When an emergency strikes, are you ready?

An emergency evacuation makes you realize you have a lot of junk, so you save a few photos and other memories. Most things can be replaced.

Steven, Getty Fire evacuee

The California wildfires in the last few weeks have wreaked havoc everywhere. Numerous friends of ours were evacuated from their homes in the middle of the night when the Getty fire started. I started thinking about what would I do? Am I prepared? What do you take with you when you don’t know when you will be able to return to your home?

Several of the boxers in my PD boxing class live in the hills above the Getty Center and did not come to our classes last week. When I saw Steven on Tuesday, I asked if he had been evacuated, knowing that he lived in that area. He looked visibly shaken by the experience, which he said was a nightmare. His home is above where the fire started and he could see it spread quickly.

The fire began around 2:00 am. The police came minutes later with their sirens blaring to tell people to leave their homes immediately. Steven does not recall whether he was awakened by the police or by the smell of smoke from the nearby fire.

The first thing he did was call a neighbor to find out where she was going. Her doctor’s office in nearby Santa Monica was open in the middle of the night for those who had to flee. Then Steven and his family gathered up their kids and he went in search of his PD meds. After shoving everything into a bag, they left and headed down the hill to the doctor’s office, ahead of the flames.

Once they were safely out of the area, Steven realized that he did not have his wallet, which meant no ID, credit cards, cash, and more. He could not go back home to get it. He said the experience was very disorienting, and the only thing he could think about was to take was his Parkinson’s meds with him.

The next morning, Steven and his family moved into a friends home for the duration, not knowing when or if they could get back into their home. He says that they were very fortunate to have friends with a luxurious, comfortable home that was big enough for Steven’s family and another family they were all friends with. The only alternatives were local hotels which were very expensive or community centers.

The evacuation was disorienting, as Steven said, and also crazy and nervewracking. They did not know if they would be out for 2 days or a week. After 2 days, he was allowed to go back to his home with a police escort to retrieve some things. Because they were with very good friends during this ordeal, they had some good laughs, and even some gallows humor. So this trip back to the house to get things they needed was dubbed “the trip to get everything of value before the house burns down!” The winds were expected to shift that night and turn the fire towards his home. But they got lucky, the winds died down and so did the fire. Steven said that an emergency like this makes you realize that you have a lot of junk. You need to save a few photos and things that are valuable or are memories. Most things can be replaced. Two days later, after 4 days with friends, the family was allowed to move back home.

How did all of this affect Steven’s Parkinson’s Disease? He said the whole experience is more difficult for people with health issues because they have much more to deal with. He was more disoriented than usual, as he stated earlier, which was probably a combination of PD and crisis. It did not increase his shaking and because he thought clearly enough to take his meds with him, he never missed a dose. Between taking care of everything with his family and the terrible air quality from the fires, exercise was not possible. Overall, Steven feels that he got though all of it ok.

The one thing that was missing in all of this was an Aware in Care Kit that is provided by the Parkinson’s Foundation for free. If Steven had one he may not have forgotten his wallet. The Aware in Care kit has forms to fill out with your medications and other important information. There is also room to keep bottles of all of your prescription medicines. I keep prescription bottles with about 4 days of meds in mine for emergencies. As long as you have the prescription bottles, you can always get refills. I also use my kit when I go on vacation because it is ready to go with everything in one place. For more information or to order yours, click here.

We are thankful that only a few homes were destroyed in the Getty fire and that Steven and our other friends who had been evacuated have returned home. Let’s hope that this is the last of California’s devastating fires this year.

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.

10 things that can help you cope with your new diagnosis of Parkinson’s Disease

Many bloggers write about what you can do to cope with a new diagnosis of Parkinson’s Disease. We all have a different take on the issue, so if you have just been diagnosed, look for other blogs with similar titles. As they say in the Parkie world, we are like snowflakes, no two of us are alike. Each one of us has different symptoms and responds differently to medications and therapy. By reading several different blogs, you will get a broader perspective about your new companion, PD, which will be at your side for many years to come. So here are some of my suggestions for living well with Parkinson’s.

You have just been diagnosed. You walk out of the doctors office in a state of shock and the reality of it doesn’t sink in until after you get home. So many unanswered questions and your next appointment is 6 months or more away. What can you do?

Well, there are actually a lot of things that you can do before you see your doctor that will help you understand your new constant companion and to feel better about it. Before you do anything else, try to make a follow up appointment sooner if possible. Make sure that you bring someone with you who can help ask questions and take notes for you. Prepare a list of questions to take with you. We all forget to ask key questions if we don’t write them down. Click here for a worksheet from Health Monitor that you can use (scroll down the page to get to it).

