Care Partners and Role Reversals

Family is not an important thing. It’s everything.

Michael J Fox
Ali Elder, Sharon Krischer and
Adrienne Keener MD

In Jnuary, 2018, I had the privilege of working with two amazing young women, Adrienne Keener MD and Ali Elder PT DPT, to plan the Los Angeles Forum for the Parkinson’s Foundation’s Women and PD TALK study. The end result was the creation of the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease. We worked together again to present a follow up program, Closing the Gender Gap, on Sunday at a local hospital. The event, sponsored by the Parkinson’s Foundation and [re+active] physical therapy, presented the research agenda for Women with Parkinsons based on the findings of the study.

An interesting thing occurred. We had originally planned to present this only to women with Parkinson’s. However, a significant number of spouses and carepartners came. So we decided that while the women were doing a reflective writing exercise, we would meet with the care partners. They were so happy to have a chance to talk about their issues that it became clear that having a support system for the care partners is just as important as having a support system for the women with PD. Before we could even ask a question,they immediately started talking, looking for answers and help.

It was an interesting group. Two young men were there with their mother and did not know where to turn for information or help. They were doing the best that they could, but really did not understand what their mother needed. They came looking to learn more about Parkinson’s Disease and how they could take better care of their mother. In contrast, there was a retired doctor who was very knowledgeable about Parkinson’s, but was at a loss about the dementia that seemed to be coming more and more of a problem for his wife. Different issues, same solution. They all needed to find out where THEY could get help so that they could be better care partners.

Many of the care partners were taking copious notes and it was clear that no one had asked them what they needed before. Our planned 10 minutes turned into 20 and the discussion could have continued the rest of the afternoon. We were very happy to help them in whatever way we could.

We had been so intent on talking about what is different for Women with Parkinson’s at our program that we forgot that the issues for their care partners are different too. The only thing that we said during our presentation is that the carepartners need to make time to take care of themselves. We did not consider how watching their spouse or mother with PD slowly decline would have such a profound effect on them. Just as the women experienced the role reversal of going from being the nurturer of their parents, spouse or children, the people we spoke to were also going through a change of identity in their new role as carepartner. Many of them were not ready for this.

There is some help on the horizon. When I spoke about the Facebook group for Women with Parkinson’s called Strongher Women, as a good resource for women with PD, founder Jen Parkinson noted that she will be setting up a companion site for carepartners in the near future.

And when I got home, catching up on my neglected emails, I saw an invitation from the PMD Alliance for an event for Care Partners, Adult Children and family or friends of those with PD and PSP next month in the Los Angeles area. How serendipitous! This was exactly what is needed. Just this morning I received an email from the Parkinson’s Foundation that they will be having a webinar on Coping with Dementia for Care Partners on November 5. It just shows that once you identify a problem, the means for a solution will turn up soon.

The main message that we stated over and over throughout the program, is that no one needs to be alone when fighting Parkinson’s Disease. We are there to support each other. And that applies to the Care Partners, too.

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