus (and Other Germs) Doctors explain how your immune system protects you against viruses and other threats — and what you can do right now to help it in the face of threats like the new coronavirus. There is a lot of good information here for you to understand why this virus is moving so fast..

THE STRESS FACTOR

An even bigger problem may be the stress of living through all of this. As you know, stress can make your PD symptoms much worse. We don’t know how long this will last and when we will be able to return to our lives as they were before. It raises so many questions. Will we even be able to return to what we had before? What are we going to face financially? Have you prepared for an emergency situation like this? Don’t be afraid to ask for help and make sure that you have your support system in place.

One way we can all help each other is to set up a means for communication. Go to the Twitchy Woman Facebook Page and start a conversation. Don’t be afraid to ask questions. We will get through this together.