Can You Live Well With PD?

With the World Parkinson’s Congress coming up in June, I have been considering submitting an abstract for the Poster Display at the Congress.  One of the categories for submission is “Living Well With Parkinson’s Disease”.  I started thinking about what works for me to live well with PD, and then decided to ask the 950+ members of a Women with PD Facebook group that I participate in, what works for them.  On line, we often discuss different symptoms, medications, responses to medications, etc.  But the women in this group also like to talk about the positive things in their lives.

In one long term study,  Complementary & Alternative Medicine Care in Parkinson’s Disease, (CAM Care in PD), Dr. Laurie Mischley, of Bastyr University, is looking at people who are living well with PD with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The twice annual survey asks about your diet, exercise, medications, alternative treatments, etc.   If you are not familiar with her work, click on the link above to find out more about it and to sign up for her study.

I decided to take a slightly different angle and ask the women what THEY think hedownload.jpglps them to live well with Parkinson’s.  So I posted the following to the FB group in November:

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

This is by no means a scientific study.  As a blogger, I like to poll my readers occasionally on a topic that interests me.  I look for trends in order to write about a topic.   For this poll,  I have about 60 responses so far,and it became clear very quickly that Exercise in any form is the most positive factor for living well.  Friendships with other women with PD is also very important to them.  Having friends with PD means that they have someone who knows how they are feeling and understands what they are going through.  Interestingly, Family-including a supportive spouse- and Faith were tied for third.

On the negative side, Sleep problems, including insomnia, fatigue and more, was the overwhelming winner.  Balance and Gait problems were second and Anxiety was third.

The one thing that was missing is “Staying Active”.  Only a few people mentioned anything related to this.  I realized that it was an important missing piece when I read Blogger Sherri Woodbridge’s Nov. 28 post in Parkinson’s News Today

She says:  Being active involves more than movement on your part. It includes a state of mind to persevere, to keep putting one foot in front of the other, and to not give up even when you feel like quitting.

I could not say it better than this, and yes, this is the one thing that keeps me going.  Since my husband retired 7 years  ago, we have traveled extensively around the world.  We go to the symphony, theater and sporting events, often with friends.  We are active in our community and spend time with our children and grandchildren.  And we both find time to exercise almost daily.  He plays golf, I still play tennis.  Sitting home and doing nothing is not an option for us.  As a result, I do not feel the isolation and depression that plague many people with PD.   I also feel good physically most of the time.   My biggest problem is the fatigue from poor sleep.  But I don’t let that stop me.  I have learned my limits and will rest when I need to, especially when traveling.   10 years after my diagnosis, my progression is still slow and I have not had to change my lifestyle very much.

We are fortunate that today that our doctors encourage exercise and being active, something that Parkinson’s people were discouraged from doing in the not too distant past.  For many of us, living an active life and exercise are the most important things that will make our lives better with PD.  Even if you have limited mobility, try to get out and and do things, even if it is just going to a movie.  You will find that the more you go out and do things you enjoy, the better you will feel.

If you would like to participate in my informal survey,  please send an email to me at twitchywoman18@gmail.com.  This is for all people with Parkinson’s only.  No caregivers, please.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue