it's december already

OK, blink and it’s mid December already. Not that it’s been a highly exciting year, in fact with the pandemic it’s been a pretty low key one for me. But I did get my Christmas tree up early this year and bought most of my gifts, which makes me way ahead of my normal Christmas game.

We enjoyed Thanksgiving at home with family with the usual favorite foods. My son Bronson tried a new pumpkin pie recipe from Claire Saffitz which was fantastic. It’s made with browned butter and caramelized honey. My baking projects so far were Dorie Greenspan’s Spiced Molasses Cookies which are just classics and Cookie & Kate’s Coconut Macaroons. I keep them in my outdoor freezer and allow myself one cookie a day (mostly)!

Last week I spent some time manning a booth at the Young at Heart Expo. Our local Parkinson’s Association took a booth to help spread awareness. There were a number of people who said they have a family member with PD, but their family member doesn’t know much about it or isn’t doing much about it. Particularly older people, and that they sort of feel like there is not much you can do, it’s just a part of getting older.

That was alarming to me, because there is so many things that can be done to help us live better lives with PD. To know that many people with PD aren’t getting the information or just feel that there is nothing they can do, breaks my heart and reminds me that in addition to finding a cure, bringing more awareness and reaching more of our PD community about what they can do today, is just as important. The best part was talking to PwP who were just happy to meet someone else with PD for the first time. It was an enjoyable time and we made lots of new connections.

I’m keeping my holiday reading light and fluffy this year. The heavy hitters can wait until January so these are the books I have on deck. The Santa Klaus Murder by Mavis Doriel Hay who was a novelist of the golden age of British crime fiction. It was originally published in 1936 and is Agatha Christie ish. The Secret Book & Scone Society by Ellery Adams is a good one. Nothing like a cozy murder mystery set in a book shop with descriptions of good food. Lastly a non fiction book, The Barbizon: The Hotel That Set Women Free by Paulina Bren, which is a history of the famous hotel in New York that housed many famous women from the 1920’s through the 70’s.

I hope you’re keeping up your exercise, keeping connections with people in your lives, and finding something new to learn this week!

traveling with parkinson's

I’m traveling this week to visit my son Austin in San Francisco. I’m so excited to spend time with him and it’s the first trip that I’ve taken since the pandemic started. Plus, I get to wear a sweater (trust me, if you live in Hawaii, it’s a big thing).

I’m fortunate that my symptoms are pretty manageable so I won’t have to make too many preparations for traveling, but I do want to be prepared and make the most of my trip. My right side has more motor problems like tremor and dyskinesia, so I’ve chosen a seat on the plane so my right side is either next to the window or the aisle. It’s less distracting to the person next to me and makes me feel more comfortable during the flight. If I’m on a long flight, I like to be on the aisle because it’s easier to get up and stretch my legs or use the restroom.

Traveling from Hawaii always takes a long time with many being overnight flights, and I cannot sleep a wink on a plane. Which means I’m a wreck when I arrive, so I try to plan my trip with only waking hour flights. That can mean I have to add a few connections and/or stay overnight on a connection but for me that works out much better than losing a nights sleep.

Next is packing. I’ve got my hospital kit for an unexpected hospital trip which I highly recommend if you don’t have one. For home or traveling, it’s free in the US, you just pay for the shipping. If you’re out of the US there are some free downloadable forms and you can create your own bag.

Take photos of my medication bottles, ID, Covid-19 vaccination card, & credit cards in case I lose any of them I have all the information. Also a tip for even at home is to take a photo of your Covid vaccination card and your ID in the same photo. When I go somewhere that requires it, I don’t have to fumble looking for both.

Check my phone apps that I use for traveling and make sure the passwords are auto loaded, and any credit card information in the app is ready to go. For this trip I’m using Uber/Lift, my airline app, google maps, and the TSA app which is the government travel app. Another tip is before I leave home I go onto google maps on my computer and I pin/star all the places that I plan to visit. Then it’s easy to locate when I’m looking at the map on my trip. But the funnest part is that when you’re done with your trip, you can look back at the map and you have an instant travel log.

Pace out my day. I tend to have a laundry list of things I want to do but that can lead to burn out, so I plan out down time. I also make sure I don’t stop exercising on my trip. The mornings are usually the best for me before the day gets busy. I’ve got my laptop so even in a hotel room I can get in a good workout.

Here are a few sites with good information on traveling with Parkinson’s. Hope you have a good week. 💖

Parkinson’s Foundation

Davis Phinney

Michael J. Fox

summer reading, eating, & gardening

How was your summer? Mine was pretty mellow and will continue into October in Hawaii, but I’m still looking forward to my pretend fall season by seeing at all the gorgeous fall fashions online. Chelsea boots, camel trench coats, cashmere sweaters, all look wonderful to wear.

I read a lot but I feel like it was slow paced this summer. A few books I enjoyed were The Joy Luck Club by Amy Tam. A beautifully written story of four Chinese women, who in 1949 were immigrants living in San Francisco, and started a club where they got together and played mahjong, nibbled on dumplings and talked. They each share their inner thoughts and secrets, all told in mesmerizing storytelling.

