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

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: