An open letter to Ozzy Osbourne

January 22, 2020

Dear Ozzy,

Let me be one of the first to welcome you into our exclusive club that no one wants to join. Now that you have come “out” with your diagnosis, there is so much you can do for yourself and for other People with Parkinson’s Disease (PwP’s) .

You took a year off to come to terms with your diagnosis. Understood. Those four words : “You have Parkinson’s Disease” can be devastating. No one wants to hear that. We all go through the stages of grief until we come to terms with the knowledge that life as we knew it has changed. Only then can we move forward. As your wife Sharon (I like that name!) said, it is not a death sentence; there is much you can do to live your life to the fullest with PD.

MAKING THE BEST OF LIFE WITH PD

You are fortunate to be able to look for treatment anywhere. You say you are going to travel to go to a specialist clinic in Switzerland, where experts work on boosting patients’ immune systems before trying additional treatments. All of us would LOVE to hear how that goes.

You said to Sharon that, if that does not work, “I will go anywhere. I will go and see a witch doctor.” Now, I hope that is a joke or hyperbole to express frustration. Every one of us with this disease feels that way to some (and maybe a great) degree. But if you are serious . . .??? A witch doctor? If you want to get out to the edge, to try the experimental, there are much better avenues to take. In the 11 years since I was diagnosed, a lot of progress has been made towards finding a cure, or at least a treatment to slow or halt progression of the disease, and there are clinical trials going on world-wide. The community you have involuntarily joined would be thrilled to learn what you learn in one of those pursuits. But please, not a witch doctor.

THE BASICS

Research has shown that the most effective treatment for PD, better than any medication developed to date, is . . . . . exercise. Those of us who are living well with PD exercise almost daily. Since you live in LA, join us at our boxing class for PwP’s in Santa Monica. Don’t be shy – people with PD are some of the nicest and most inspirational people you will meet.

Keep on singing. Singing helps you maintain your speaking voice, which tends to get quieter with PD. It also helps with swallowing problems that may occur later as the disease progresses. And, God knows, many of us love to hear YOUR music. There are singing groups for PwP’s in LA you can join. I am sure that they would welcome another musician to their group. They even perform around Los Angeles. That may not be quite the same as going on tour with your band, but it could be a good warm-up for you to get back on the road. What a thrill that would be for those in the group!

There is so much more that you can do, but I don’t want to overwhelm you with that now. Good nutrition, finding the right medication for you, and – to repeat – exercise can all help you lead a normal life.

THE PARKIN GENE

Did you know that only a small percentage of people with PD have the Parkin gene? Because you have the gene, it puts you at an advantage over people like me who have idiopathic PD – Parkinson’s of unknown origin. There is a lot of research going on with genetic forms of PD that will not only benefit you, but may help the rest of us without the gene mutation.

USE YOUR FAME

Ozzy, you would be a great spokesperson for all of us with PD. Join Michael J Fox, Alan Alda and others in educating the public about PD and raising money to find a cure. Unfortunately too many celebrities announce they have PD and disappear from sight. Think of the good you can do for yourself and others by speaking publicly on our behalf.

If you can bite the head off a bat while performing on stage in front of thousands of adoring fans, you can battle Parkinson’s and win. I know you have the strength to do something positive with all of this. We have faith in you.

One of your fans and fellow travelers on this journey,

Sharon Krischer, aka Twitchy Woman

Beverly Hills, California

Watch the interview from Good Morning America here

What is happening with Parkinson’s research in 2020?

“Grow every stem cell,
search every gene,
sequence every exosome,
till you cure PD!”

Tom Isaacs, to the tune of Climb Every Mountain, for the World Parkinson’s Congress 2016

Dear Readers,

For the past 4 years I have tried to summarize for you any PD research that I have come across in layman’s terms, so that it is easier for all of us to understand. In my last post, I stated that I was optimistic about finding a cure and disease modifiying treatments in the next couple of years. I just received a blog post from The Science of Parkinson’s about the current clinical trials that blew me away. The road ahead: 2020 reviews much of the clinical research that is focused on disease modification in Parkinson’s. I knew there is a lot going on with research, but had no idea to what extent. So yes, I am still optimistic that the next couple of years will be some major breakthroughs for us.

There is no way I can summarize all of this for you. My head is spinning just from scanning through the entire article. I need to go back and study it more closely. Here is what the author, Simon Stott, the deputy director of Research at the Cure Parkinson’s Trust, says he will be focusing on:

As stated in the intro, I am going to focus primarily on clinical trials of potentially disease modifying experimental therapies in this post, as a broader discussion of ‘all Parkinson’s research in 2020’ is too greater task.