The Storied Life of A. J. Fikry by Gabrielle Zevin. If you like books about people who work and live around books, then this if for you. A.J. lives above the bookstore he owns on tiny Alice Island. His wife has recently died and sales aren’t going so well. But things start happening that change his life. It’s heartwarming and tells the tale of second chances and learning to love again.

The Woman in White by Wilkie Collins, published in 1859. It’s one of the first mystery novels written and was sometimes called a “sensation novel”. When I read an old book, I prepare myself that the language might be a little bit of a slog to get through but it’s a surprisingly easy read at over 600+ pages, so don’t let that deter you. I enjoyed it very much.

Summer eating felt really good. I ate a lot of grain bowls for lunch and found the simple formula of grains, beans, a cooked veg, a raw veg, and a dressing lead me to many delicious variations. The other thing I’ve been enjoying is putting tons of fresh and dried herbs into my dishes. The garlic chives in the photo above from the garden were one the handful of things I’d throw into my cooking that added a pop of flavor. These Iranian Herb Fritters from Yotam Ottolenghi were on regular rotation. I feel much better when I’m eating well, which in turn helps me manage my PD symptoms better.

This week I want to “design my fall season”. Choose a few books that will get me in the fall mood, pick a few recipes that incorporate apples, warm spices, and fall flavors, and see if there is anything happening in town that I’ll want to do. Have a beautiful week. 💖

imperfection

What do you see when you look at the photo above? Do you see a worn out floor with chipped paint? Or do you see the beautiful patina of a room with many stories to tell. When I’m looking at a garden, I gravitate towards the slightly tousled ones, where the plants are overflowing their beds and the garden furniture is weathered, or the slight mismatch of things in a home accumulated over time, instead of everything perfectly matched.

In Japan they have a phrase called wabi-sabi, which loosely means a view of acceptance in transience and imperfection. Sometimes described as one of appreciating beauty that is "imperfect, impermanent, and incomplete" in nature.

It’s a lovely frame of mind when you start practicing looking for the beauty in imperfection. In a way, it’s sort of seeing the glass half full. Not what needs to be fixed or what would make it better. Just appreciating it for what it is. In addition to actually things, it can include how we look at people, including ourselves, and situations or events in our lives.

Hope you see something beautiful today. 💖

photo source

dancing as exercise

The suggestion of dancing seems to bring out a strong reaction from people. They either say they love it or they something like “I’m not a dancer”. It’s a declarative statement which seems to mean they have never been a dancer, not a dancer now, and could not possibly be a dancer in the future.

So when I saw this article about how dancing can help PD symptoms, I thought what terrific news that is. The second thing I thought was that a whole bunch of people are going to think “I’m not a dancer”. Some of that feeling might be because they don’t feel like their good at it or have any rhythm. Some of it might be cultural. Some cultures don’t have dancing as a normal part of their lives so it may be uncomfortable or feel silly, while others, dancing is done by everyone from young to old, at celebrations and holidays.

When my son Bronson moved to Brazil, he described how wonderful it was to see everyone let loose during Carnival, without a sense of embarrassment and out of just pure enjoyment. I remember when I was in Mendoza, Argentina during a new year celebration at a restaurant. An elderly man just got up and started dancing and before you know it, his whole family was up and dancing. It was a delight to see.

Dancing has been around since ancient times and is done for many reasons including celebration, communication, and was a form of passing down oral history. There is something about it that just makes you feel good. It also helps with proprioception which is sort of your body-brain connection or your sense of self-movement and body position. And of course it’s fun.

The study says it doesn’t take much, a little over an hour a week. So you can slowly incorporate that into your schedule if you’re new to it. There are also many different options to start. Dance for PD looks like they have many locations and online classes and YMCA’s usually have various dance classes. I started taking an online Zumba Gold class once a week, which is not as intense as their regular class, and it’s a blast. The great thing about online classes is that you can keep your camera off, if you’re shy or don’t feel like your dancing is ready for the world yet.

Or how about ballroom dancing? How about just put on half an hour of music in your living room and get your groove on. The electric slide, the two step, if you want to go down a fun rabbit hole, google dance tutorials.

So I hope you give dancing a try. Our break dancing days may be behind us, but we can still enjoy ourselves and do something positive for our PD. 💖

the championship game

This weekend was the championship tennis matches at Wimbledon. If you don’t watch tennis, Wimbledon is one of four Grand Slam tournaments which are considered the top tournaments in tennis. I watched the matches with enthusiasm as I do every year. Now, I don’t play tennis, but I love watching championship games for many sports.

The very best of their sport, after spending many years of training, effort, will, and drive, play in a high pressure, see what you’re made of game. You see the awkward first few shots as the players try to work out their beginning nerves. You see celebration in winning shots, frustration in missed hits, and you see one of the most interesting things to me, is what they do when their down or behind. Championship games are many times won in the defense. Not what you do when you up, but what you do when you’re behind.

