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.

It’s the little things that are so bothersome

I did not trip and fall. I attacked the floor and I believe I am winning. – 

Anonymous

For those of us with Parkinson’s, there are many unexpected little things that continue to confound us on fairly regular basis. Sometimes we can figure out a way to combat the problem successfully. Or not.

Here are a few things that continually get in the way of life as usual for me and some of my solutions, if I have found any.

One of my biggest problems has been that I do not always pick up my right foot enough when out walking. So the curb that was so easy to navigate before suddenly became a black diamond ski run. My toe catches and I go flying! After the first 8 or 9 times it happened, I started to catch on. I had to be more mindful while I was walking, not looking ahead of me, but looking down.

One other little problem with looking ahead is I did not always see the obstacle beneath me. Twice while traveling, and maybe I can blame the first one on jet-lag, I had a major encounter with the ground. In Hong Kong, where the streets are always under construction, Mr. Twitchy and I decided to take the sidewalk rather than the elevated walkways between buildings. While looking at the amazing skyline ahead of us, I failed to see a cover over the sidewalk and went sprawling. A bruised ego, arm and leg were the result. Another trip, I walked right into a sink hole that was about 4 feet deep. Never saw it coming.

Now that I pay more attention when I am out walking, I have a new problem. While looking down, I bump into people and things because I wasn’t looking up. But at least I am not tripping anymore. Maybe a periscope will help.

Do you lose track of time? I get so involved in something, whether it is a puzzle, tv show, reading a book, playing games, that I totally lose track of time. I used to be ready to leave the house early, but not anymore. Because I lost track of time, I can’t find my purse, my phone or something else important that I forgot to get ready. How many times do you get in the car and realize you forgot something? Then it is back into the house to find it, which makes you even later.

Do you have an itchy scalp? That one was not in the Parkinson’s Play Book, but apparently it is pretty common for Parkie’s. I got some relief from a shampoo that was recommended, but it never lasted very long. Last time I got a haircut, my hairdresser used plastic scalp massager on my head while washing my hair. I didn’t itch for several days. I went to the drug store and found one that works well for me. My scalp is much happier these days.

I still attempt to play tennis. But like playing the piano, my hands don’t always cooperate. I take a great swing at the ball, and ……….my hand decides to lose its grip on the racket right at the moment of impact. I have thought of strapping the racket to my hand, but I don’t think that will work. Does anyone have a solution for this?

I don’t think Elton John has this problem

Do you play a musical instrument? Can you get both hands to cooperate at the same time? I started taking piano lessons 5 years ago, the first time since I was 13. I really had not played the piano since my kids were little so it had been probably 30 years since I had played. My right hand was tight from PD and playing the piano really helped open it up. I enjoyed playing again, especially classical music which I appreciate much more now about than when I was 13. So while playing the piano was great for my poor brain, several problems got in the way. My fingers did what they wanted to do – not what I wanted them to do. I could not memorize music at all. And I frequently lose my place when looking up and down between the music and the piano keys. Anyone else have this problem? Have you found a solution for it???

Finally, there is my handwriting. I am grateful for computers and iPads so that I can take notes with a keyboard, or record something to play it back later. As someone who used to do calligraphy professionally, this is the ultimate insult. My handwriting can be good and bad within the same sentence. Of course, when you want to write something that needs to be legible, it is always impossible.

Do you have anything that you would like to share? Little problems that you have found a solution for, or are seeking a solution. Let’s start a conversation. Please respond to this blog or on FaceBook.

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.

Revisiting Breast Cancer vs. Parkinson’s Disease

Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer.

Charity Navigator

October is Breast Cancer Awareness Month. Every year, Bloomingdales partners with several Breast Cancer organizations to raise money for research and treatment with its Give Pink Get More promotion. For $15, you can register your Bloomies card and recieve a gift card at the end of the month for a percentage of your purchases. A win-win for all involved. Even the Bloomingdales logo has a pink ribbon in place of the “L” for the month.

Throughout October the store sponsors events related to Breast Cancer Awareness Month. On Saturday I attended a yoga workshop at my local Bloomingdales before the store opened. The event was extremely well attended by women of all ages. For $10 you could attend the session and take home a pink yoga mat and other goodies.

Almost exactly 10 years ago, I was diagnosed with breast cancer (12/08) and Parkinson’s (saw doctor for symptoms beginning 10/08, diagnosed a year later). As I have written previously, it was much easier for me to come to terms with a breast cancer diagnosis than a PD diagnosis.

