too much in & not enough out

We are in a time where many of us have an over abundance of creative consumption. That meaning all the social media we consume, websites, blogs, TV, YouTube, magazines, books, and more. It’s a seemingly never ending supply of information coming to us.

For the last couple of weeks, I just didn’t want to think, read or hear about anything that had to do with Parkinson’s. I enjoy reading the different online forums and sites, and it helps me feel better and have more gratitude. But it was just driving me nuts every time I sat down to read something, I didn’t feel energized like I usually do. So I really thought about why, and realized it was not just about PD but about all the topics that I usually follow. I realized I was a little burned out because lately my consumption input was outweighing my creative output.

When we consume more than we create, that imbalance can make us feel like we’re on overwhelm. It’s important to try and keep up on things but it’s also just as important to spend time creating. It’s an output, a release, and when I say creating it can mean so many things. It can be time spent on your hobbies, gardening, painting, writing. It can mean volunteering or time spent investing on a relationship. It can mean your work or career. All of these things can be a creative outlet, create joy, and a sense that we are contributing to ourselves, our family, our community.

Creative consumption can be positive and we can enjoy spending time doing it but we should also check in with ourselves to see if we are creating as much as we are consuming.

~ xoxo Kai

aloha friday

It’s officially spring! This weekend I’m going to work on planting two grape vines. I have no idea what I’m doing and not even sure they will grow in my area but hey, that’s never stopped me before. I also have a bunch of old movies that I recorded on TCM and look forward to watching an adaptation of Daphne du Maurier’s book Hungry Hill. Hope you have a wonderful weekend. xo kai

~ I made Lidia Bastianich’s mushroom risotto which was absolutely delicious. With the leftovers I’ll mix in an egg, chopped parsley, and parmesan, form them into patties and pan fry them. That with a salad sounds devine.

~I’ve picked up this pair of cropped pants from JCrew and already wearing them constantly. They are super comfortable and will go into summer nicely.

~ Pasta Grannies: These grannies all over the world show you their pasta recipes and it’s just adorable.

~ Here are a few things under $10 that I’m enjoying. Loreal Voluminous mascara, OXO vegetable brush, Post It tabs- I use them in my notebook and it makes it easy to track projects, ideas, & to do lists. Pine tree gardening gloves, the best gloves and at a great price.

~ I came across a new blog called The Shoe Maven. It’s fashion, fitness, & Parkinson’s advocacy. Lovely photos and wonderful outfits from a fellow Parkie! Check it out.

What are you doing this weekend?

forget about it

The more my PD progresses, the more symptoms I get, which reminds me of PD more during the day. So over time, I end up thinking about PD most of the day. Not always in a direct way but it’s just there with me and next to me physically and mentally. Where as in the past when I was working, it would creep into my mind in between doing other things.

So now that I’m home more, I find it even more important to have activities that absorb my attention and focus. To forget about it for a while. For me it’s gardening. I can garden for hours and listen to an audio book or podcast and get lost in the task. It’s my meditation, my church, my exercise, my work. It’s a never ending process and it teaches me patience, and to enjoy it for its imperfections and fleeting moments. I can also extend the enjoyment by researching plants and reading garden books. It also extends into my love of food and cooking and all the rabbit holes I go down with that.

As I’ve written in the past, I have a list of activities that I can do at home. I like keeping a physical list that I can look at. Although I enjoy all of the things on the list, I’m yet to find something as engaging as gardening, as an indoor hobby. So I’m on the search. I’ve started taking an online photography class but most of my photos look like I’m taking them in an earthquake! It’s a fun process and I’m keeping an open mind to organically see what I enjoy. I’d love to hear what are your favorite hobbies?

aloha friday

How was your week my lovely ladies? Spring has sprung and this weekend I’m going on a food foraging hike in Makiki Heights. I’ve been trying to find something like this for a while so I’m excited to see what I will find.

~I just read Michael J. Fox’s interview in the New York Times Magazine and one of the things he said was “…acceptance doesn’t mean resignation. It means understanding and dealing straightforwardly”. Acceptance is an important word when you have a chronic illness. I have been working on acceptance for some time but now realize it’s something we must do over and over again as our situation changes. It’s a process not a one time event.

~I enjoyed making these collard wontons from two red bowls. I used leftover broccoli leaves from my garden and they turned out delicious. If you have wanted to make dumplings, this is a good one to start with because the folding of the wrappers were pretty easy.