When you’re behind, it’s easy to think that you’re losing the whole game, feel the weight of it all, focus on what you aren’t doing versus what you are, or can. You feel more pressure to ramp it up to get back the advantage. But champions know that when you’re down, instead of getting ramped up, it seems like they almost slow down. They focus only on the point they are playing, not letting everything else overwhelm them. They stay with their game, in the moment, focus on problem solving, and they never give up.

We can use the same fundamentals in living with Parkinson’s. It can be easy to get lost in the overwhelming challenges that PD brings in our lives. To feel the pile on, where the littlest defeat can feel like a mountain. But we can practice staying in the moment and focus on winning just the point in front of us, and never give up.

Have a lovely week. 💖

is it hot in here or is it just me

⭐ The summer heat is in full bloom in many areas, including mine. Although I don’t like temperature, I love the long days and try to garden early in the morning or late afternoon when it’s a little cooler. In the morning I do a garden walk around and see the little changes. Yesterday there were little strawberry guavas. I leave a bowl on my counter and nibble on them throughout the day. Green onions, basil and the last of the little spicy radishes, they’re delicious pickled. The gardenia flower is a favorite. Even though my sense has diminished, I can still smell these beautiful flowers.

⭐ Have you been keeping up on the controversy about the FDA granting authorization to Biogen for their Alzheimer’s drug Aducamunab? Here are two very interesting reads from Science of Parkinson’s and Tomorrow Edition.

⭐ Easy meals are perfect during the summer and this Salmon Salad from Dinner-A Love Story has been a favorite this year.

⭐ During the pandemic, like everyone else, I exercised mostly at home. I tried different online classes including kickboxing, Zumba, HIIT, and yoga. My usual schedule was pretty typical working out pretty hard several days a week and have days off in between so that your body has time to recover. That was fine during my life pre-PD, but in the last few years that wasn’t working so well for me. I noticed that I’d work out hard and for the next couple of days I was overly tired and it just didn’t feel good. Which lead me to start re thinking why and how I should exercise, and to find a way that it would be enjoyable and rejuvenating, not energy zapping. My goal for exercising is to keep my body healthy, keep up my strength, endurance, and flexibility, to help me live a long and high quality life with PD. It’s also to help reduce stress and improve sleep and something I want to do with consistency and look forward to.

So I started changing my routine to a more moderate pace and time frame and increased the number of days to six days a week. Monday through Friday I do about 30 minutes of moderate exercise, on Saturday I may do the same or something that’s longer or more intense, and then rest on Sunday. After doing this now for about six months, I am so happy with this regime. I look forward to exercising every day because I know it’s not going to overtax me and instead it actually makes me feel good afterwards instead of tired. I also don’t have to think is it an exercise day or not, so the consistency keeps building on itself. We are all PD snowflakes so this is just what works for me. But if you are struggling with your exercise schedule or having a difficult time starting, I encourage you to try different things until you find the right one for you.

⭐ PD Symptom of the Week - This month’s favorite (not) symptom is I have weakness in my right arm and leg. My symptoms like many people are more pronounced on one side of my body, and it’s a chicken and egg scenario that I don’t which is causing which. I have problems with my right knee, shoulder, and gait. So of course I favor my left arm since it’s stronger, which makes my right arm weaker and round and round we go. I’ve been consciously trying to force myself to use my right arm more on everyday tasks like yesterday when I was vacuuming. The fun never stops.

⭐ Lastly, my sister gave me some nail polish strips. If you have a hard time painting your nails because of your tremor, these might help. Their pretty simple to put on, there is no drying time, and they last a long time. I find that the light colors are more forgiving and don’t have to cut perfectly.

If you’re in the US, Happy 4th of July weekend! ❤️

Weekend PD Notes

Hello lovely friends, what are you up to this weekend? Marc and I are enjoying having his parents visiting this week. It’s also my mom’s birthday so we’re having a birthday lunch on Sunday.

🌟 Last week there was a post on the World Parkinson Congress blog by Mariam Bram. The title of her post is Shame and Stigma of Living with Parkinson’s. I love how she describes what she calls “radical acceptance: the act of living authentically with my vulnerabilities embraced, including Parkinson’s and all of it’s symptoms and limitations”. Read the post here.

🌟 The WPC also held its virtual congress. In addition to the in person event they hold every three years, they will also hold yearly conferences virtually. It has 68 events with lots of topics from science to wellness. It’s available online until August 19th and you can watch sessions anytime. I particularly enjoyed the Living well with Parkinson’s sessions.

🌟 The Parkinson’s Foundation, in collaboration with the American College of Sports Medicine, has created new exercise guidelines for people with Parkinson’s. At the bottom of the article is a handy poster that you can click on and save as a PDF. If you’re new to exercise, or have been falling behind because of the lock down, don’t be daunted. Take it in small steps and do a little exercise every day and build up. As the saying goes “What you do every day matters more than what you do once in a while”.

🌟 @yopdclub on Instagram has some great inspirational quotes from all sorts of interesting people.

