A possible breakthrough in PD treatment, Boxing and more

A few posts from the Parkinson’s Action Network.

Did you know that there is a Congressional Caucus on Parkinson’s?  The Congressional Caucus on Parkinson’s Disease was created to educate Members of Congress about Parkinson’s disease issues and to inform them and their staff about the latest developments in Parkinson’s research and care.  Led by its Co-Chairs, more than 150 members of the Congressional Caucus on Parkinson’s Disease work together to support the needs of our community in the hopes of finding better treatments and a cure for Parkinson’s.  They are our champions, and we are grateful for their commitment and dedication.    To find out if your Congressperson is on the list, go to http://parkinsonsaction.org/our-work/congressional-caucus/caucus-list-2/

Contact your Members of Congress today and ask them to show support for the Parkinson’s community by joining the Congressional Caucus on Parkinson’s Disease – or just take a minute to say thank you! Take action!

Exciting News!!!!!

Researchers in Singapore, working with Harvard University, have found that anti-Malaria drugs may have the ability to improve the lives of those of us with PD.  Read on:  http://www.cnbc.com/2015/07/15/potential-parkinsons-cure-unveiled.html

And finally, a video from Rock Steady Boxing in San Francisco.  For those of you who have not tried Boxing yet, what are you waiting for?  And to the women in Los Angeles, why aren’t you joining me at boxing at BoxNBurn in Santa Monica?  It is fun and an incredible workout.  (http://abcnews.go.com/WNT/video/parkinsons-disease-sufferers-fight-reclaim-lives-boxing-therapy-32405175)

Music and the brain

Rock and roll music, if you like it, if you feel it, you can’t help but move to it. That’s what happens to me. I can’t help it.

Do you remember the scene in The Full Monty when the group was in line at the Welfare Agency and they started moving unconsciously to the music that was playing?  How many times have we all done that?  I often find that when I am in the gym, I start moving to the beat of the music that is playing.  The instructors know the power that the music has over us to keep us going.  It pushes us to move, even when we think we can’t do another thing.

Playing music has an even more powerful effect on the brain.  For those of us with Parkinson’s, music may be an essential exercise for our brains.  I have been taking piano lessons for the past 3 years to keep my fingers moving.  That has definitely helped.  My dexterity has improved, it calms my tremor and makes me feel good.  But one of the problems that I discovered is that it is easy to play each hand separately, but when combining them, I have a much more difficult time.   And I can’t memorize music at all anymore.  In a chat room on Patients Like Me, I found that I was not alone.  My unscientific take on this is that we are using both sides of our brain when playing with both hands and the lack of dopamine makes it difficult for the two sides to work together.  And outside distractions make it even more difficult.

So why do this happen?  Take a look at this Ted-Ed video

Even if you have never picked up an instrument before, now may be the right time to start making music.  Your brain will thank you for it.

So many blogs…….

This week I began a 3 week online class called Blogging 101 sponsored by WordPress.  I had already written the title to this blog before I saw last night’s assignment: “Find 5 new blogs to follow.”

I had been thinking about the proliferation of blogs and how many there are for People with Parkinson’s.  Somehow I keep thinking of new things to write about and discover that others have the same idea, often a day or week later.  Those of us with Parkinson’s have so many of the same concerns and issues that there are many common themes in our blogs.  It seems that everyone is writing.  So how do you determine which ones to follow?  Some of them are very informative and full of technical stuff.  Others are just fluffy vanity pieces, like so many other blogs on other topics.   And there were a few with terrible titles and tag lines that actually had good content.  The assignment the second day was to create a GOOD title and tag line that conveys your message.  Obviously some of these bloggers didn’t take the class.  Somewhere out there in cyberspace are blogs that speak to you and me.

So here are a few of the new blogs I decided to follow for now:

Parkinson’s Women Support

Parkinson’s Disease And Me

Defeatparkinsons

YogaPath

You may want to look at a few of these and decide whether to follow them.  We all of have different experiences with PD, so it can help to see what others are doing to cope and to improve their lives.  However, I would love for some of you to contribute to this blog, sharing your thoughts, issues, successes or anything else related to your experience with PD so that we can all learn from one another.

The View From the Other Side

I have found that it is rare to find in any blog, how family members see their loved one who has PD.  After a very interesting conversation yesterday with the wife of a man with Progressive Supranuclear Palsy (PSP), a very rare form of PD, and hearing how it has affected her life, I thought it would be interesting to hear from our families.

For Mother’s Day, I have asked my daughters and my husband to each write a little something about how they see PD affecting me, and their lives.

