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:

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!




Has a real cure been found for Parkinson’s Disease?

You may have seen the news this week about the latest “cure” for Parkinson’s Disease.

“A cure may be on the horizon for Parkinson’s as scientists have found an experimental drug can slow down its progression and stop symptoms.

NLY01 has been called ‘amazingly protective’ as preliminary trials showed it blocked brain cells from dying.”

Researchers at  Johns Hopkins University  are optimistic that the drug NLY01 will go to clinical trials on humans later this year.  The drug, which is similar to those used to treat diabetes, was able to slow Parkinson’s progression and ease symptoms in mouse trials. We have been hearing a lot in the last few years about repurposing diabetes medications for Parkinson’s Disease, so this new drug trial seems to be a logical next step in the development of a drug specifically for PD.

Should you go out and scream from the mountain tops that the cure has been found? Probably not yet.  But this trial gives us reason to be cautiously optimistic.   Researchers are investigating so many different angles to delaying or stopping the disease, that at least one of them may just be what we have been waiting for.Compound Similar to Diabetic Medications Slows Parkinson’s Progression in Mouse Study

Will NLY01 work for everyone with PD, no matter what stage they are in?  That is a question that still needs to be answered with the upcoming clinical trials.  But if this new drug can really stop PD in its tracks for those who have been newly diagnosed, it will be a game changer.   While Parkies have already shown that we can lead productive, healthy and long lives, if NYL01 actually delivers on its potential, it could make that better, easier and who knows, maybe even cheaper.

Fingers crossed (or whatever works for you); we’ll just have to wait and see.

If you are a science geek, you can read about the study here:  “Block of A1 astrocyte conversion by microglia is neuroprotective in models of Parkinson’s disease,” which was published in Nature Medicine.  For the rest of us, click on NLY01 instead, which is written in language that most of us can comprehend.

Is There Anything Good About Living With Parkinson’s? These Women Say Yes!

I’m the fittest I’ve ever been, healthiest, started a coaching business, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses.  Jackie P.

Several years ago, on a Thanksgiving blog post, I wrote about things to be thankful for with PD.   Many of the “things to be thankful for” were lighthearted.  But some readers did not get it.  One person responded “how could anything good come from this terrible disease”.  For me, a positive attitude has helped me get through the past 9 years while living with Parkinson’s.

Recently, on a PD Facebook page, someone asked for members of the group to share something positive that they have done, learned or discovered since they were diagnosed with PD.  For many people, it may be difficult to see anything positive about the diagnosis, such as that person I mentioned.  However, the response to her question was amazing.

There were many wonderful, honest answers, some of which I will share with you.  Very few answers were the typical “shake and bake” answers.  The readers dug deep and there were some common threads throughout.

Probably the most important thing is the friendships that have been made because of Parkinson’s.   Having friends who understand your life with PD is priceless.  These are people who understand how you are feeling, without even having to ask.

Coming in a close second is being more aware of what is important in their lives and making changes appropriately.  That may mean spending more time with grandchildren, doing things on their bucket list, setting boundaries and learning to say “no”.

Finally,  quite a few mentioned having more confidence in many ways, to speak up when with friends, at work, in public places.  They are able to challenge themselves and try new things.

I think that having Parkinson’s allows us to see the world differently.  It also gives us the chance to reinvent ourselves, over and over again, as the disease progresses.  Many of us are doing things now that we never would have imagined doing. Why not try that boxing class and see what the buzz is all about?  You have a sudden urge to play an instrument?  Go ahead and do it.  It is good for your brain.  Same for learning a new language.  Learning new skills can help reconnect some of the neural pathways in your brain that have been damaged by PD.  The most interesting thing to me is that so many of us have found new interests, often showing creativity in the arts where there was none before.  Is it the added dopamine that we are taking? Or the lack of dopamine?

Because many of us are no longer working, we now have more time to do those things we have always wanted to do.  Mr. Twitchy and I have been traveling a lot, mostly because we have the time, but more importantly, a future with PD is so uncertain that we want to get in as much adventure as we can now, while we can enjoy it to the fullest.

So here are some of the answers in response to the question.  Do you see yourself in any of these?  Can you think of other good things that have happened because you have Parkinson’s?