View this post on Instagram

A post shared by Welcome to the YOPD Club (@yopdclub)

🌟 Lastly, a site called Reasons to be Cheerful. Just what we all need…………. Have a wonderful weekend. 💖

(Image is the Strawberry Cake from Smitten Kitchen that is a summertime favorite of ours)

design your summer

Each year Gretchen Rubin talks about the concept of designing your summer on her Happier Podcast.

There are many great reasons to design your summer. Many book bloggers and podcasts are putting out their summer reading lists. They are full of memories of when they read certain books, because they were at the pool or beach, or maybe on vacation, and reading the book while doing something different made that memory stronger.

Summer time for many of us as kids signaled no school and summer felt more carefree. Our schedule was different, we had different activities. But when we become adults, that feeling can easily be absorbed by our responsibilities and we forget to carve out that feeling of summer adventure, and before you know it, it has passed. Having school age kids at home definitely helped me with that, but now that they’re grown, it doesn’t seem as easy.

I also live in a climate that is similar all year long, so we don’t have the weather markers to remember things by. When someone talks about a memory tied to a summer at the beach, I go to the beach all year so I often don’t have that time association.

A big reason to design your summer is that people with Parkinson’s commonly have apathy as a symptom. It’s easier to let things slip by unless we really push ourselves to make the effort, but once it’s happening we’re usually happy that we did.

So pick an arbitrary time that summer is starting for you and make a list of few things that you’ll do this summer. For many in the U.S., the Memorial Day weekend is the kick off to summer. They can be big or small but a few things you’re going to do with intention. They can be date specific like we are staying at a beach cabin next month for a weekend and I’m using that as my summer kick off. It could also be something like instead of walking in your neighborhood, you’ll walk once a week at a new park, take an online or in person class, make a summer reading list, cook three new dishes with summer fruit, start that new hobby, visit a few museums, have coffee with a friend, whatever you want. But write it down, be intentional, and enjoy your small or big summer adventures.

I’ve even taken my design my summer into my wardrobe. I don’t have a winter wardrobe. I have a wardrobe for when it’s hot, or really hot. So I started breaking up my wardrobe into capsules with my imaginary seasons and it’s been fun to pull out my outfits for the next season that I forgot I had.

~ Ask questions, seek answers, make friends.

Hope you have a wonderful weekend. ❤️

aloha friday: may 7

Happy Mother’s Day to you moms. This weekend we are going to bring brunch to mom and hang out with her for a bit. Hope you enjoy your weekend.

⭐ Interesting article about the Mediterranean & MIND Diets and how it may benefit people with Parkinson’s.

⭐ Don’t laugh, but I’ve been really enjoying reruns of Columbo with Peter Falk. It’s a murder mystery show that ran in the 70’s and had a fantastic rotation of celebrity guest stars. Each episode was like a movie and some of the plot twists are fantastic or ridiculous, but are so comforting to watch.

⭐ I just finished Black Rabbit Hall by Eve Chase. It’s sort of a modern day Daphne Du Maurier ish book. Another really good one is Salt Sugar Fat by Michael Moss. It’s a fascinating book about the lengths that the food giants will go to get us to buy processed foods. He also has a new book called Hooked which I am on hold at the library and can’t wait to read.

⭐ OMG - I’ll pass on these stairs…

View this post on Instagram

A post shared by OUR PLANET DAILY (@ourplanetdaily)

⭐ The Mole Agent was nominated this year at the Oscars for best documentary. Set in Chile, Sergio is an 83 year old man who is hired to go under cover in a retirement home. It’s touching and he is such a charmer. I loved it.

⭐ Here are some great tips on how to read faster.

⭐ “The longer I live, the more beautiful life becomes.” - Frank Lloyd Wright

⭐ Which Parkinson’s symptoms do patients most want to see improved by treatment? This study shows which motor, non motor, and medication issues are the most problematic.

⭐ Hallelujah wide leg jeans are in! Please don’t bring jeggings back….

spring musings

Are you feeling spring where you live yet? The weather has been perfect the last month. Sunny and clear with cool breezes. My gardening time has been sublime. Hours of listening to a good audio book or podcast and weeding away. My little joke as I head out to the garden is to say I’m headed to the office, or church, or my therapist.

I’m in love with my little baby calamansi lime plant. I planted it last year and it’s only about two feet tall, so I wasn’t expecting it to fruit so quickly, but I picked my first handful of these tiny gems. They are about the size of a large marble and have a tart/sweet flavor that is delicious squeezed over your food before serving, and adds a brightness to everything. From a smoothie, a vinaigrette, and it makes a fantastic gin & tonic.

I’ve got a couple of book recommendations. She Come By It Natural by Sarah Smarsh is book about Dolly Parton. It’s an interesting look at Dolly’s upbringing in rural poverty and how it shaped her life and songs, as well as her contribution to class, gender, and culture. I enjoyed it as an audio book. All the Devils are Here is Louise Penny’s 16th book in the Inspector Gamache series. If you’re a Louise Penny fan, you’ll also marvel at how she is able to keep this series continually interesting. The Grit In the Pearl: The Scandalous Life of Margaret, The Duchess of Argyll by Lyndsey Spence, the title says it all. It’s such a different world than mine and I love a good royal biography. If you like this genre you may also like a podcast called Duchess. Emma The Duchess of Rutland interviews other women who lead historic homes of Great Britain.

