WEGO Health Awards

Back in June, several of my blogger friends had submitted applications to become a nominee for the WEGO Health Awards for Best in Show Blog. I had joined WEGO a few months earlier, but really did not know much about their Annual Awards. I submitted an application. Then we had 6 weeks to get votes and endorsements. So a group of us worked on endorsing each other and getting our friends to vote for us. The voting period ended in July and then the judging of all of the nominees began.

WEGO received over 6000 nominees in 15 categories, which ranged from Rookie of the Year, to Patient Leader Hero. The 5 finalists in each category included the top 3 vote getters and 2 others chosen by the judges. I had applied for just the blogger category, but some one nominated me for 2 others as well. I don’t know if that helped, and I know I was not a top vote getter, but last week, on the designated date, I received an email from WEGO that I was one of 5 finalists in the Best in Show Blog category. What an honor! As far as I can tell, I am the only Parkinson’s person in any of the 15 categories.

A short video of the Best in Show Blog Nominees
The winner was Kelly Cervantes who writes about her daughter with Epilepsy Inchstones by Kelly Cervantes

So what is WEGO Health? It is an internet company that believes in the value of Patient Leaders as an integral part of our health care system. Patients with many different illness are trained and given the opportunity to connect to health care companies, providers and others as patient experts.

From the mission statement:

“WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders. We are the world’s largest network of Patient Leaders, working across virtually all health conditions and topics.”

WEGO collaborates with startups, life sciences companies, non-profits, agencies, government and all types of organizations across health care. They offer enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services.”

In other words, WEGO seeks to empower Patient Leaders and Influencers (sounds so much nicer than “Bloggers”) to work with the health care industry in a meaningful way. There has been a noticeable trend in the last few years to include Patient Leaders in the decision making process for drug trials, treatment protocols and more. Our experiences and our opinions do matter. If the trend continues, I think that we will start seeing a bigger change in how chronically ill patients, such as People with Parkinson’s, are cared for in the not too distant future.

In the end, I did not win for Best Blogger, but I can try again next year. Apparently it usually takes 2 or 3 tries to be named the winner in a category, according to several people I heard from. In the meantime, I get another cool badge to put on my website! That is if I can figure out how to do it. Woo hoo!

Do You Peloton?

pel·o·ton/ˈpeləˌtän/ noun

  1. the main field or group of cyclists in a race
  2. an exercise bike streaming indoor cycling classes to your home live and on-demand.

Mr. Twitchy and I acquired a Peloton bike a couple of years ago. A Peloton Bike is essentially a spin bike with a subscription service of unlimited live and recorded classes, accessible through a large touchscreen. The classes vary in length and difficulty. I try to get on the bike at least once a week, but it is not enough for me to really feel the benefits of it. It seems that the rides are getting harder and harder for me. Maybe it is just that I am getting older and all of the riders are younger than me? Or can I blame it on PD? I needed to find out how other Parkies do with the Peloton bike.

I thought that there must be some other Parkies out there who ride Peloton bikes. About a year ago, I started a Facebook group for Parkies who have Peloton Bikes so that I could find others and compare our experiences. So far we have 32 members in the group and we would really like to increase our numbers.

I loved when Hannah said to us ‘Parkies with Pelotons, YOU lead this ride’.

Amy

One of the women in the group, Amy Montemarano, proposed that we find a live class with Peloton that would be good for our group to join. Amy contacted Peloton and gave them the information about our group. The instructors always call out people and groups that are either in the studio with them or have signed up to join the class live, on-line, so this was a good way to get some publicity for Parkinsons at the same time. On Monday morning, 4 of us joined the 9:55 am class. We were all able to follow each other on the Leaderboard. One rider, Alice said: “That was fun doing a ride together! Lori , I broke a personal record trying to catch up with you.” Lori also broke a personal record because she was so excited to be riding with a group.

Loved riding with other strong Parkies

Lori

We hope to do this again, maybe on a regular basis. If you want to join our little group, go to our Facebook page Parkies with Pelotons. We are a closed group, so you must answer two simple questions: Do you have Parkinson’s and Do you have a Peloton bike? If you answer yes to both, we would love to have you join us.

Other exciting news from Twitchy Woman!