I would love to hear from your family members as well.  Please ask them to write how they see your life has changed, or theirs, since your diagnosis of PD.  I will be happy to share all of your stories

This is from my husband, Joel:

Sharon asked me to comment on how her life/our lives have been made different by PD.  While it is hard, even dangerous, to answer hypothetical questions, the answer seems pretty clear:  PD might (might) have impacted our daily routines and activities, but it has not worsened the overall meaning or quality of our lives.  It might even have made it better.

The cards that life deals us are revealed to us over time.  We get some aces, some deuces and some of everything in between (and Sharon drew a joker as her husband), but regardless of the mix, we have to play them as best we can (we don’t get to draw new ones, or trade away the ones we don’t like) and what sets some of us apart is how we play those cards, both the good and the bad.

Watching Sharon play her recent unfortunate string of health cards has been humbling and inspirational; hell, it’s even been fun.  There is nothing that PD is preventing her – or us – from doing with or in our individual or collective lives.  She has met it head on with ferocity (she is more physically, socially and mentally active than ever).  With intelligence (she seems to know as much, if not more, about it than her doctors). With humor (using the nom de plume “Twitchy Woman” (though we disagree about which one of us coined that appellation)).  And, above all, with grace (she shares what she is going through for the very purpose of inspiring others).   She has her down moods but they are rare and they are short.  Our friends marvel at all she does.  So do I.  And I struggle to keep up.

The fun part?  She is taking boxing.  I’ve watched her workouts a couple of times and came away  laughing AND in jaw-dropping wonder both times.  She is amazing.

Oh, and she’s still unconscionably gorgeous.

And from my daughter, Jennifer:

My mom asked me to talk about her life since her Parkinsons diagnosis, how she has changed. But I don’t see it as change. I suppose I could talk about how she has become a creature of habit with her yoga addiction in order to help keep the tremors at bay, but really when she asked me to write this, all I could think was “my mom became superwoman.” 

About 6 years ago, my mother was diagnosed with Parkinsons Disease. At the time, this was just one thing in a string of awful things my mother had to endure regarding her health (fibroid tumors, adhesions, breast cancer, a broken ankle). I remember just taking it in as she told us. Knowing it was awful, and not knowing how to feel about it, but also not reacting. I think I thought that reacting would just make it harder for all of us to hear, so I didn’t.

She let us know it wasn’t degenerative, which I suppose is the best a person can hope for with such a scary diagnosis. Things were only made worse when my grandmother’s health went into decline and my mom was not only dealing with her own problems, emotional and physical, but my grandmother’s as well. So everything awful happened to my mother in a short period of time, and talking to her, you’d never know it. The brave face she put on was not just believable, it was sincere. She took control of the disease and not the other way around. She didn’t stop doing the things she regularly did – instead she kept doing them, traveled to see my grandmother on the regular, traveled the world, and on top of it became more knowledgeable about the disease itself. She showed us how strong a person she is by never letting this or any diagnosis stop her from living her life. So how did my mother change since her diagnosis? She became stronger because she had to, and she became an example of how to gracefully take what life gives you even if it’s not according to the plans you have for yourself.

Both of these made me cry.  I am so fortunate to have them here to help me on this journey.

Sharon (Twitchy Woman)

The Energizer Bunny and Me:  a tribute to my Mom for Mothers’s Day

energizer-bunny

We all learn from our parents and my mother was a great influence on me.  In spite of several surgeries for mysterious lumps after a mastectomy, she just kept on going and going and going……….she would call me and say that she was going in the next day for surgery to take off yet another piece of her, but don’t worry, it’s not a big deal.  We started to call her the Energizer Bunny.  Her attitude was to keep on going until you can’t.   Unfortunately one last surgery resulted in a massive stroke which meant the energizer bunny had finally run out of batteries.

I feel the same way about living with PD.  We need to keep our batteries fresh so that we can keep going and going……The alternative is not so great.  For me, the number one thing is to exercise every day.  Of course there are days when it just isn’t possible and I try to get in the recommended 10,000 steps a day to make up for it (thank you FitBit).   Through a combination of yoga, boxing for PD, cardio on an Elliptical or Bicycle, and once a week tennis, along with my meds, I am relatively pain and tremor-free and find that my lifestyle is not compromised by having PD.   For those of you who are not exercising, please get out there and find something that you enjoy.  There are great Dancing for Parkinson’s classes, Boxing for PD, yoga classes and much more.  Or just go walking with a friend.  Get a good exercise tracker such as a FitBit, Jawbone or other device, to track your exercise.  Set up a competition with a friend to encourage you to get out there.  Most people find that their tremors decrease along with their stress levels when they exercise.  And you will feel a lot better in general.

Those of you who know me understand that it is hard for me to slow down.  I continue to find more things to keep me busy,  usually because of some great idea that occurs to me at 4:00 am when I should be sleeping.  Hopefully, it will be a very long time before my batteries run out.   I have always been like my mom, and to her, I say “thank you.”