~ Check out the Instagram account Cheese By Numbers for the most gorgeous cheese plates and instructions on how to make them.

~ What I’m watching - Free Solo is a super interesting documentary about Alex Honnold’s attempt to climb El Capitan in Yosemite National Park.

~ What I’m reading - The Places That Scare You by Pema Chodron

Hope you have a wonderful weekend. xo Kai

aloha friday

Yesterday was a beautiful day so Marc, Justin, & I decided to hike the Makapu’u Lighthouse trail. You can see from the photos it was a gorgeous day and we even saw whales breaching! We stopped for lunch on the way home at Liko’s in Hawaii Kai and enjoyed our fresh fish sandwiches while overlooking the Hawaii Kai Marina. I slept like a baby last night. I’ve got lots of good books from the library to enjoy this weekend and hopefully see the move The Favourite.

~ Photographer Thomas Jorion captures crumbling Italian villas in these beautiful photographs.

~ This article from The Daily Mail shows how food portions have changed each decade from the 40’s to now. It is mind blowing.

~ It’s citrus season, so why not enjoy a beautiful greyhound cocktail w/fresh grapefruit juice or a salad w/ thinly sliced fennel & orange segments tossed in your favorite vinaigrette and topped w/toasted nuts & shaved parmesan.

~ I love to follow fashion blogger Bibi Horst on Instagram. She is so stylish!

Have a wonderful weekend. xoxo kai

aloha friday

Hi lovely ladies, I hope your week was a good one. Marc and I watched Bohemian Rhapsody and loved it. Rami Malek channelled Freddie Mercury and of course the songs you can’t help but sing along to. I also enjoyed a wonderful lunch with a friend at Arancino in Kahala. We sat outside and the sky was a spectacular clear blue expanse and the day could not have been lovelier.

~ Sad to hear of the passing of Lee Radziwill. Habitually Chic put together a nice montage of photos of her beautiful homes over the years.

~ If you or someone you is disabled, you may be able to get a free lifetime pass to National Parks.

~ Could the phone call actually be coming back?

~ I know many of you live in a place that is very cold right now, so maybe a summer beach read would be just the right thing to whisk you away. I started The Identicals from Elin Hilderbrand and I can feel the sand in Nantucket already. If you’re a mystery book author Louise Penny fan and can’t wait for her next book to come out, Modern Mrs. Darcy has some great read-alikes.

~ If you’ve thought about trying a weighted blanket, Sharon from Twitchy Woman has tried several of them and has an interesting post about it. I’d like to give them a try.

~ This mask from Paula’s Choice is a favorite of mine for the winter. It’s an overnight mask and in the morning your face feels super hydrated and supple. It’s also on sale right now.

Have a wonderful weekend! xoxo kai

aloha friday

We have been enjoying the rainy and chilly weather this last month. I know it’s nothing compared to where many of you are, but it’s the one short time of the year where we can actually wear sweaters. Last night we enjoyed dinner with some friends in Kaneohe at Haleiwa Joe’s. The tiki torches blazing with the soft rain in the background was a beautiful setting to enjoy the delicious fresh ahi. No set plans for this weekend but I would like to take a long walk and catch up on some reading. What are you doing this weekend? xoxo kai

~If you take Agomelatine for depression and have PD, you may want to read this article.

~ Would you like to define your style & streamline your closet? Style Bee has an interesting downloadable toolkit that I’m trying. I just started and am about a week into the 30 day shopping fast and it’s interesting how often we are tempted to purchase something.

~ I can’t help it but for some reason I am drawn to recipes for anything chocolate pudding/mousse/molten cakeish. I just save and save these recipes but never make them. Well I’ve decided to make Chocolate Puddle Cakes from Smitten Kitchen and can’t wait!

~ Is it me or is Everlane taking over the fashion blog world? No wonder, with these cute cropped wide leg pants, who can resist?

~ Here are a few of my favorite parkie instagrammers right now. Rock Steady Fighter is super motivational and when I get lazy, she makes me want to get up and get going. Also Yiisha Arroyo, talk about stylish. Wow.

~ Books I’m enjoying right now. At Home: A Short History of Private Life by Bill Bryson, The Noma Guide to Fermentation by Rene Redzepi, and Only In Naples by Katherine Wilson.

