Parkinson’s Awareness is a Year Round Project

 With gratitude, optimism is sustainable

Michael J Fox 

April may be over but our fight against Parkinson’s disease has not ended. We spent April doing sit ups, sit to stands, walking, running, biking, doing all we could to bring awareness to the world about Parkinson’s disease.  We have educated our friends, our elected officials and just about anyone who would listen to us.  But we can’t stop because April is over.  Parkinson’s is not a one month disease.  It is with us every day, 24/7, 52 weeks out of the year.

The reality is that we don’t disappear just because April is over. We don’t feel any different than we did 30 days ago, maybe worse because we have been doing all of these things that are not usually part of our regular exercise routine.  So like any weekend warrior without PD, we get out there and overdo some new form of exercise and wake up the next morning unable to move.  In our efforts to do something good for our community we forget that we might have to make some concessions to the dreaded PD. Maybe we need to shift our priorities and make educating the public about PD more important than getting out and doing some sort of exercise once a year that is not part of our regular exercise regemin.

How much do your friends and family actually know how you are feeling? Do they understand that sometimes you just don’t have the energy to do the things you used to do? Do you even talk to them about Parkinson’s and what it is doing to your body? Explain to them how you feel, what to expect as time goes by. Tell them about the good things you have in your life because of Parkinson’s. Let them know what you are grateful for and how they can help you as the disease progresses.

Self Care

You still need to take care of yourself the other 11 months of the year. There is so much to learn after you get the diagnosis of PD.  You can spend hours on the internet reading articles, blogs, PD websites.  But the bottom line is that you are the one who has to live with Parkinson’s, and you have two choices.  You can give up, which is never a wise decision.  Or you can learn to accept it and find what works best for you.  As I told a woman the other day who was recently diagnosed, self-care with PD takes a lot of time and energy.  You have to be willing to make the necessary changes in your daily routine that will make your life better with PD.  And you do this every single day of the year, not just in April.

Just ask Michael J Fox.  In this terrific interview on CBS Sunday Morning with Jane Pauley, he talks about the 30 years he has lived with the disease.  In his upcoming documentary, Still, available on Apple+ on May 12, Fox talks about the toll that the disease has taken on him and his family, yet he still remains optimistic.  When I was diagnosed in 2009, he was the only celebrity that I knew of who had the grit and perseverance to take on PD, and his foundation has raised over $1.5 Billion to find a cure.  With the discovery of a biomarker, announced last month, we are finally getting a little bit closer.  Thank you Michael J Fox for everything you do for those of us with PD.  You have been a blessing to all of us.

Gratitude Stories

Ilene C: My diagnosis made me realize that I could not trust my husband to provide me with care that would be in MY best interest!  After many years of struggling to keep the marriage going, I accepted the fact the I would be better off on my own.  I can now plan for my needs and develop a new support system while I am not physically or mentally impaired.  The diagnosis was the push I needed!

Do you have a gratitude story? Send it to to be included in a future blog.

Clinical Trials

If you are 60 or older, consider participating in the TOPAZ Study.

Click here for more information. The invitation code is Twitchy

Have a great week!


Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.