Since the pandemic started, like everyone else, most of our meals have been home cooked. Even as things open up we are still eating that way and enjoying it very much. Most of our lunches are assembled bowls. I’ll make a number of simple different proteins and vegetables, mostly by roasting them on a sheet pan and then combine them throughout the week in whatever combination I’m in the mood for. The key is having several dressings to keep the variety interesting. The basic formula for the bowl is some grains, topped with veges (cooked and raw), protein, nuts or seeds, dressing. Love & Lemons has lots of delicious dressing recipes. A few of my favorites are the Tahini Lemon Dressing, Green Goddess, & Easy Peanut Sauce. We eat a lot of tofu and one of the ways to add flavor to the tofu is to press it, which takes out some of the water. Then when I saute or bake it, it absorbs the flavor of the seasonings much more. I used to wrap it in a hand towel and then perilously stack pans or my tea kettle on top of it, hoping the wobbly stack wouldn’t fall down. So I purchased this tofu press which is so much simpler. I’m not a big fan of buying kitchen gadgets that I rarely use, so this is great if tofu is a regular food item for you, but otherwise the first method works fine.

Lastly, how are you feeling? My off time has been more frequent lately. It’s typically twice a day in the late morning and mid afternoon. I’ve been experimenting with altering my food schedule, activities, etc. to see if anything helps before I add or increase my medications, so we’ll see how that goes. I hope you enjoy the rest of your day. 💖

Yes I want to exercise today!

April is Parkinson’s awareness month and with it comes much new connection and shared information. Last week was Hawaii Parkinson Associations annual symposium which was held virtually this year. The keynote speaker was Jimmy Choi. As you may already know, Jimmy is a world class athlete and has participated on American Ninja Warriors for several years and is also a person with Parkinson’s. He is a passionate advocate for PD and the power of exercise in the role of helping manage our illness and increase the quality of our overall health.

I’ve seen Jimmy on social media and American Ninja Warriors and I’ve also seen clips of him talking here or there, but this was the first time I’ve heard an entire speech of his and it was fantastic. There was one part where he used a backpack and it’s contents as an analogy to symptoms of PD, which was brilliant.

If you’d to watch, click here. I promise you, you’ll be motivated to get up and exercise whether you have PD or not.

how do i feel in my off time

Off time in Parkinson’s is when your medications are not working optimally and you experience more symptoms. Although not everyone with PD experiences it, most of us overtime will.

I read a recent post in Parkinson’s News Today by Dr. C, and in it he describes his off time. What I found so interesting is that he breaks it down into four phases, with each phase described in specific detail. He is really present in what he is feeling and has found strategies to help him work through it.

Up until I read his article, I handled my off time completely the opposite. I tried to ignore it or push through it, thinking that focusing on it would just place more importance on it than I wanted. I used “feeling wonky” as my catch all term for most of my motor and non motor symptom off time. But after I read the column I can see the value of digging deeper into it. I practice mindfulness as part of my morning routine where I either meditate or sit and do nothing but just think (which is sort of a meditation but different). It’s basically trying to stay present, sit with my feelings, with no distractions or judgements.

So I decided to try Dr. C’s approach and see if I could stop and focus during my off time and describe it in writing. I tried for several days and I didn’t get very far. I basically wrote, “stronger internal and external tremor, brain fogginess, inability to concentrate, and body weakness”. It was a lot harder than I thought trying to parse out each feeling. It’s such a jumble of things happening at once. But just writing out that short sentence was helpful to me in understanding it a bit better, and by understanding it better, I can start trying things that if not alleviate them, at least deal with it better.

I think of it similar to how people have dealt with pain management or panic attacks. To not try to run from it, but to sit with it. It’s definitely an “aha moment”.

Have you ever seen or been the parent who tells their little child who is crying, gasping for breath and can’t string a sentence together, “use your words”. Well I’m going to try and use my words and continue practicing awareness during my off times, and describe them writing. Is this something that you’ve tried and had any success with?

reading, watching, listening

Here is a round up of things I’ve been enjoying lately. I’m always looking for new suggestions, so if you have anything you’d recommend, please let me know. A friend of mine last week said he thinks he has watched every single show on Netflix this last year, which is what it feels sometimes when you’re scrolling through the feed trying to find something good!

Webinars

Dr. Laurie Mischley does extensive research on PD and food. I try to watch anything I can with her and always take away a little new nugget of information. This webinar was presented by APDA a few weeks ago. The theme is Neglected Clinic Topics: things your PD provider should be talking to you about but probably isn’t.

The Science of How the Body Heals Itself with Dr. William Li- Interesting talk about how our diet can impact and help heal itself. I enjoyed how he gave insights on specific foods and impacts on different illnesses. If you enjoy it, at the end he talks about his new book, which I have just reserved at my library.