If you missed the PMDAlliance Inspire Me session last week featuring Twitchy Woman, you can watch it here.

And even more exciting, Twitchy Woman is one of 5 finalists for the WEGO Health Awards Best in Show Blog! Winners to be announced next week. Click on the photo for more information.

Parky Life Hacks and Inspire Me

Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness

Matt Eagles

Happy Labor Day to those of you in the United States. I hope you are enjoying the last un-official day of summer.

Twitchy Woman is in the media. Two totally different things made my week more interesting!

What is a Parkylife hack? A tip or trick to help with everyday life.

First, a few days ago I was surprised by a tweet from ParkyLife. The amazing Matt Eagles, who was diagnosed as a young teenager and very active in the UK Parkinson’s community, has come out with a deck of cards he calls Parky Life Hacks. Each card has a quote from someone with PD on one side and an illustration on the other. I had seen a few of them in Kyoto, but this one was new and had a quote from, you guessed it, Twitchy Woman.

A press release from Havas Lynx Group in the UK, who worked with Matt to design the cards, says: Parkylife.com brings together a combination of stories, hacks, perks and profiles of inspiring folk who have achieved great things despite their diagnosis. It has been designed by ‘Parky’ people to provide a positive and optimistic outlook on adapting to life with the disease.

For Matt “Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness. It’s unique, it’s never been done before and its changing the way people with parkinson’s view their lives.”

Go to Parkylife.com to see all of the cards and the t-shirt that was designed for the project. You cannot order them yet, but if you are interested, send an email to hello@parkylife.com

Inspire Me

The second thing happening this week is that Twitchy Woman was asked by the PMD Alliance (Parkinson’s and Movement Disorders Alliance) to take part in their Inspire Me series of online video discussions. I will be on this Wednesday, Sept 4 at 4:30 PDT. Registration is required to participate. Go to PMDAlliance to learn more about it and to register. I think the session will be recorded so that it can be watched any time afterwards. I will get back to you with the link for that.

So, what fun things have you been up to lately?
Mariette Robijn

Words of Wisdom from a 4 year old

Why does Grandma walk so silly? Why does her head bobble when she walks?

my 4 year old grandson, Evan

Sometimes we do not notice our symptoms, we are so used to living with them. Sometimes it takes someone else, even a 4 year old, to point out to us that yes, when we suspect that changes are occuring, it is actually happening and is not just a figment of our imagination.

My grandson’s statement was so funny that I found that I was laughing more than crying about it. So I asked Mr. Twitchy, who is usually quite observant, if he noticed my head bobbing when I walk. No, he had not noticed it. But he had noticed that my posture was not as good as it should be. And that my tremor, especially in my right foot, has increased. That one I was aware of, because I use my right foot in driving and it sometimes does not calm down until the second dose of Sinemet late in the morning.

So what is a Parkie to do?????

I knew that my meds were not as effective as they were a year ago. I have been on the same daytime dose of Sinimet for 5 1/2 years, which is actually pretty amazing. Lately I have noticed that I am having more wearing-off time, and my tremor becomes more pronounced. The worst thing of all is that my tennis game has completely fallen apart.

So does this mean that I am falling apart? Not necessarily. Symptoms come and go, depending on many things, such as stress, sleep, amount of exercise, etc. The last 4 months have been extremely stressful, so it is not a surprise that I am shakier. What can I do to reduce the stress, get more sleep and get back to what is “normal” for me?

Yeah, yeah. I know what I should be doing. But do I do it? Of course not. I do exercise a lot. My diet could be better. I get bored meditating. I much prefer playing games on my iPad. Instead of relaxing, I look for more things to do. That is just how I am. I have a feeling that many other Parkies are the same way. We need to be busy. We find it hard to say no. We don’t just do things, we go all out. There is no moderation here – it is all or none!

So after 10 1/2 years of living with my BFF, Parkinson’s, I can’t complain. I can still keep up with the 4 year old and his 1 year old sister most of the time. Their 3 and 6 year old cousins were in LA last month, and we had a great time with all 4 of them together, even with my silly walk and my head bobbing.

Twitchy Woman

Do you live in Southern California? Check out this upcoming event:

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.