Yes, Wonder Woman really exists and she looks like Jen Parkinson

Our last name is Parkinson’s, isn’t that why you have it?

Jen’s 5 year old son

Jennifer Parkinson, yes, that is her real name, is a role model for everyone with Young Onset Parkinson’s Disease (YOPD) and for those of us who are older with PD.  Her story is inspiring,  She is tall, young, beautiful and athletic – Gal Gadot watch out!  And she is the perfect example of how to manage your life while living with Parkinson’s Disease.

We had a chance to meet on Friday morning before the Davis Phinney Foundation‘s Victory Summit in Pasadena, California, where she was scheduled to speak later that day about Women and Parkinson’s Disease.  We initially met almost 3 years ago at a conference sponsored by The Women & PD

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Sharon vs Jen

Initiative, which is a program of the Parkinson’s Disease Foundation (now the Parkinson’s Foundation).  Since I was taking boxing classes and Jen teaches boxing, we were asked to give a boxing demo to the other women who attended.  I am the short one in the photo!

On Friday, Jen looked great, no visible tremors or other signs of PD.   Listening to her story, it is hard to believe that this person sitting in front of me went through so much hardship with PD.  Diagnosed 13 years ago at 29, with symptoms that started soon after her son was born, life was not so good.  Jen had a difficult pregnancy, and 6 weeks after her son was born, she noticed a tremor in her right hand.   Even though she was trained as an RN, she never thought that it was PD.  When she went back to work, the shaking made it difficult to work with patients, her writing became illegible, her foot started to shake, making driving difficult, and then her blood pressure started dropping and her heart rate at times went from 30-180.  It was not long before she had to stop working.

“Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”

After 2 years of seeing numerous doctors in search of a diagnosis, a visit to an endocrinologist finally put her on the right path.  He sent her to a neurologist that she   worked with at the hospital, who finally diagnosed her with PD.  He put her on Amantadine to see if it would help and said to her:  “Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”  Not what she wanted to hear at age 32, with a 2 year old and 5 year old.  He gave her no information, no support groups, nothing about diet or exercise.

She stopped working, went on disability and then got divorced.  She was facing life as a single mother and her symptoms were getting worse, with freezing episodes 2-3 times a day.  She started using a rescue drug that was an injection, but could not administer it to herself since she was home alone.  She often had to wait out the freezing episodes.

That is when she heard about Rock Steady Boxing.  At the time it was only offered in Indiana, so she called a local boxing gym and started training there.  She was training in a regular class with the guys who were getting in the ring.  It was incredibly intense, especially since Jen was the type of person who signed up for the gym but never went until it was time to cancel the membership.  She felt immediate results from the boxing.  She felt good on the days she went to class, and terrible on the other days.

Jen eventually helped set up Rock Steady Boxing with a friend in Costa Mesa, a 2 hour drive from her house.  Soon after, a boxing gym opened up near her.  She went to a class which was taught by her now business partner, Josh.  They eventually opened up a Rock Steady Boxing, and went from 14 to 90 people in a short time.  But they soon realized that they needed more than just boxing classes.  It had become clear that a support resource for people with Parkinson’s and their families was needed, with other services besides boxing classes.  And they wanted to open it up to people with other neurologic diseases.  2 years ago, on September 12, 2016, Jen and Josh opened Neuroboxing.  Today they now have 5 locations and also train other trainers to teach neuroboxing.  All of this happened in 2 years.

I asked Jen how she feels.  There are times that are not great, but most of the time she is feeling good.  Her children don’t remember a time that she did not have Parkinson’s.  They remember when she could not get out of bed and when they used to have to help her.  When her son was 5, he once asked if he was going to have Parkinson’s too.  He said:  “our last name is Parkinson’s, isn’t that why you have it?”

When asked if she knew what caused her PD, Jen said that she was in a car accident several months before her symptoms started.  She started having some cognitive issues soon after.  Jen later discovered that 4 other nurses she had worked with at the same facility all have PD.   The nurses are wondering if there was something in the facility that  affected all of them.