TV Shows

Behind Her Eyes (Netflix)- This British six part series was brilliant. The story starts out as the usual mystery thriller sort of premise and keeps turning into something different. I won’t share the plot with you because the less you know about before watching, the better. Super interesting to the very last line in the series. Side note, the wife in the series “Adele” is singer Bono’s daughter. Yes I am getting old.

Lupin (Netflix) - This is based on a French book series of the gentleman thief Arsene Lupin by Maurice Leblanc. It’s a light take on a James Bond sort of show but much more fun. Omar Sy who plays Lupin is fantastic. It’s in French so be sure to turn the language to French on your Netflix settings and then read the English subtitles. I didn’t know you could do that until after I watched a few episodes, which were dubbed in English, which is so weird to watch.

For All Mankind (AppleTV) - When Marc first suggested this, I thought ugh, another astronaut show. But this one is really good. It takes a few episodes, but with each episode, the suspense of how things are going to turn out builds. Based on the astronauts and their families from the early Apollo missions, it mixes real life and fictional events so you don’t know whats going to happen next.

Books

The Lazy Genius Way by Kendra Adachi - Kendra has a popular podcast where she gives her take on how to life hacks that I enjoy. They are practical things like how to clean your bathroom or kitchen, different household routines, batch cooking, etc., that if you are a self improvement junkie like me enjoys. Her motto is to be a genius about the things that matter to you and lazy about the things that don’t. Her style is warm and casual and with small children, is flexible in her approach.

The Best of Me by David Sedaris - This fabulously funny book is a compilation of stories and essays from David’s twenty-five year+ career of writing about his life. He has a unique way of capturing the humor, the heartache, the depth and silliness of different moments in his life. You must listen to the audio version because his voice lends so much of the story. I’ve read many of his books and I couldn’t tell you from which book I read different stories. It’s not a knock on his books but the opposite. They are all wonderful and are a continuation of his genre creating style of writing.

Podcasts

Everything is Fine - It’s a chat show for women over 40. The hosts Tally & Kim talk about all things that most women over 40 are experiencing in their lives. They have interesting guests who share their perspectives of how their lives have grown and changed over time. One of my favorite episodes was when they had Stacy London as a guest. Stacy was the host of the hugely popular TV show What Not to Wear, and shares her challenges after the show ended. It’s honest and insightful.

Don’t Ask Tig - Tig Notaro is a hilarious comedian who has this deadpan, sort of Bob Newhart style of humor that makes me crack up. She and a guest give advice and answers to questions that people write in. You’ll find me most Saturday mornings giggling while I garden and listen to the show.

Enjoy your weekend ;)

akathisia in parkinson's

I’ve always been a busybody. Not the dictionary definition as a meddling or prying person, but literally a busy body. I’m always doing lots of things, starting new projects, and physically moving around. So a couple of years ago when I started getting this odd feeling of not being able to get comfortable sitting still and feeling the need to move, I was a bit confused.

My previous need to move was based on more of my personality and liking to do many things. This feeling was different, it was a physical feeling of restlessness and the need to move around. There are so many little motor and non motor symptoms in Parkinson’s, it can sometimes be difficult to discern what each of them are, particularly when you have several of them. I had also never read or heard anyone else talk about this symptom other than as described as restless leg syndrome. This didn’t feel like it was only my legs, but my entire body, starting from my central core.

It seems to happen more during midday through the early afternoon and things like working on the computer or reading a book are challenging. Well I finally found a name for it, Akathisia. From what I’ve read, it seems to be different from restless leg syndrome as it’s not associated with sleep and also differs from the need to move for relief of discomfort imposed by rigidity or lack of movement. It can be a symptom, in and of itself. According to the National Library of Medicine, it’s a little-studied symptom of Parkinson’s, but interviews with some patients found that 68% of PwP experience it periodically.

Although highly annoying, it’s not so problematic for me at this point that I’m seeking medication, but it’s very helpful to have some clarity on what a symptom is, so I can better communicate it to my support system and health care professionals. I am also trying to plan my day around the times it seems to be most pronounced. Do you ever feel Akathisia?

shall we get some exercise

hanauma bay, oahu

I am always on the search for ways to motivate myself to exercise and ways to keep it interesting. Practice makes progress.

The benefits of exercise are incredible. It strengthens our muscles and bones, keeps us flexible, improves our endurance & energy, improves balance and gait, helps mood, anxiety & depression, helps control weight, reduces your risk for heart disease and certain cancers, improves sleep, digestion, constipation, incontinence, may help slow the progression of PD, and increases our chances of living longer.

With all these benefits you’d think everyone would be exercising, but much of whether we exercise regularly or not, is not based on will power as many of us think. Much of it is based on habits and friction. We don’t decide whether we want to brush our teeth or not each day, we just do it because it’s a habit. The friction is whether we set it up to make it easier or harder. Brushing your teeth is made easier because we keep the toothbrush and toothpaste conveniently in the bathroom near the sink with water. But if we kept them in the trunk of our car and we had to go out and get them, use them, and then return them to the car, we would likely brush less.