Why? There is so much support for women with Breast Cancer that it is almost a badge of honor. Many stores are pushing their “Pink” promotions. I even got an email from Charity Navigator with the following statement: “Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer. With so many organizations vying for your attention, it can be hard to know which ones are worthy of your support.”

Charity Navigator also comments on the fact that many companies are using charities as a marketing tool because it works.

Here are some findings from a 2013 Cone Study on cause-related marketing:

  • 89% of consumers would be likely to switch brands (if quality and price held constant) for one that’s affiliated with a charity, compared with 80% in 2010 and 66% in 1993.
  • 54% of consumers bought a product with a social and/or environmental benefit, compared with 41% in 2010 and 20% in 1993.

For diseases like Parkinson’s and many other “rare” diseases, there is little or no product marketing to raise awareness of the disease. April is Parkinson’s Disease month. Were you aware of that? Not many people are. We have our Parkinson’s walks throughout the year, not just in April. The one in Los Angeles this year is in November, not April. Why are we doing it now? The end result is that our message gets muddied and lost among the many other worthy causes.

Perhaps it is time for all of the PD organizations to work together to create a consitent and timely marketing plan. There is the Unity Walk in NY each April, but as far as I know, that is the only one of its kind in the US that encourages all of the organizations to participate together in April. Yes, it is difficult to coordinate multiple events in the same month, especially in large urban areas that may have walks in 3-4 different locations. So maybe we take the advice from the Cone study and find reputable partners to work with the PD organizations in April to get the word out about Parkinson’s Disease. A green yoga mat with tulips would be a great start! Are you listening, Bloomingdales?

Yoga mat by Bghnifs available at Amazon

On “Being Mortal”

Sooner or later, we will all have to deal with the fact that having any progressive chronic disease, such as Parkinson’s, will require us to make major decisions about where we live, how we live and how much help we will need on a daily basis to live our lives the best way possible. As PD takes more away from us, will we be able to stay in our homes? And who makes the decisions?

I just listened to an amazing book titled “Being Mortal” by Atul Gawande. I had downloaded the audiobook because it had received so many accolades and was a best seller. Then conveniently forgot that I had it. The topic was too depressing and could wait. But then my friends started commenting on how good this book really is, so I decided it was time to bite the bullet and finally listen to it. And it was definitely worth it.

Throughout the book Gawande masterfully weaves stories of his patients with the hard realities of growing older and facing hard decisions about their care. The stories serve to illustrate how things can be handled better than they are in most of American society when it comes to aging and dying. We expect modern medicine to extend our lives, regardless of the quality of life. We treat our parents like children, placing them in nursing homes or other facilities, taking their lives away from them. In contrast, the extended families in many other societies care for their elders. The rise of nursing homes in the US gave us the option of no longer having to care for them ourselves, often leading to inadequate care and a terrible quality of life. Nursing homes became places where people went to die, not to live better when they could no longer take care of themselves.

Major changes in nursing homes began with a young doctor, hired to run a nursing home in upstate NY, who found it totally devoid of life. He was sure that something better could be done for the residents. Bringing children, plants and animals into the nursing home, especially 100 birds and dogs, in a hilariously told story, gave new purpose in life for many who had previously found little to live for.

On the opposite side of the country, in Oregon, the first assisted living facility was started by a woman who wanted to create a place as an alternative to nursing homes for her mother. A place where she would have her own small kitchen and bath where she could remain relatively independent, yet with many of the services provided by nursing homes available to her. Both of these visionary providers changed the way we care for our elderly.

Most importantly, Gawande shows that it is essential for us to listen to what those who are dying truly want as life grows more difficult. Shared decision making between the patient, doctor and the family has become much more common. Hear what the patient has to say and the choices you will ultimately have to make for them will become clear. Equally important, he talks about Hospice, whose sole duty is to make life more comfortable for the gravely ill, often increasing their quality of life and sometimes even prolonging their lives.

With his own father dying of cancer, Gawande asked what was important to him to live for after a difficult surgery. His father’s answer surprised him: he could not accept a life as a quadriplegic, he wanted to be in charge of his world and life. Later, after complications during surgery, the doctor came to talk to the family about whether to continue the surgery. What was the greater risk? Continuing the surgery or doing nothing. Gawande’s previous talk with his father had made it very clear how to proceed.

As I was reading this book, I started to think about how all of this would apply to a person with Parkinson’s. Eventually we will have to make decisions about where to live, what type of care is needed, and what decisions the family will have to make on our behalf. And most importantly, when a major medical decision needs to be made, what outcomes would be acceptable for us. Waiting to talk about it is no longer an option. We need to have an ongoing conversation with our families and care providers about our future now, not when it is too late to share in the decisions.