PD Heroes For Parkinson’s Awareness Month

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

This month, April, 2020, I will be sharing the stories of some People with Parkinson’s (PwP’s) who are heroes for many of us. In February I wrote about A Different Kind of Parkinson’s Hero, highlighting several women with PD who have Parkinson’s who are making a difference for others in their communitites.

Since then, I have received the stories of other “PD Heroes” who will be featured this month for Parkinson’s Awareness Month. As I said in February, I think there are two types of PD Heroes. The Parkinson’s Super Heroes who have gone above and beyond anyone’s expectations to accomplish things that would be extraordinary for someone without PD and the Real Life Parkinson’s Heroes who make an impact on others in their local communities in quite wonderful ways. We need both types of heroes in our lives to combat the old image of PD – the drawing of the hunched over old man, shuffling his feet and shaking. I won’t even reproduce that drawing here because we really want to forget that it exists. You will meet people here in the coming weeks who project a totally different image people with Parkinson’s. They are terrific people living terrific lives.

What I find interesting is that for all of our heroes is that their journey started much like everyone else. Many were misdiagnosed at first, often spending the first few months or even years after hearing those 3 dreaded words “You have Parkinson’s” in a state of shock. Some, like Jimmy Choi, it took several years and a wake up call in their lives, (he fell down the stairs carrying his son), to actually get out and start doing something to improve their own quality of life. Eventually, their passion for doing something that they enjoyed, led them down the path to doing something amazing. Today’s hero, Jon Pawelkop, who I would put in the Super Hero category, took his love of exercise and Rock Steady Boxing and turned it into an incredible journey that took him to every state in the US. This is his story, as shared by his wife, Pat Pawelkop.

Jon Pawelkop – Parkinson’s Super Hero

Jon Pawelkop, from Tampa, Florida, was misdiagnosed with essential tremor in 2014, and correctly diagnosed with Parkinson’s Disease in February of 2016.  The first year was one of coming to terms with what it could mean for him, a difficult time as he was always very active, athletic, and loved to live life to the fullest. He was very afraid of losing all that. 

Exercise and Rock Steady Boxing were the beginning of finding his way back. Jon pushes himself every day, to work hard, be active, and be a role model for others.

Jon’s Journey

In May 2018, Jon decided to promote Rock Steady Boxing and share its benefits with others by creating a personal challenge. Jon’s Boxing Grand Tour Fighting Parkinson’s was started. His goal was to visit a RSB affiliate class in every state, work out with the fighters there, and share a word of encouragement wherever possible. In the 13 months that followed, Jon completed his goal and visited more than 60 RSB affiliates, traveling to every state, and working out with the Fighters at a RSB class.  He did most of this while flying standby, not always an easy task! 

Stop #50 Hawaii
Jon is on the left wearing the orange lei

The last state was Hawaii, where Jon visited a class in Hilo, on the Big Island of Hawaii. He combined this trip with the World Parkinson’s Congress in Kyoto, Japan, which he and Pat attended together. He had the great privilege to help represent RSB while at the WPC in Japan, where he helped RSB coaches from Japan, Norway, Italy and the USA as they demonstrated their lessons for the WPC attendees. It was a great opportunity and a highlight of their journey.

Along the way, Jon also visited a RSB class in Ede, Netherlands, in conjunction with a previously planned vacation to Germany. He plans to continue to visit classes as wherever his travels take him. 

Make It Mean Something, MIMS

Jon was recently appointed as an Ambassador for the World Parkinson’s Congress 2022 in Barcelona Spain. He is excited to see where this new stage of his advocacy journey will take him. He loves meeting people who share his fight, and encouraging others to Make It Mean Something, MIMS, which he has certainly done.

For more of Jon’s story, and background you can reach Jon at jonpawelkop@gmail.com or Pat at patpawelkop@gmail.com Jon also has a short Ambassador bio on the World Parkinson’s Congress 2022 website.    
Facebook –   Jon Pawelkop (personal page), Jon’s Boxing Grand Tour Fighting Parkinson’s (group page)

Real heroes are all around us and uncelebrated.

Peter Capaldi

Who are your Parkinson’s Heroes?

Do you know someone who is a Parkinson’s Hero? I would love to share their stories here. Send stories and contact information to me at twitchywoman18@gmail.com.

Sundays with Twitchy Women

Don’t forget to sign up for our next Zoom meeting taking place on Sunday, April 5 at 10 am Pacific time.

