Keeping Busy with Parkinson’s

Are you happier when you are busy? I guess that is a no-brainer for most people. When we are busy, we often forget about what is ailing us. With Parkinson’s, those dopamine rushes that come as a result of doing something successfully certainly make us feel better. That is one of the reasons why video games can be so addictive. They just make us feel better, especially when we win.

Mr. Twitchy, my wonderful neurologist and psychologist keep telling me that I need to cut some things out of my life, but honestly, the busier I am, the better I feel. Yes, I admit that I am more scattered than I used to be. My desk is a perpetual mess. I finish one project and then look for another to fill the void. I like to think that is because executive function in the brain is affected by Parkinson’s. So its not my fault! Really, its not!

So what is Executive Function? According to the ADPA:

Executive function:  One can think of the “CEO” (chief executive officer) of a company and the many tasks involved in directing the organization. These activities may include multitasking, solving problems, starting new tasks, and switching tasks. Executive function involves the prefrontal cortex of the brain and the dopamine system, which are affected in PD. Executive dysfunction is one of the most common cognitive changes reported in PD.

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Does this sound like you? After living with Parkinson’s for 10 years, I have found that things I took for granted, all mentioned in the above description, are getting more difficult. Multi-tasking is getting harder. I get distracted and forget to complete a task. I am always thinking of new projects, which only gets me deeper in the hole I am digging for myself.

However, there are rewards that come with all of this, and let’s not forget that. Don’t stay home alone, thinking that you can’t do anything. Get out there, continue to live the best life you can, with modifications when necessary, and you will feel better. Start slowly if you need to, its ok. Go to Parkinson’s movement or voice classes where you will find a wonderful welcoming community. Somewhere along this journey, you may find that you are in the best shape you have ever been because of all of the exercise you are doing. You have community of people with PD who understand what how you feel without even having to ask. You may even have found a new skill that you love – painting, music, writing. And the more you do it, the more you want to keep on doing it because it makes you feel good about yourself.

And then you will end up like me, and countless other people with PD who have found that they are busier than ever before and loving every minute of it. What’s so bad about that?

Speaking of keeping busy, two weeks ago I recorded a podcast with two other women with Parkinson’s for Parkinson’s Life, an online magazine based in the UK, for its Women and Parkinson’s Campaign. Mariette Robijn and Omotola Thomas joined me to talk about being a woman with Parkinson’s. We had a great time talking to each other about our experiences with hormones and PD, children, spouses, doctors who don’t listen to us and more. Click here to listen to Episode 5.

Striking a Balance

‘So, what fun things have you been up to lately’ is the finest question a health care professional can ask. It also happens to be the finest question I can ask myself.     Mariette Robijn

 

Two blog posts with opposing views on living with Parkinson’s  were published this last weekend, with much commentary from you, the readers, on various FB pages.  The PD Gardener wrote about the downside in  Why I think Parkinson’s is a Soul Sucking Disease.  On the other hand, Mariette Robijn asked  So, what fun things have you been up to lately?

I will let you figure out which one was better received in the Parkie community.  I would like to offer my own take on how we should be looking at both the positive and the negative views on life with Parkinson’s.  There needs to be a balance between both in order to live well with PD.  Concentrate only on the negatives, and you will never find any joy in life.  If you concentrate only on the positives, you may not be taking care of yourself properly.

On the negative side, yes, there are a lot of things that we don’t like.  We can all identify with many of the things that Stan, the PD Gardener, has listed.  For each of us, it is something different that has been taken away by this “soul sucking” disease.  There is a loss of self, of who you once were.  For some, it is a gradual decline, others see major changes overnight.  It may be the tremor that comes and goes, interfering with your ability to eat, write legibly or engage in some of your favorite activities.  For others, the pain can be excruciating one minute, and gone the next.  No reason for the sudden onset or disappearance.  You can’t walk, but you can dance to music.  Having Parkinson’s can be like having a split personality.  You never know how you are going to feel, from day to day, hour to hour.  And for your caregivers or carepartners, well, they are just as confused as you are by this rollercoaster that you are on together.  As a result, we forget how to have fun in our lives.

On the positive side,  you may find your opportunities for fun to be diminished, but they are still there.  You may just have to look a little harder.  But trust me, find some things that make you happy, and you will feel better.   So you can’t go ballroom dancing anymore.  Put on some music and start moving, even if you are in a wheelchair.  Laugh at yourself because of the ridiculous movements you are making.  You can almost feel your dopamine levels increase as a result.

Play games with your friends.  One friend of mine says that her mother, who has dementia, only wants to play Rummy Cube with her.  They are having more fun than they have had in years, just playing a game.  Best of all, she can see the fog of dementia lifting, albeit temporarily,  while they are playing the games.

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Play video games.  Yes, video games. When was the last time you played Super Mario Brothers?  Researchers at Purdue University are now looking at the benefits of use the Wii games to improve Parkinson’s patients’ movement, speech, and quality of life.  So dig out the old Nintendo Wii system gathering dust somewhere in your house and have a good time.

Watch a funny movie or tv show.  Something ridiculous, that will make you laugh uncontrollably is guaranteed to make you feel better.

imagesSmile.  Yes, smile, even a fake smile.  According to a newsreport on NBC just a few days ago,  Smiling can trick your brain into happiness – and boost your health. Why?  Science has shown that the mere act of smiling can lift your mood, lower stress, boost your immune system and possibly even prolong your life.  Another side benefit for us Parkies – a dopamine rush!

You don’t have to go to Disneyland to have fun.  You don’t even have to leave home.  The opportunities are there for the taking.  So when your doctor asks you if you have had some fun since your last visit,  you can say without hesitation, “YES” with a big smile on your face.