And in keeping with previous years outlooks, I am going to frame this discussion around the idea that:

Any ‘curative therapy’ for Parkinson’s is going to require three core components:

  1. A disease halting mechanism
  2. A neuroprotective agent
  3. Some form of restorative therapy

Now, the bad news is (as far as I am aware) there is no single treatment currently available (or being tested) that can do all three of these things. By this I mean that there is no disease halting mechanism therapy that can also replace lost brain cells. Nor is there a restorative therapy that stop the progression of the condition.

That statement can obviously be read as bad news, but it shouldn’t.

Let me explain:

A curative therapy for Parkinson’s is going to need to be personalised to each individual, with varying levels of each of the three component listed above. It will be a multi-modal approach designed for each individual’s needs.

For the rest of this post click here.

Warning, this will most likely make your eyes glaze over after a few minutes. Don’t plan to read everything at one sitting. It will take you hours to go through it all. Even if you do not understand it all, I think it will give you some hope for the near future. Enjoy.

2020 Vision in 2020

New Year’s Eve, Mr. Twitchy and I went to the LA Kings Hockey game with friends. At many professional sporting events, there are giveaways of mostly useless team memorabilia. Tuesday night, the giveaway was 2020 glasses, which are just plain impossible to put on. However, like everyone else in the arena, we had to take a selfie while wearing them.

Yes, we looked like total fools, the glasses came off immediatelly after the photo, and we had a great time at the game.

So did the glasses give us 2020 vision for the new year? We won’t know until the end of the year, but lets take a look at what we can look forward to.

There are many reasons to be optimistic about the future with Parkinson’s. There is a lot of research going on in many different directions. Here are just a few of the things that popped up in the Parkinson’s news-sites this week:

At the World Parkinson Congress in Portland, in 2016, the late Tom Isaacs, in his keynote address, said that the cure is always at least 5 years away. Based on all of the recent findings, I think that maybe his theory will be proven wrong in the next year or two. In light of that, my vision for the Parkinson’s Community in the coming year is that:

  • A breakthrough is iminent, both for effective treatments that not only make our lives better, but in fact delay the disease.
  • Biomarkers will become standard early predictors of Parkinson’s so that treatment can start earlier.
  • And most important, all of the research mentioned above brings us much closer to a cure – not in 5 years – but in the next 1-2 years.

My personal vision is that I will continue to live well with PD, so that I can keep doing the things that I enjoy, which include:

  • Taking care of myself with exercise, diet and engaging in an active social life.
  • Advocating on behalf of the Parkinson’s Community and helping the newly diagnosed find their way with PD.
  • Most important of all, spending time with Mr. Twitchy, our children and grandchildren, and being thankful for all that we have.

What is your vision for the coming year? For yourself? For Parkinson’s? Please join in the conversation.

Gratitude for a very full, successful year

Acknowledging the good that you already have in your life is the foundation for all abundance.

Eckhart Tolle

I have a dear friend who is always cheerful and upbeat. What is her secret? Her ritual every morning when she wakes up is to express gratitude for the things in her life. It’s that simple. Apparently she is not alone. When looking for quotes about gratitude, there were many like this one from Oprah Winfrey: “Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” 

As the year comes to a close it is often a time of reflection. We look at what we have accomplished in the last year. What we did not get done, in spite of our best efforts. But most of all, it is a time to express gratitude to those who have come into our lives, and gratitude for the things that we have in our lives. Yes, even if you are living with a progressive disease like Parkinson’s, there are some things that you can be grateful for. If you don’t think so, I challenge you to look around and you will find someone or something that you can be grateful for. And if you can, write it down so that you can look at it again next December. Hopefully, like Oprah, you will have more things to be thankful for.

Here are some of my reflections about the past year and what I am thankful for.

First, I want to express gratitude to my family and friends for always being there for me, supporting my in my endeavors, coming to Parkinson’s events with me and not letting me be a “sick person”. You insist that my life has not changed because of PD, so there is no reason to make accommodations. You encourage me to be independant. And I thank you for that.

This fall marked 11 years since the start of my Parkinson’s symptoms. My diagnosis was confirmed a year later by my wonderful Movement Disorders Specialist at UCLA. At the time, she told me that because I was tremor dominant, she thought I had a very slowly progressing type of PD. And she was right. My meds have calmed my tremor, and most people are surprised to learn that I have Parkinson’s. For this I am very grateful.

