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

 

Sharing some interesting news

There have been a number of interesting stories on the internet this week and I would like to share a few of them with you.

Parkinson’s Passport

First, the European Parkinson’s Disease Association has developed the Parkinson’s Passport.  The Parkinson’s Passport enables you to complete an getresourceinformation booklet about your medications and treatment and then carry it when you are out and about or traveling abroad.

Apple Care Kit

Apple has unveiled its CareKit health tracking platform and the first app, which will be available in April, is for Parkinson’s Disease.   carekithitn

“When we introduced ResearchKit, our goal was simply to improve medical research and we thought our work was largely done,” Apple COO Jeff William said during an event on Monday. “But what became clear to us is that the same tools to advance medical research can also be used to help people improve care.”

Williams added that the first CareKit app is for Parkinson’s, a natural condition to target because 24 hours after Apple made ResearchKit available it led to the biggest Parkinson’s study to date.

Particular to the disease, researchers can see symptom levels across a range of days before and after medication starts, meaning physicians can track whether the treatment is actually working for a certain patient or not – if they have access to that data. The first CareKit app, Williams said, surfaces that information for patients and doctors.

At the launch, six institutions agreed to immediately begin using the app: Emory, Johns Hopkins University, Parkinson’s Disease Care New York, Stanford, the University of California at San Francisco and the University of Rochester.

Williams said the app will enable them to have more formalized conversations with patients about treatment.

Rosacea

Do you have Rosacea?  A study in Denmark linked a higher risk for Parkinson’s in people with Rosacea.  As reported in  Parkinson’s News Today The incidence rates of PD were 3.54 per 10,000 person-years in the general population, and 7.62 per 10,000 person-years in people with rosacea. PD was also found to occur about 2.4 years earlier in those with rosacea.

New Stem Cell Treatment Approach for Parkinson’s

Also from  Parkinson’s News Today Rutgers and Stanford University researchers have developed 3-D “scaffolds,” or fibers, that can support healthy and high-functioning human neurons derived from adult stem cells, which can be transplanted to the brain to replace diseased neurons. The technology represents a possible new therapeutic strategy for numerous neurological conditions, including Parkinson’s and Alzheimer’s disease, amyotrophic lateral sclerosis, and multiple sclerosis.

April is Parkinson’s Awareness Month

Look here later this week for information on how you can get involved.

PD Women and Other News

Just a short post this week sharing three articles that I read this week.

The first is statistics about Women with Parkinson’s from the conference I just attended.

From Parkinson’s News Today:  Parkinson’s Disease Foundation Launches Women and PD Initiative to Urge Local Communities Involvement

According to a patient survey conducted by the PDF some of the under-recognized clinical needs of women with PD are:

  • 72 percent of women living with PD say that there are issues specific to women with Parkinson’s that they feel are not anywhere addressed;
  • 88 percent think there is a need for resources and information focusing on the specific needs of women;
  • 91 percent never received these types of information and/or resources;
  • 91 percent said that there are no specific meetings, conferences and/or support groups for women with PD in their communities; and
  • 89 percent stated that they would participate in women and PD meetings if any were available in their area.

Feel free to share this information with others.

The second, from the Boston Globe, is about the new research coming out about alpha-synuclein and the promise it holds for those of us with Parkinson’s Disease.  The beginning of the End talks about the race to find a cure:

The potential breakthrough comes from a recent focus on alpha synuclein, a protein found mainly in nerve cells. It is so biologically obscure that scientists aren’t even sure of its purpose. What they do know is that the protein can deform, or what scientists call misfold, and gum up into clumps called Lewy bodies, which litter the transportation system that nerves rely on. The nerves die. If enough die, your body stops producing the dopamine necessary for normal functioning. You have Parkinson’s disease…. the discovery has given scientists a target for therapy. Their new weapon? Vaccines, or more generally, immunotherapy — an approach that has kickstarted the kind of outbreak you can cheer for: loads of biotech investment and clinical studies.

The third article, The New Prescription for Parkinson’s:  Puttering, comes from The Michael J Fox Foundation.  A recent paper from The University of Michigan  shows that more everyday physical activity, perhaps more so than vigorous exercise, is associated with less severe motor symptoms. So my best advice is to just keep on moving!

Have a wonderful Saturday.