Our guest will be the hilarious Dr. Maria de Leon, author of The Parkinson’s Diva. Wear your Diva bling and break out the Prosecco for our Diva Party. We will talk about maintaining our “Diva-ness during this time of social isolation, oops, I mean social distancing.

You will need to register from now on when we use Zoom for these meetings.  Click here to register for the Diva Party. 

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!

For the newly diagnosed

 Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.

One of the most satisfying things that I have done has been leading a support group for women with Parkinson’s.  We started meeting almost a year ago, beginning with a group of 13 that has grown steadily throughout the year.  Occasionally I have interviewed women at our meetings to get a more in-depth picture of their story instead of having a “gripe session”.  I have found that telling your personal narrative is very powerful, both for the person telling their story and for the audience.  By going more in depth, issues are often raised that would not normally come out.  It is interesting to see the “light bulb” go off when someone else identifies with something in the narrative.  This reinforces the fact that we are not alone in this journey with Parkinson’s.  Although each of us has a different trajectory there are many commonalities that bring us together.  Here is the story of a woman who was just diagnosed a few months ago.

Jane is an editor,  whose symptoms did not begin with a tremor, unlike most of the women present at the meeting.  She was diagnosed in September after going from doctor to doctor to find out what was wrong.  She had a bout of sciatica two years ago which was followed by dizziness.  She felt she was moving slowly and with increasing difficulty.  She went to many different doctors including a neurologist, cardiologist, audiologist and an ayervedic practitioner, and was put through many different tests, which all came back normal.  One doctor suggested that it might be PD, but there was nothing definitive enough so he dismissed the idea.   Finally a naturopath in San Diego recommended an EMG which is a neuromuscular test.  The results were abnormal, so Jane then sought a second opinion with a neuro-muscular specialist.

It took three months to get into a specialist.  In the meantime she had bunion surgery, which was necessary, but only made it harder to figure out what was wrong.  She felt confused and adrift.  She was distressed that she couldn’t move fluidly. She also noticed her handwriting was getting smaller, movement in bed was more difficult and movements involved with cooking  such as cutting and stirring were more challenging.

When she finally saw the new neurologist, he said he thought she had Parkinson’s.  By this time she had been doing some research on the internet and suspected that was the problem.  So when he dropped the P-bomb, she felt she was somewhat prepared for it.  She had a DaTScan which confirmed the diagnosis in September.  The movement disorders specialist that she was referred to was not the right doctor for her.  She felt the doctor was not interested in what she had to say.  She said “yes, you have PD” and then proceeded to give her instructions without listening to Jane.  She told her to exercise for an hour a day, 6 days a week.  As Jane said, she could barely move and felt that the doctor set the bar too high for her at that time.  She was very upset and felt overwhelmed.  The doctor gave her a Neupro patch and sent her on her way.

Jane went back to work.  The Neupro didn’t work at all.  She finally told the people at work, who were very supportive.  The interesting thing was that the younger people were much more empathetic than the older people who had a different view of PD.   Two days after her diagnosis, a friend referred her to an oncologist in the Bay Area who was diagnosed 20 years ago and is successful and thriving with Parkinson’s.  The conversation she had with him gave her hope and it was the most helpful thing for her.  Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.  It changed her entire outlook.

She was referred to our support group by a friend of a friend.  At the last meeting she talked to several women who gave her the name of another doctor, whom she made an appointment with.  The doctor changed her meds, referred her to someone for LSVT which is a speech therapy method for training your voice to be louder, and she feels that she is finally getting the right care that she needs.  Working full time is much easier now that she is feeling better.

Her recommendations for the newly diagnosed:

  1. The doctors should have an informational pamphlet to hand out with frequently asked questions and a list of local services for people with Parkinson’s
  2. Get a second opinion if you are not happy with your doctor.
  3. Find someone else with PD you can talk to.  A buddy who has had Parkinson’s longer   than you, who can answer questions, be a shoulder to cry on and just be there for you.

There are some resources available now.  Two of them are  Parkinson’s Diagnosis Questions from the Michael J Fox Foundation and For the Newly Diagnosed from the Parkinson’s Disease Foundation.  Both of these had input from people living with Parkinson’s, which is very important.   We should encourage our doctors to hand them out to newly diagnosed patients as a resource.  Some of us in the room were given no information when we were first diagnosed.   There are so many questions and we did not know where to turn to for answers.  There are also many local resources that should be compiled in a list to give to the newly diagnosed.  And finally, we talked about setting up a network of Parkinson’s Buddies to help the newly diagnosed.  After all, no one should go through this journey alone.

Some recommended reading for the newly diagnosed:

These are some of my personal favorites.  There are a lot of books out there, with many touting magical cures.  Please be aware of this when looking for a book about Parkinson’s.  There is no magic cure, but there are definitely strategies for living better with PD.

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

Always Looking Up: The Adventures of an Incurable Optimist by Michael J Fox

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition by Dr. Michael Okun

And for women:  Parkinson’s Diva by Dr. Maria de Leon

A Need to Help Others:  One Woman’s Story

Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles.  Tricia Low had pulled together the group to discuss issues related to Women with PD.  Tricia is amazing.  Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.

The first thing Trish noticed was that her handwriting started to look like her father’s.  She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts.  Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women.  So she never thought that she would get PD.  Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.

First she went to a local neurologist.  He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s.  The first doctor was not very positive.  He talked to her husband, not to her, in spite of the fact that she was a nurse.  He did not give her any information, so she began to look elsewhere.

She first went to Huntington Hospital, which was filled with “old people with white hair”.  There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s  and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it.  The first doctor said she would get used to it.  The second doctor disagreed, so she changed doctors.  He took her off the Requip and made some other changes.

In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley.  The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor.  So again she looked for another doctor.   She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.

It took about 5 long years to finally get to the right doctor, which has made a huge difference.  

Trish says there are  4 things we must do to cope with PD:

  1. Keep a positive attitude
  2. Exercise every day
  3. Advocate for yourself
  4. Always check for the latest information on the internet

She is always trying new things.  She goes dancing, she boxes to get out the aggression.  She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays.  She is a religious person and prayer is very important for her.  Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better.  Its a great way to keep going.  “I always tell people that I am a pretty package, but a mess inside.”

What makes her story so unique?  She did not expect to be fighting two different diseases at the same time.  She has had 4 DBS implants because she broke the first set!  She fell off a step-ladder and snapped the wires in half.  She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.

Her advice to the newly diagnosed:  each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you.  Exercise every day 30 minutes.  If you believe in God, or some other higher power, get close to them.

Finally, Trish says “what  keeps me fighting is I still have a  purpose to my life. One of my passions is  ‘Caring for people and helping  them along the way.’  So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD.  I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my
story.” 

   DJ Crawford (Trish’s Mom), Maryanne Moses, Trish Low, Zahra Ehssani, Sharon Krischer and Deanna Ahmed

At a loss

I seem to be losing things on a regular basis.  And not just my mind.  I keep leaving things at restaurants, at the gym.  Most of the time I am able to retrieve the lost article.  A scarf, a sweatshirt.  Other things are just gone.  I lost my Fitbit somewhere in Washington DC last week.  I will never see it again.  I miss the alarms on the Fitbit to take my meds.  And now I sometimes forget to take those too.

But the latest mishap occurred at the spa at my gym.   My back was bothering me after the long flight home, so I scheduled a massage.  It was wonderful.  I had put my rings and watch in the pocket of the spa robe and reminded myself to take them out when I got dressed later.  I was so relaxed after the massage, that I put on my  watch and then forgot about the rest.  I returned the robe to the spa and went home.  Later that evening I realized that I wasn’t wearing my necklace (also in the pocket of the robe)  I called the gym early the next morning and went later on a search mission, checking the pockets of the robes that had come back from the laundry.  No luck.  No, I am not the only one that this has happened to.  They said that most of the time, things show up within a couple of days.  But so far, nothing.

It is beginning to seem like I need a checklist to make sure that I have all of my belongings when I leave any place.  This was never a problem before.  At least not this frequently.  Is it the Parkinson’s?  Aging?  Actually, this reminds me of a story my friend and fellow Parkie,  Dr. Maria de Leon wrote about in her book Parkinson’s Diva.  Her story occurs after a massage too.

After a massage, she got dressed quickly and then  “As I was walking towards the Ladies Room, I felt a chill, which I promptly ignored;  after all it was winter and extremely cold outside.  As I passed through the corridor, I noticed all eyes were on me, which I ignored and continued to the bathroom.  I did wonder briefly why everyone seemed so fascinated by me today.  Upon entering the bathroom, I realized the reason.  I had forgotten to put on my blouse!  I was parading about wearing only my lacy red bran and leather jacket, which happened to be wide open.”

Maybe the moral of this story is that we should either forget the massage or find that we leave our brain on the massage table and suffer the consequences.  Now where did I put my keys??????

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