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

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.