Although I had to leave before Jen’s presentation later that afternoon, I heard that she was terrific, inspiring and a true role model.  Our Wonder Woman, Jen Parkinson continues to amaze.

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DC Comics Wonder Woman

 

Thank you to Medtronic, one of the sponsors of the Victory Summit, who arranged for me to meet with Jen at the Summit.  While Jennifer does not have DBS, it has been very beneficial to many other patients with Parkinson’s and Medtronic has a line of DBS systems.

 

Desperately Seeking the Right Information

Without getting too bogged down with real “statistics,” a typical diagnosis of Parkinson’s takes 1-3 years from the onset of symptons.  At that point, the doctor often provides a prescription,  a return appointment in three months and not much else.  The newly diagnosed, probably in a state of shock,  is not only in no condition to ask questions, but has no idea where to begin looking for information

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Those of us who are patient advocates meet many other People with Parkinson’s (PwP’s) who have had exactly this experience at the time of their diagnosis; most of us have had it ourselves.  While there is currently no cure for PD, we know that (1) there are a host of things PwP can do to continue to live well, and (2) the sooner thePwP learns of these things the sooner he or she will be able to do so.   These include, among others, medication, physical therapy and exercise.  And more exercise.  And beyond that, exercise.  Did I mention exercise? Once a new PwP enters this world he will learn that there are a huge number of people who have been living with PD  for years and are living activeproductive lives while simultaneouly fighting the progression of the disease.

 

One of the primary goals of patient advocates — one of the goals for writing this blog — is to reach out to Primary Care Physicians and Neurologists (directly or through their patients) to encourage them to ease the shock of the diagnosis and give more information to the patient at the outset and to encourage the patient to ask questions.  It would be a huge step forward if the medical community only made itself more generally aware of the already available lists of Frequently Asked Questions (FAQs) regarding Parkinson’s (see below).

An incomplete list of what patients advocates talk to each other about of things we would like to see made standard parts of the initial diagnosis includes:

1.  Making immediate referrals of patients to a Movement Disorders Specialist (MDS) (rather than to a general neurologist).   An MDS receives additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable than a general neurologist about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  Providing materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, American Parkinson’s Disease Association (APDA), local support groups or organizations, and other resources available for the patients.  These FAQs and other materials can help set the newly diagnosed on a better path to help protect and even improve their quality of life early in the process; the sooner a PwP can take action, the better off he or she will be.

3.  Scheduling a follow-up appointment within a month and encouraging the patient to bring along someone to listen and to help ask questions.

4.  Connecting the newly diagnosed PwP with a patient mentor who can talk to him/her on a personal level about living with PD.   Informally, this could be another patient in the community who is a good role model for the newly diagnosed Parkie.  In addition, several organizations have Patient Mentors (or Ambassadors) who are comfortable in this role and are happy to help.  The purpose is to meet casually and explain — and demonstrate — in a casual lay setting that the PD diagnosis is not the end of the world; it’s not even the beginning of the end of a quality life.

5.  Encouraging them, above all, to start moving.  What seems to be a universal truth is that exercise is the best medicine to combat PD.  Of course, the amount and extent of exercise will have to match the PwP’s overall health an fitness.  But that is fine tuning. An unquestionable first, or at least primary, step must be to get as active as one can as soon as one can.

Until the medical community formally embraces these standards, it is up to us in the lay community to make this information available.  NO newly diagnosed Person with Parkinson’s should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared much sooner for dealing with their life with Parkinson’s.

 

On a totally unrelated note, I started reading PD blogger, Tim Hague’s new book “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”.  I am about 1/3 of the way through the book and really enjoying it.  I hope to review it in the next few weeks.

Thank you Alan Alda

I decided to let people know I have Parkinson’s to encourage others to take action. I was Diagnosed 3 and a half years ago, but my life is full. I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving!