  • I have met so many wonderful people, challenged myself and achieved things I would never have done before, I enjoy and appreciate the little things in life so much more, I live in the moment and know that life can still be good! 😀
  • I would say it’s a wake-up call and forces one to face facts about their life and take stock. Time to make changes and let go of some things and nurture others. Also since exercise is the one real medicine that can change the course of this, a lot of the future is in our control. Get moving! 🚴‍♀️
  • Appreciate each second and reaching out to Face Book friends; priceless
  • I no longer moan about emptying the dishwasher; just appreciate the fact that I still can.
  • I know I’ve become more empathetic, sympathetic, more caring, more appreciative, more loving, to name a few. You don’t get it, until you get it!
  • I have become more patient with other people and have been grateful when they are patient with me. I started a support group and joined Rock Steady boxing🥊 and through those two groups have developed deep friendships and gotten to know people that I can’t imagine my life without. I also found out what a caring man my husband is. I am also learning to depend more on God.
  • For myself I go to the Delay the Disease exercise class and have met 6 wonderful ladies and we stay after class and talk about everything good or bad in our lives. We also go out to lunch and a movie every 2 weeks. I feel so much better about my life since going to this class.
  •  We don’t get as many wrinkles since we don’t have all the facial movements and  if someone makes you mad, you can spill something on them and just blame it on your Parkinson’s..LOL!!
  • I am a retired RN. Trust me loss of sense of smell can be a blessing in a hospital setting. Not a blessing when baking brownies.
  • It has pushed me to not be so shy in talking in front of others as 4 years ago I started a PD support group in our Community as there was none And so I thought, Yes I can try this! So glad I did! Also My art has become a real blessing!
  • Learned be in the now and to get the most out of every experience.
  • I’ve learned to set boundaries with people in my life, not take on too much, take care of myself so that I can be the best mom and wife I can be. I’ve also learned to love myself more and honor where I am every day. And I don’t sweat the small stuff anymore!
  • I have learned to FINALLY and unequivocally stop putting up with other people’s BS, no matter who they are, even if it means banning them from my life. Ain’t nobody got time for that crap!!  😀
  • Learned not to take anything for confident and for the first time in my life love myself instead of not liking myself.
  •  I created a cartoon to deal with this journey or situation. I’m striving to be a positive deviant. Hope to share some of the cartoons.
  • Finally getting the proper diagnosis was such a relief for me and my husband. I started to think I was crazy. It also reminds me to make as many happy memories with my family, while I can.
  • It has shown me that I am a fighter. Stronger than I thought. I figured I can curl up in a ball and check out of life, or stand up and fight it. I’ve put my energy into now helping other veterans with illnesses that also developed post combat deployment. For me, it’s a healthy way to redirect my anger at the disease and the military and turn it into a positive. But don’t get me wrong, I still have crappy days…just a bit fewer😊  
  • Telling my story and the complete reinvention of myself!
    Image may contain: Allie Toepperwein, smiling
    Allie Toepperwein

    Speaking up for myself and not to sweat the little things. Allie T. – see photo

  • I’ve learned not to put off tomorrow, what I can do today! Traveling and making memories with my family and friends. Learning not to worry about tomorrow, just take care of today. Strength doesn’t just happen, you choose it!! You ladies are proof! ❤️
  • First, all the wonderful people I met at the World Parkinson Congress in Portland in 2016 as well as those in my local support group. Secondly, creating a new life in retirement as I will launch a PD website and blog this summer.
  •  Learned to text with my left hand! 😀
  •  Oops, forgot! Became an athlete (astonishing to this couch potato)😀   ⛹🏻‍♀️ 
  • Having everyone tell me I am an inspiration to them. Before I was diagnosed I was average and now I’m a warrior. It’s a strange feeling but it fuels my fire. I am stronger than I ever realized.   
  •  Where do I start? 6 years of living and doing so many things I would not have done. I’m the fittest I’ve ever been, healthiest, started a coaching business, become part of several charity fund raisers, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses. 🌹🌹🌹
  • I’ve learnt how to do radio shows from my home and that has lead to doing a community radio training course and now I have a co-announcer spot on the oldest grooviest avant- guard community fm station in Australia.…/radioshow-dj-madonna-from…/