So lets start with reducing the friction or obstacles that make it more difficult. Make it easily accessible. If you have to set up a bunch of equipment or drive far, you’ll likely do it much less. The simplest is exercising at home. Whether it’s online classes, walking in your neighborhood, or having equipment at home. Next would be things available near you. Going to classes or a gym near you, a park, or pool.

Next is to figure out what will motivate you. If you’re with people a lot of time, you may look forward to some time alone. If you need extra motivation, you may want a workout buddy or have a set class, so you are accountable to someone else to show up. If you like social media, post your exercise goals and journey there. Your social media friends will be happy to cheer you on. Make less friction by making it easier, and add friction by making it harder to say no.

Then start creating the habit. The biggest reason I see people quit exercising is because they try to do too much, too quickly. When I first started meditating, I started with three minutes a day. That may sound too easy but I knew creating the habit was going to be the hardest part. I did that daily for several weeks before I added on time. Do the same with exercise. Plan your week ahead of time and start slow and don’t increase the time, until you show up without hesitation. Then make adjustments. Remember, you’re creating a lifelong habit.

Pair it with something else. Do you enjoy listening to audio books or have a favorite podcast? Tell yourself you can only listen to it while you’re walking. Same for your favorite TV show and your treadmill. Another great pairing is a walk and talk. Set up a phone call to friend or family member while you walk.

Write it down. Tracking your progress can help keep you motivated. I love to track my progress on everything. It’s a great reminder to see little increments of improvement that sometimes you easily forget or don’t see because they are small.

You can also include more movement throughout your day. Dan Buettner is the author of the book The Blue Zones. In it he discovered seven communities around the world that had the largest amount of centenarians and observed their lifestyle and habits to see what similarities they might have. One of things were daily exercise. Not formal exercise, but movement throughout their day. Once you start taking the stairs instead of the escalator, park in farthest away section of the grocery store, you start seeing all the little possibilities that can add movement into your day. I started cutting my own grass and pruning the trees in my garden and I love all the exercise I get from it.

Have alternatives. My energy level is very different not only day to day but hour to hour. I have a list of things that I can do to exercise, so regardless of my energy, I can do something. Some days I can only manage light stretches and that’s fine. I always feel better doing something.

Lastly, don’t compare yourself to others. Everyone with PD is a snowflake. We are all at different stages in our lives and the goal is to find what works for us, what we enjoy, what we can do today, and not what anyone else is doing. Push yourself to do something small every day, but cut yourself some slack on trying to keep up with others. Do what you enjoy, and that may mean trying several different things before you find what that is. As the saying goes, “how do you eat an elephant, one bite at a time”.

happy new year 2021

I’m working on my list of 21 things for 2021. It’s not meant to be daunting and can be silly or serious, or both. It can have a theme like 21 things you want to do with your family this year, or books you want to read. You can list the smallest thing to something life changing. I keep my list in a notebook that I carry with me, which is one of my favorite things. I used to keep a formal organizer when they were popular but now I just use a blank book and insert my own tabs. Whenever I think of any idea, I jot it down. I’ve got sections for ideas, ongoing projects, notes, food, to do, and it’s my second brain (trust me, when you have PD, you need a second brain).

Exercise is always a part of my list. I’m doing 21 minutes of movement daily in 2021. Of course it can be more, but at least 21 minutes. I have a variety of exercise options from light stretching to intense, so that even on the days where I’m really wiped out, I have something I can still do.

Plan a trip is also on my list. Who knows if it will happen but I want to choose a place, research where to go, where and what to eat, things to do. I say that there are three parts to a trip. All of which are equally enjoyable, which are the planning, the doing, and the remembering. So I can at least enjoy the first part now.

I’ve got things to do around the house and in the garden as well. Things with my family, relationship building, all sorts of stuff. The one thing I make sure of that I have things on the list that are fun. It’s good to have a few things to help push you and grow, but it’s also just as important to have things like “enjoy an ice cream cone with Marc once a month at our favorite little shop, Wings Ice Cream”.

I never complete all of the goals, but that’s not the point. It’s really satisfying to see the things I did complete and gives me inspiration to be creative and make a new list the following year.

I wish you a very happy 2021. It’s been a challenging year, and no doubt there will be a ways to go this year, but there is much to be grateful for.

holidays with pd

Each year I go from refusing to think about the holidays because it’s too early, then pouf I’m scrambling because it’s a week away from Christmas. Not that I have any grand plans this year but I do want to do some seasonal things. Having PD may prohibit us from doing some things but there is still lots that we can do.

We put up our tree and a wreath, and put a few simple decorations like bowls filled with fairy lights and ornaments. Fairy lights are so charming, I want to leave them out all year long. I have a large rosemary plant that needs trimming so I’m making a few small herb wreaths. I wanted to try a hand at making a tropical garland but ran out of brain space and energy on decorating. Speaking of brain space and energy, yesterday I took a half hour nap and then slept for nine hours last night. Go figure. With PD it’s either I have a hard time sleeping or sleep like Rip Van Winkle.

For holiday baking I made my first fruitcake. I know I hear groans in the background but I love fruitcake in all of its variations including Panettone & Stollen. The one I made is a British style fruitcake and the two lovely loaves are luxuriating right now in brandy soaked cheesecloth. I have a fruitcake story that perpetuates the tale that all the fruitcakes are just the same ones being passed from person to person because no one wants to eat them.

One year we were in Mendoza Argentina at Christmas. The hotel we were staying at just opened, so we were one of only a few guests in the entire hotel. In our room was a welcome basket with assorted munchies and a fruitcake. In the afternoon, the maids came in and cleared out the basket and later that evening we went down to one of the hotel restaurants and they had a side table with holiday decorations with a fruitcake on it. The next morning we went to breakfast and there on the buffet, of course what did we see but fruitcake. It became a running joke of seeing our fruitcake everywhere we went in the hotel. We should have given it a name.

I’ve got a couple of holiday movies lined up to watch. I’ve never seen It’s a Wonderful Life, and I love Jimmy Stewart so I’m looking forward to it. The other is a modern movie Love Actually. I know the whole premise of people all getting together for the holidays and fall in love has been badly done a million times, I like this one. What can I say, I love sappy movies during the holidays.

I’m sufficiently in the holiday spirit. We don’t put an emphasis on gifts at all during Christmas. It’s about the generosity of spirit, festive food, and reflecting on the year.

Hope you’re enjoying the holidays.

(image from my name is yeh)

No Time Like the Future

No Time Like the Future: An Optimist Considers Mortality by Michael J. Fox

I just finished reading MJF’s newest book. This is his third best seller, his others being Lucky Man and Always Looking Up. Each one is a memoir and shares the next chapter in his life with Parkinson’s. One of the things I liked most about his book is that it details his perspective and experiences now that he has had PD for almost thirty years.

The last couple of years have been challenging for him with spinal surgery and a broken arm, and he details how the experience has changed his outlook and made him think about his mortality. A broken arm may not seem so difficult in the scheme of injuries, but for someone with a chronic illness it can present many more challenges. He is great at describing his feelings about what its like to depend on others for simple day to day tasks because physically he can’t manage them, and how it can feel demoralizing or embarrassing, but he keeps it in perspective and always adds his signature humor.

I laughed and teared up. What brought tears to my eyes the most were the moments where he reflects on how his disease has impacted his family. I think that is one of the most emotionally difficult things for people with a chronic illness, is the impact on those around them.

Being in his twenties when he was diagnosed and newly married with a small child, and then having three more children after his diagnosis, amazes me. The extra challenges of having Young Onset Parkinson’s Disease and raising a family must be tremendous. He is the first one to admit he could have never done it, without his wife Tracy Pollan, who is the lead in his incredible support system.

I really enjoyed this book and recommend it. The common thread throughout all of his books is gratitude, appreciation and being hopeful for the future. His advocacy of Parkinson’s and willingness to go public has propelled public awareness like no other. I’ll leave you with a quote from another famous person from our tribe.

“It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe” ~Muhammad Ali

giving thanks 2020

I saw a segment on a news show the other day and it was a parent asking his three kids what they are thankful for this year. They thought about it for a minute and then one of them said “I can’t really think of anything but I can think of what was hard this year”. It was honest and probably what many others feel in this very difficult time. Then the father put on a short video of people standing in line at a food bank. A journalist walked through the line and asked a few of them if they were thankful for anything this year and each one had many things they wanted to share. The video ended and it cut back to the kids. You could see a look on their face as thoughts started churning in their heads and they reconsidered their answer. It was a visual glass turning from half empty to half full.

This has been no doubt a terrible year for so many reasons and it’s exhausting. It seems like it’s been a year of pile on of one negative thing on top of the other. So this years Thanksgiving may be a more difficult one for many. But it has also for me, really put to the forefront of how lucky I am and all that I am thankful for. The people in my life are so loving and supportive and are there for me at every turn. Although I have Parkinson’s, I’m incredibly lucky that it’s a disease where I can still live a long and meaningful life. The pandemic has been like nothing I’ve ever seen in my lifetime but in reading about pandemics in the past, I’m thankful that it wasn’t worse. I have a home and lots of food and want for nothing, which many people don’t have.

Thanksgiving this year will be a small affair for us but I think the things that I’m thankful for this year are much more in number and intensity this year. I’m thankful to you for reading my blog. The collective energy of our PD community brings me absolute joy to know that there are others who share our journey together. If you’re spending thanksgiving with others, I hope you enjoy a delicious meal with all your holiday favorites. If you’re spending thanksgiving for one, do what we all really want to do, and have dessert first! Then with any room you may have left over eat something else. Trust me, you won’t regret it and secretly we’ll all be jealous that you did. I wish you a very Happy Thanksgiving.

(image source: Zoe Bakes)