I have been fortunate to be able to take advantage of many learning opportunities for People with Parkinson’s. 5 years ago I attended my first Fox Foundation event in Pasadena, CA, which opened doors for me. I learned about boxing for PD that day and started a class a month later in Santa Monica, with what is now called Stop-PD. I have been going to boxing ever since. Unfortunately, in the past 5 years, there have been many times when I am the only woman in the class. Those women who attended quickly became friends. And the guys….well, they have been great. Thank you for all of your support. I love being with all of you. You are an important part of my week.

This year marked the 4th anniversary of a group that I started for women with PD in Los Angeles, which is now called Twitchy Women. We are not a traditional support group. We are more activity based, whether it is exercise, a talk by a psychologist, speech therapist, sex therapist or just exploring our creativity and just having fun. The friendships that have been made through this group are wonderful. And the most exciting news in the last few months is that several major Parkinson’s organizations like our concept so much that they have asked us to encourage other women to start similar type groups in other areas. If you want to start a group where you live, please contact me. I am not only grateful for what this group has given back to me and the other women, but am looking forward to expanding the concept and reaching a wider audience. Thank you to all of those special women who have come into my life because we share the common bond of Parkinson’s.

In June, I attended the World Parkinson’s Congress for the second time. This time the WPC was in Kyoto, Japan, so Mr. Twitchy and I, along with good friends that we travel with every year, took a cruise from S. Korea to Osaka, Japan and then spent 3 days touring Kyoto prior to the conference. Our trip was wonderful. Our friends went on to Tokyo and we attended the WPC. There I got to meet many other bloggers who I have only known on the internet, as well as quite a few followers of my blog. I submitted an abstract which was accepted and created a poster for the poster display. That was a lot more work than I expected. I probably won’t do it again, but I am glad that I was able to do it. But the most exciting part of the WPC for me was that Roni Todaro, VP at the Parkinson’s Foundation, was asked to give an early morning talk about the study she had asked me to co-chair, titled Women & PD TALK. Not only did Roni mention me, but highlighted me in her powerpoint presentation. Roni, I can’t thank you enough for the amazing shout-out!

Because of the new relationships with other bloggers that were nurtured at the WPC, I have had the opportunity to participate in several podcasts, conferences, webinars and more. It seems that the more involved you get in the PD community, the more it opens your world up. We are a small but mighty international group of people with Parkinson’s. We support each other, problem solve together, and reach out to others who are new to our community to ease their path on this journey with Parkinson’s. We are living proof that no one needs to go through this alone. And for that, I am extremely grateful.

It has been a busy year, with many gratifying experiences for me. This is not the future I could have imagined 10 years ago, when getting a diagnosis of Parkinson’s Disease meant losing the ability to live a normal life very quickly. With all of the latest developments in research, people are living better and living longer with PD. Maybe this will be the year that the cure is finally found. And for that, we will ALL be grateful.

This a wonderful day. I’ve never seen this one before.

Maya Angelou

Now available for viewing everywhere: “Shake With Me”

A documentary by Zack Grant

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Last March I went with Parkinson’s friends to a screening of the documentary short film “Shake with Me”, the story about artist and designer Debra Magid, who was diagnosed with Parkinson’s Disease in 2012. We all loved the movie and gave it an enthusiastic 5 stars for its portrayal of a woman – wife, mother and designer – and her family as they all learned to cope with the aftermath of her diagnosis and her re-emerging skills as an artist. I interviewed Debra afterwards about the film, life with Parkinson’s, family and more. You can read about it at Shaking with Debra Magid, which I posted last July.

The story that Debra’s son Zack tells in the film is not just a wonderful tribute to Debra but is also about her family and how they have met the challenges that Parkinson’s presents to all them. The documentary has been making the film festival circuits and has not had wide distribution. However, beginning today, it will be available to everyone on Vimeo.

From Zack:

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Debra and Zack

After a nearly four year journey, I’m very excited to release the film and give everyone the chance to find their own way to relate to my family’s story..

Shake With Me is a documentary short about Debra Magid, an artist and designer who was diagnosed with Parkinson’s disease (PD) in 2012. In the fall of 2016, Debra agreed to let her son, Zack Grant, document the relationship between her art and her condition. What started as an exploration of Debra’s growth as an artist in the face of PD grew into a larger story of creativity, health, family and the will to cope.

You can view the entire film on Vimeo here beginning December 4, 2019. I highly recommend it.

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Debra in her studio