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.

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!

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.

Shaking with Debra Magid

We need to live in the moment. Enjoy it while you can

Debra Magid
Debra Magid with Farrel Levy

Several months ago I attended a Fox Foundation fundraiser which was a film screening about artist and designer, Debra Magid, who was diagnosed with Parkinson’s Disease in 2012. The film, Shake With Me, was directed and produced by Debra’s son, Zack Grant. My Parkie friends and I really enjoyed the film. Watching it almost felt like the camera had been on us. We thought it gave a very feminine point of view of living with Parkinson’s.

For background on the film, here is the description from Zack: 

What started in 2016 as an exploration of Debra’s growth as an artist in the face of Parkinson’s Disease grew into a larger story of creativity, health, family and the will to cope.  Spanning two years of filming, Shake With Me takes viewers on an emotional and physical journey through the many facets of Debra’s day to day life.  Time and the unfolding realities of a degenerative disease dictate Debra’s constantly evolving views on her diagnosis.  Whether she is creating art in her studio, taking a boxing class specifically for PD patients, or talking about how PD has impacted her friends and family, Shake With Me presents a truly raw and honest look at what it’s like to live, endure and succeed despite a life changing diagnosis and a future that is entirely unknown. 
The film is making it’s rounds on the festival circuit and will screen August 8th – 17th at the HollyShorts Film Festival in Hollywood, California. For more information on screenings and and to watch the film’s trailer please visit www.shakewithmefilm.com.

IMG_2333.jpg

I had the opportunity to interview Debra a couple of weeks later. What follows are the highlights of that interview.

Twitchy Woman (TW): I was there with several Parkinson’s friends. We loved the film. It was lovely what your son did for you.

Debra Magid (DM): Wasn’t it? I was just amazed.

TW: We all thought it gave more of a female point of view. Did you feel that it was that way?

DM: I never thought about it that way. I can’t wallow, I just have to move forward and do the best with what I have. I guess that’s a feminist point of view.

TW: I don’t think men would be as forthcoming with how they feel on film.

DM: My son made the film over several years and he was quite secretive about it initially. I kept asking if he would show me something and he kept saying “it’s a work in progress. It’s not ready.” So it was a real leap of faith for me. For my birthday he gave me the 3 minute trailer and I was just blown away. The first time I watched it, I cried. I thought it was so beautiful. He gave me the chance to speak openly and honestly about PD in a way I hadn’t done before

TW: We are the caregivers, we are not used to having them take care of us.

DM: Luckily, so far, that hasn’t been needed. You get the diagnosis and you figure out a way to live with it. My attitude about my Parkinson’s is if you ask me a question, I will answer it but I am not going to say “this is what I am thinking about. This is what I am afraid of.”  That doesn’t do anything for me. If I have to  freak-out I know enough Parkinson’s people who I can go to. My best friends will always listen to me, but they can’t understand.

When I first told my son I have Parkinson’s, I think it hit him out of left field. He had no idea what to make of it. He had no way to process it…. He had not even noticed the shaking.

When I first told my son I have Parkinson’s, I think it hit him out of left field.

TW: How many years after you were diagnosed did he approach you to do the film?

DM: I was diagnosed in 2012. I didn’t tell him for probably a year. In 2016, he was  taking a continuing education class in the city. He came to me and said he was doing a documentary for the class project and would like to make a short film about me. He said he had been thinking about it for a while.  What started as a 5 minute class project grew into a full documentary

TW: If someone else had asked you about filming you, would you have been as open?

DM: I don’t think I would have been interested. It was my son. He would come to the house on Sunday afternoons, put a mike on me and follow me around with a camera. I don’t think I would have been as open with a stranger.

TW: How does your family feel about all of the publicity you are getting?

DM: They are all very excited. My son is thrilled. He sees it through two lenses. One as a producer and one as my son celebrating with me. He is hoping this will turn his career towards being a director. Things are really happening for him now because of it, so we are both thrilled.

TW: How does your daughter feel about this?

DM: She has been away in Australia for most of the past year, so she hasn’t been to one of these public screenings yet. She is very supportive. My husband is also very supportive.

TW: It’s hard for our kids to realize that Mom isn’t always 100% . They expect you to be like you always were.

DM: It is hard for the children to acknowledge that I have Parkinson’s and I am slowing down in some ways. Or is it just that I’m in my 60’s and am slowing down anyway? We’ll never know.

Maybe I am in denial, but I just can’t envision that I am going to end up in a wheelchair. If it happens, I will deal with it then. I see  no point in spending the next 10 years worrying about it.

TW: You were diagnosed in 2012? How long before that did you start noticing symptoms.

DM: I first noticed my left hand shaking in March, 2012 and ignored it, hoping it would go away. By the end of summer,  it didn’t  stop and I started seeing doctors. I saw three doctors before I was prepared to accept the diagnosis.  I still have symptoms only on my left side after 7 years. I see people who tell me that, after 15 years it is still only on one side. That inspires me.

TW: Are you still working?

DM: Yes. I am a designer. It wasn’t till about a month ago when Shake With Me was in the ReelAbilities film festival and the local NBC News station interviewed us, when I came totally out of the closet. I had only told friends and family, not clients, until that point.

TW: What accommodations do you use?

DM: I have difficulty controlling my left hand when typing, so I use a voice system for emails  and texts. For the most part I don’t have to make accommodations.

TW: How long ago did you start your artwork again?

DM: You have to find someway to handle this terrible diagnosis. When my youngest child went to college, I needed to do something, so I went back to making art. The moment I walked into the studio I wondered why I haven’t been doing this for the last 30 years. It felt so natural. It took a while to get artistically back to where I was comfortable. I think it is what keeps me grounded and  happy.

TW: Do you find it is off-time for PD when you are painting?

DM: Yes. I don’t think about anything when I am painting. It is the only time where I am free. If I shake, I don’t even notice it.

TW: What advice would you give other people with Parkinson’s about living well with Parkinson’s?

DM: You have to find something that makes you happy. You have to live in the moment because there is such huge uncertainty. You don’t know what tomorrow brings, so we had better enjoy today. I think PD, like any serious illness, makes you stop and evaluate your life. Parkinson’s makes you ask questions. I feel really lucky because I have a mild case and can do most of what I want to do. I know it won’t be that way forever. I see no point in obsessing now about a future possible decline

TW: What came across in the film to me is the positive attitude that you have. “We need to live in the moment. Enjoy it while you can. ”

Watch the trailer by clicking on the image below.

To see more of Debra’s artwork go to http://www.debramagid.com