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.

Practice Makes Perfect

 

It doesn’t get easier, you just get better

seen on a t-shirt at Box n Burn gym

You want to try something new, but it just seems too difficult.  You go to your first yoga class and you are lost.  Everyone else seems to know what they are doing, but you are clueless.  You keep going, hoping that you will figure it out.   And then, one day, you are moving through the poses like everyone else.  Your body seems to know what to do.  You wake up one morning to discover that you can get out of bed much easier.  In addition, your gait has improved, your balance is better, and some of your other symptoms have improved.  How did that happen?

Malcolm Gladwell, in his book Outliers: The Story of Success quotes neurologist Daniel Levitin, who said “that 10,000 hours of practice is required to master a level of mastery with being a world-class expert – in anything”.  He goes on to say: “It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery.”  On average, it takes 10 years to reach 10,000 hours.  Some examples he gives are The Beatles, concert musicians and hockey players.  Their commitment to practice many more hours than others gives them the skills they need to be the best of their profession.

So how does that apply to Parkinson’s Disease?  We certainly don’t have the luxury of doing something for 10,000 hours.  But if we keep working at a task,  we should improve.  Right?  That is the theory behind LSVT, Rock Steady Boxing, Dancing for PD, Yoga and all of the other PD exercise programs out there.  We are told to learn new things.  It is good for the brain.  It can be difficult to learn a new skill, especially if you have a tremor and stiffness.  You start out slowly.  But it should start getting easier as your muscles and your brain adapt.  And gradually you will work harder and better, without even trying.   If you stick with it, you should start noticing positive changes. You have practiced your voice exercises diligently and at some point, you discover that no one is complaining that they can’t hear you.  You have worked hard enough and long enough to be able to project your voice without even trying.  It now comes naturally to you.

Unfortunately, many Parkie’s are in a slow downward spiral as their symptoms continue to worsen.  They try everything they can to slow down the progression, but don’t put in enough time to “master” a skill.  I wonder what would happen to Parkie’s if they danced or boxed often enough to reach 1000 hours a year.  Would they begin to master the moves?  And how would that translate into improvement of their PD?

These are questions for the researchers out there.  I don’t know the answers.  But I do know that when I am engaged in an activity that I have been practicing often, my PD symptoms seem to improve.  I may not have mastered the activity, but it is getting easier over time.   And that definitely makes my life better.

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If you are not sure what type of exercise to do, here is a list of 12 types of exercise suitable for Parkinson’s Disease patients

A note to my readers, we are leaving for a vacation in Ireland, so there will be no post next week.

Women & Parkinson’s Initiative (Part 2)

I am truly honored to be part of this distinguished group of women.  I read everyone’s bios, but they do not do them justice.  Each is remarkable in her own way.  And Parkinson’s brought us together.  I have heard many times how their lives have been enriched, yes enriched, by having PD.  No, we don’t want to be defined by our PD.  But what has happened is that because we have PD, each of our lives has gone in a new direction.  We have taken skills from our “former lives” and are using them to reach out to other women who also have PD.

The goal of the conference is to teach us about how women are affected differently with PD than men.  We will then go back to our communities on behalf of the Parkinson’s Disease Foundation and plan a retreat, event, support group or other educational program specifically for women with PD.  Today we took our first steps in the planning process and will work out the remaining details once we return home.

Yesterday we heard from three women who gave us some of the tools we will need to plan our program. Many of these observations are from fellow blogger Darcy Blake from Parkinson’s Women Support

Rutgers Professor Roseanne D. Dobkin shared with us her recommendation to stave off depression: meaningful involvement with daily exercise, social interaction & personal goals in life.  She says we can’t control what goes on around us but we CAN control how we respond to it.  With our diagnosis things immediately become different. If we don’t take care of ourselves, everything else falls by the wayside.  That includes our spouses, children and work.

The second speaker was one of our own women, PD self-efficacy guru Diane G. Cook who said, “Achieve influence over conditions that affect one’s life. Believe in possibility!” Very true!

Dr. Rebecca Gilbert, from the Division of Movement Disorders, NYU Langone is an incredible speaker.   Those who are her patients are fortunate, indeed. “Become a force for good, don’t wallow,” she said. Dr. Gilbert, who covered every aspect of medications, symptoms and future developments, also answered a flurry of detailed questions from our very educated audience without hesitation. She is like a key to the library of Parkinson’s disease, and we are so thankful for her!

IMG_0386Our last session before dinner was an energizing hour with Dr. Becky Farley who put us through PWR! Parkinson’s Wellness Recovery moves and a boxing demo, featuring Jennifer Parkinson (yes that is her name) and me.  We ended with pranayana breathing (a form of yoga breathing) and a meditation.  We left her session refreshed after a long day of sitting.

At dinner we celebrated coming together with some great laughter thanks to the humor of Robin Morgan and some soul lifting by Maria De Leon, who talked about her journey as a Neurologist specializing in PD, who was diagnosed with early onset PD herself. Her book, Parkinsons Diva, and “The Peripatetic Pursuit of Parkinson’s” by the Parkinson’s Creative Collective graciously given to us by Katherine Huseman, another of the Fab 25, were our gifts to take home.  And for the finale, Ann Boylan, and three other brave women, performed a hula that she choreographed  specially for the evening.

As I return home, I look forward to working with Jennifer Parkinson to create a unique event for women with PD in Southern California.   More on that soon.