Twitchy Woman’s 10 recommendations for the newly diagnosed:

1. Exercise. I can’t stress this enough. Exercise has been shown to be the most effective way to combat the effects of PD. If you are already exercising, good for you. See if you can increase your level of activity – the more you push yourself, the better the results. If you have not been exercising, start slowly. Walk around the block. Add distance and speed as it becomes more comfortable for you. Add different types of exercise to your routine. Varying what you do on a daily basis is good for your brain and your body. Most importantly, find what you enjoy doing. If you don’t like it, you won’t do it. My exercise routine is a combination of Boxing for PD, regular yoga classes, tennis and a Peloton bike.

2. Continue to do what you did before your diagnosis. PD may eventually slow you down, but for now, don’t let it stop you.

3. A good diet. Check Dr. Laurie Mischley’s website for recommendations for a Parkie diet.

4. Get out of the house. Loneliness is the #1 cause for a rapid decline with PD.

5. Find a mentor with PD. Ask your doctor if he/she can recommend someone living well with Parkinson’s who you can talk to. We have all been in your shoes and understand what you are going through. A mentor can answer your questions and be there for you when you need a friend.

6. Go to a support group. This may not be your thing, but try it anyway. There are a lot of different types of support groups out there and you may find new friends with PD who will become your support system.

7. Find a class for Parkies – boxing, dance, yoga, etc. The best way, in my opinion, to find your way through the maze of PD. The people you meet in these classes will become an important part of your support system. They know what you are going through. It also keeps you from being isolated (see #3) and gives you something to look forward to.

8. Go online and look for a few blogs and websites that you can trust and relate to. Beware of those trying to sell you a “cure”. Some good websites to start with are Michael J Fox Foundation, Parkinson’s Foundation and Davis Phinney Foundation. For a list of blogs I like, click on the Resources tab.

9. Read a good book about PD. Click on the My Books and Things I Like page (above) for recommendations. Two books I will recommend you start with are Parkinson’s? You’re kidding me, right? One woman’s unshakeable belief in overcoming a shaky diagnosis! by Sheryl Jedlinski andBrain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman. And order Every Victory Counts” from the Davis Phinney Foundation. It is free and a good resource.

10. Go to an educational program about PD. The 3 foundations above all sponsor educational programs, as well as The American Parkinson’s Disease Association and local Parkinson’s groups.

I hope that this will help. The most important thing for you to know is that you are not alone on your journey with PD. Don’t hesitate to reach out to me or to others with Parkinson’s Disease. We are there to help you.

More thoughts on the WPC in Kyoto

There were many inspirational moments at the WPC.  I have already written about some of them, and will highlight a few more today.

The most inspiring speaker of the WPC was Dr. Linda K. Olsen, who gave the keynote speech at the opening.  Dr. Olsen lost both of her legs and and arm in a car and train accident over 30 years ago.   Many years later she was diagnosed with Parkinson’s.  Her indomitable spirit is amazing.  Enjoy the video of her speech from Tuesday night.  Turn up the volume, because it is a bit muted.

Thursday, June 6

Thursday at the WPC started early.  Ronnie Todaro, from the Parkinson’s Foundation was presenting at Hot Topics at 8:00 am.  Her presentation “A Closer look at the unmet needs, research and care priorities for Women with Parkinson’s” was about the Women and PD Study that I had been a co-chair of for the last two years.

Getting a shout-out from Ronnie Todaro at her Hot Topics presentation was the highlight of my day!

I then went to the PD Movement Lab with Pamela Quinn, which was terrific.  Here is the description of the session from the program catalogue:

“Using a wide range of dance moves, great music, and practical cueing strategies, we use a wide range of dance movements, wonderful music and practical cueing strategies, we challenge the body, defy our expectations, and  Challenges the body, violates our expectations, and enhances our spirit.”

Mr. Twitchy and I went to a showing of the film “Kinetics” (https://www.kineticsfilm.com/) by Sue Wylie.  Then went to get our Bento box lunches for the day, only to find out that there was a glitch with the caterer, who did not provide enough and they ran out of food!  After scrambling to find something to eat, I missed almost all of the noon talk by Nobel laureate Shinya Yamanaka on  “Current status of iPS cells and efforts for medical application”.  I will have to watch the video later.

My final session of the conference was a round table discussion on “Staying positive and engaged after a Parkinson’s diagnosis, advice from a PwP and care partner.”  I decided to check it out because one of my Parky friends was leading the discussion.  Since there was a Japanese interpreter at the session, most of the participants were Japanese and much of the time was spent translating.    I think everyone got something out of the session, but it was hard to tell because of the language barrier.  I had to leave a few minutes early to catch a train to Tokyo.

One thing I learned today is that I apparently missed some very good sessions throughout the three days for various reasons.  Will have to catch up by watching what is available on Youtube. Right now, you can view some highlights by Sarah King at by clicking here. At the end of the conference it was announce that the next WPC will be in Barcelona from June 7-10, 2022.

What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

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

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

64038.jpg

  • Watch for the Women & PD TALK outcomes here in the next few weeks!