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!

 

 

 

An American Ninja PD Warrior

 

Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.   Jimmy Choi

I am not a fan of Reality TV.  The closest I came was when my daughter was designing clothes and we watched Project Runway together for several years.  At some point, we both became bored with it and stopped watching.  Every season, every episode followed the same formula.  I have watched Top Chef a few times, mostly on airplanes when there is nothing else of interest, and guess what, it followed the same exact formula, just substituting chefs for fashion designers.   Nothing original in these shows.   Is there a difference between “The Voice” and “America’s Got Talent”?  I could not tell you, except that Simon Cowell seems to be everywhere.

Tonite, I watched American Ninja Warrior (ANW) for the first time because of Jimmy Choi.  If not for him, I probably would have avoided it completely.  I am sure that so many others with Parkinson’s watched for the first time, too.  Jimmy Choi’s second appearance on ANW was a reason for us to come together and celebrate.Image may contain: 1 person, outdoor

So who is Jimmy Choi?  An inspiring father of two who was diagnosed with Parkinson’s Disease at age 27.  One day he came across a magazine article about a person with PD who was running a marathon.  That article motivated Jimmy, who by that time had gained significant weight and was walking with a cane, to run a 5K race.  Then a 10K race, 1/2 marathon and eventually full marathons.  It literally changed his life.  He lost weight and his PD symptoms became less severe.  Jimmy became an inspiring model of the positive benefits of exercise for a person with PD.  All of this led him to become a spokesperson for the Michael J Fox Foundation.

Tonight, he is appearing for the second time on American Ninja Warrior in an effort to spotlight the need for a cure for Parkinson’s.  Last season he made it to the regional trials in Kansas City, but fell in the middle of the course and could not complete it.  Jimmy was a fan favorite, and was brought back by ANW to try again this year.

We watched, cheering him on through the first two obstacles, watching his tremor become more visible as he became more stressed by the tasks at hand.  At the end of the third obstacle, it became clear that his tremor and weakend grasp were going to win this time.  As he said “Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.”  Jimmy fell into the water as he tried so hard to reach that last ring.  We felt like we were falling into the water with him.

The thing that most impressed me was how hard Jimmy worked, inspite of having PD, to get to this point.  He had a mission – to stop making excuses and take control of his life when things were not going well.  As he reached eached milestone, 5k, 10k, etc, he set new goals.  He was not content with staying in one place.  He had to keep working harder and harder, eventually becoming our American Ninja PD Warrior.

Jimmy did not fail last night.   He inspired so many others watching him to get moving, to improve their lives while living with Parkinson’s.  And for that, we thank you Jimmy.