Watching Alan Alda’s interview on CBS this morning was inspiring and uplifting.  Mr. Alda could possibly be the best celebrity spokesperson, after Michael J Fox, for getting the word out that Parkinson’s is not a death sentence.  In a 7 minute interview, he covered so much of what my fellow bloggers and I have been writing about, and the most important message he gave is to “keep moving.”  I can’t repeat that message often enough, because it has worked so well for me and many other Parkies that I know, for the last 10 years.

Watch his inspiring video here:

https://www.cbsnews.com/video/alan-alda-reveals-parkinsons-disease-diagnosis/

Alda insisted that his doctor test him for Parkinson’s after reading an article about how one of the early signs of Parkinson’s is acting out dreams, which he was doing.   One of his first symptoms a short time later was a twitch in his thumb.  His reaction was not fear.  He wanted to help his family understand the disease and stressed that each person with Parkinson’s experiences the disease differently, even from day to day.

He sees PD as a puzzle to be solved.  You have to figure out the pieces of the puzzle that work for you to carry on a normal life.  It is a challenge that you must meet and you have to find a way to approach it.  He enjoys solving puzzles, something that I enjoy as well.

Alda approaches life with enthusiasm and hopefully will inspire others to do as he does:  keep on moving.  He boxes 3 times a week, plays tennis twice a week, and marches to Sousa music.  He says that marching to music is very powerful for PD.

Most importantly, he wants to get the word out that Parkinson’s Disease should not be feared and that there are things you can do to live well with PD.

“… I think because I’m sort of well-known, it might be helpful to people to hear the message that there are things you can do. You can learn about things and not follow quackery, but find out what real science is coming up with. That helps. It helps to keep moving. It helps to move rhythmically,”

I hope that Mr. Alda will consider coming to the World Parkinson’s Congress next June in Kyoto.  His message of hope is powerful and it needs to be shared with the Parkinson’s community and with the world.

Has it really been 10 years? Where did the time go?

Ten years ago, I broke my left ankle.  Ok, so what does that have to do with Parkinson’s?  Not much, except that a few weeks later, my right foot started to twitch.  It wouldn’t go away.  I thought that I have done something when I fell to cause it, but that was not the case.  The fall and broken ankle were apparently a trigger for my Parkinson’s symptoms to suddenly appear.  But was it so sudden?  No, there were signs at least 6 months before, but they were transient and seemed like nothing to worry about.  But the tremors after my fall were no longer transient and it was time to see the doctor about it.  My wonderful internist, Dr. T, prescribed Xanax, which didn’t do much for the tremor, but I slept well for the first time in months.  He says that he knew right then that I had PD, but did not refer me to a neurologist or Movement Disorders Specialist (MDS) at that time because of my broken ankle.

I was diagnosed with a Parkinson’s like tremor, given medication and told to come back in a few months.

Fast forward six months when I was diagnosed with Breast Cancer.  Fortunately for me, it was barely Stage 1.  I was scheduled for a lumpectomy and radiation.  All of this made the tremor worse, it had now spread to my hand.  After I had a breakdown in his office, Dr. T send me to a Neurologist.  That, unfortunately, was the wrong move.  I was diagnosed with a Parkinson’s like tremor, given medication and told to come back in a few months.  No information, no reassurances, nothing.  How many of you have had this experience?  You go to a Neurologist or MDS who gives you a diagnosis and then leaves you to suffer in total ignorance, just when you need the support the most.  If I remember correctly, my husband, Mr. Twitchy, was at work, so I had to go it alone.  There I was – in total shock – with nowhere to turn!  It was defiinitely not the way I wanted things to go.  It went from bad to worse with this doctor, so six months later Dr. T referred me to a MDS, who gave me the tools to educate myself about Parkinson’s and took the time to answer all of my questions. 

To this day, I think the Neuro was trying to be gentle with the diagnosis because of my surgery scheduled for the next week.  Think how much better would it have been for me if he had give me some information on PD, support groups, and a return visit within a few weeks just to make sure the diagnosis had sunk in and to answer any questions I had.

