Living Well with Parkinson’s Disease: the Patient’s Point of View

One of the great things about the World Parkinson’s Congress (WPC) is that People with Parkinson’s (Parkies) are encouraged to submit an abstract for the poster displays. If you are familiar with medical conferences, many do not include the patient’s point of view, just the scientists or researchers. So I decided to take advantage of the opportunity and submitted an abstract to the WPC on Living Well with Parkinson’s. The abstract was accepted and the next step was to actually do the research and produce a poster!

The following is a summary of my research methods and the results. There were not really any big surprises, but the important thing is that it opened up a conversation for People with Parkinson’s to give their point of view about what works for them day to day in their journey with PD, not what their doctors or their care partners say.

Objective:  As a blogger who writes about living well with Parkinson’s, I was curious about what other Parkies think contributes to their continuing to live well with Parkinson’s. 

Method:  I asked two groups to participate in the survey. The first was a Facebook group for Women with Parkinson’s Disease in November, 2018.  The second group were readers of my blog, Twitchy Woman, which is a mixed group. I posed the following question to both groups:

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

Results:  There were 140 responses, 70 from each group.

ON THE POSITIVE SIDE:

EXERCISE IS THE SINGLE MOST IMPORTANT CONTRIBUTER TO LIVING WELL WITH PARKINSON’S – DWARFING ALL OTHERS. Medications, Emotional Support from family, friends, and especially friends with Parkinson’s, followed by a Positive Attitude were also important.

ON THE OBSTACLE SIDE:

DAYTIME FATIGUE AND INSOMNIA WERE THE BIGGEST OBSTACLES Many Parkies cited sleep challenges as their biggest problem, with 63% responding that lack of sleep and fatigue were a major obstacle for them.  Only 4 Parkies reported positively that they get enough sleep.

The effects of lack of sleep often cause other symptoms to flare up or become more severe. Balance and Gait problems, including falls, were the second most named obstacles, with Anxiety close behind.   Many other symptoms were mentioned such as constipation, dyskinesia, off times, as well as lack of PD resources in their area.

Conclusions: 

According to People with Parkinson’s: Getting enough sleep and exercise are the most important factors for living well with Parkinson’s Disease.  Lack of either will have a cascading effect on the severity of their symptoms day to day.

At the WPC, I was given a 2 hour time slot during lunch on Wednesday to stand in front of my poster and talk to people about it. I enjoyed seeing what other Parkie’s presented on their posters. And it was also a great way for me to meet other people, many of whom are followers of this blog. For those of you who came to my poster just to meet me, thank you. It was great to talk to you and I really appreciate your support.

The next World Parkinson’s Congress is in Barcelona in 2022. I don’t know if I will be submitting a poster again, but at least I can say that I did it!

I can check that off on the list of things I never thought I would do. That list keeps on growing, thanks to PD.

Warning: The results of this survey are from a compilation of comments from People living with Parkinson’s disease. The responders were self-selected, so they may not be representative of many others with PD. Please do not make changes in your medications or other therapies without speaking to your doctor first.