10 years is a long time to have any health issue.  I am truly grateful that I am doing very well after all of this time.  I am on the right medication for me, exercise almost daily and pursue many activities that I enjoy, one of which is writing this blog.  One of the most satisfying things that has happened, however, is the opportunity to connect with other PwP’s everywhere.  I have met a lot of smart, amazing people everywhere who are role models for me.  Finally, I have been able to do things that I never dreamed of.

So for my 10th anniversary with Parkinson’s, in addition to the fantastic meeting with Jimmy Choi a couple of weeks ago, I was interviewed by The 2 Mikes:  Michael Quaglia and Mike Achin, DJ’s dd4e-0d77-4d64-a6cf-e56cf0d9e5a6.jpgon Radio Parkies Web Radio.  My interview was aired last Saturday and is now available to stream here.  I come on at about the 20 minute mark, and make sure you listen until the end (past the song Hotel California).  You will hear most of my story about living with Parkinson’s Disease for the last 10 years.   I also think you will enjoy listening to DJ’s Mike & Mike.   They sound like a lot of fun and I hope to meet them in person sometime soon.19959369_1897363027187099_2045173785568238135_n

 

An Evening with Jimmy

No matter what you are faced with, if you make your body healthier, you are going to feel better.  Jimmy Choi

On a perfect Southern California evening a few days ago, Mr. Twitchy and I had the priviledge of hosting American Ninja/PD Warrior Jimmy Choi at our home, with the help of Alex Montaldo and Roberta Marongiu from StopPD, who co-sponsored the event. Over 30 fans with Parkinson’s came on short notice to meet Jimmy and hear about his journey from Parkinson’s diagnosis to Ninja Warrior.  They were not disappointed.

Jimmy Choi was diagnosed with PD at 27 and basically denied that he had this “old person’s disease” for 8 years, until he had a wake up call.   He stopped exercising because of the diagnosis, had gained over 50 pounds and was walking with a cane for balance.  This former athlete was not in good shape.  Parkinson’s was taking over his life.

This was definitely not the person who was sitting next to me.  The Jimmy Choi I met was musclebound, moving easily without a cane.  Confident.  Knowledgeable.  What changed his life so dramatically?

One day after he lost his balance and fell down a flight of stairs while carrying his son. He realized then that he had to do something to turn his life around.  He was becoming a danger to his family and he could not let that happen.

He started slowly, just walking,   First one block and then two, gradually increasing as his energy levels improved.  Eventually he started working out with a trainer.  He had started to educate himself about Parkinson’s and changed his diet.  Then, one day he boarded a flight for a business trip, and found a copy of Runner’s World that someone left on his seat.  There was an article in the magazine about a person with Parkinson’s running a marathon.  That was the “aha” moment that he needed.  He came home and entered his first 5K race.  Then a 10K race.  He quickly moved on to 1/2 marathons and then finally, marathons.  He has run over 100 1/2 marathons and 15 marathons since 2012.  His weight came down, he no longer needed the cane and eventually was able to reduce his meds because of all of the exercise.  His balance improved along with his gait.  He is living proof that exercise is the best medicine for PD.

All of this eventually led to his participation in American Ninja Warrior (ANW) competitions.

 

In the video of my interview with Jimmy, he tells his story and explains how he got involved in working with the Fox Foundation, (for whom he has raised over $250,000,) and ANW.  I think you will find him very inspiring and motivating.

My dear friend and PD pal, Sandy Rosenblatt came out of PD forced retirement to record and edit  this video which shows how amazing and inspiring Jimmy is.

 

Following Jimmy’s talk, we participated in PushUps4Parkinsons and in an obstacle course set up by StopPD.  Thank you to Jen Heath, who brought the project to us and created the video.  Watch Jimmy doing his pushups with first his daughter, then Alex Montaldo, on his back.  He is one impressive man!