~ “Happiness lies not in finding what is missing, but in finding what is present.” - Tara Brach

Living w/Style & Parkinson's: Allison Smith

If you haven’t seen Allison’s blog “The Perkie Parkie”, you will definitely want to start following it after you read her interview. Having PD can be difficult at times, and Allison lays out all of her challenges in a open and very humorous way. I love her writing style and want a “wolfpack” just like hers!

Hi Allison, tell me a little about yourself.

Most of my family lives in the Phoenix area of Arizona.  I live in Laguna Niguel, which is a city in Orange County, California and yes, I do live 30 minutes away from Disneyland (the happiest place on earth). I work in a Neurology and Pain Clinic as a Psychotherapist.  But currently I am on disability recovering from a medical setback. I am looking forward to coming back to work this Spring.  I enjoy working with people and sharing stories. This lead me to starting my blog “The Perky Parkie”. I realized how many people were looking for support and the internet helped me expand my reach to all parts of the world.  There is a power of sharing your story.    

 What is your journey with Parkinson’s?

I moved from Tucson, Arizona to Irvine, California for graduate school in marriage and family therapy in 2005.  I started noticing symptoms when I was in my master’s program.  I was 29 years old but didn’t get my “official” diagnosis until I was 32.  I got diagnosed in March of 2010 and then had Deep Brain Stimulation the following month.  Some people are shocked to hear that I went through DBS surgery so quickly after my diagnosis.  They view DBS as a last alternative, but I didn’t want to lose muscle mass, mobility, and difficulty with gait, and wait until I was just “bad enough” to get DBS. It didn’t make sense to me at my early age. My Dad says I am the only girl who would go into brain surgery and come out with a job because after I had DBS, I knew I wanted to get involved in the community that I now belonged to.  

Your blog is incredibly personal and very funny, which is why I think so many people gravitate to it and comment on the posts. I’ve seen 50-100 people comment on recent posts which is amazing. When did you realize that your blog was really connecting with people and did that impact the way you blog?

When I started blogging, (6 years ago) I was just hoping to connect with people in my local community.  I never realized how far my blog traveled until I had a few experiences that changed my whole vision for my blog.  I had a man who contacted me through my blog.  His wife had just been diagnosed with Parkinson’s and they lived in the Canary Islands.  They had a huge lack of resources available to them and had turned to the internet to find information.  With each blog post, this man would translate my words to his wife.  I work in a Neurology and Pain Clinic which allowed me many resources available, so I created a care package stuffed with pamphlets, books and research studies (and of course a signed copy of my book, “I am not Contagious”).  It was such a great feeling knowing that I had made a difference in a complete stranger’s life.   

Despite having your fair share of health challenges, you’re also a licensed family & marriage therapist and a wellness coach! How do you find the energy to give so much to others while having PD? 

I was diagnosed with Juvenile Rheumatoid Arthritis when I was 13, Ulcerative Colitis when I was 18, Colon Cancer at age 24, Parkinson’s at age 32, full hysterectomy at age 36… you can say that I have had a few challenges.  Ha!  I knew that I wanted to help people as I was facing my own health challenges.  I get energy and a feeling of happiness when help others… it gives my life meaning. But with that said, if I have a bad day, I still give myself permission to have an off day.    

 What are you enjoying right now?

Ohhhh, difficult question.   I have many things that I am enjoying right now.  Right now the weather is warm in California so my dog Crash and I head to the lake down the road from my home and walk around.  Right now all the geese, ducks, squirrels and bunnies are about to have their spring babies, I just love watching how life just continues.  

 What is one of your challenges right now?

I have had a challenging medical setback.  I have had 7 medical procedures with general anesthesia and am facing 2 more, one of those happening this week.  It has been difficult to stay positive and hopeful.  But with my strong wolfpack… I have been able to get through it.   

 Do you have a morning or evening routine that helps you start or end the day well?

About an hour before I go to bed, I get into my comfy bed and read a book.  It’s like my wind down time. As long as I don’t read a Dean Koontz book right before I go to bed… I usually can’t put his books down.  

 Do you have any favorite beauty products? 

Must haves are E.O.S lip balm and either a hair tie or hair clip. Because my hair is so long, it’s nice to get it out of my face.. you know, so I can see what’s in front of me. 

How would you describe your style in three words?

Fashion Style: Comfy, simplified, practical.  Writing Style: quirky, honest, respectful.    

 What is something you enjoy doing for self-care?

Love, Love, Love getting massages.  They not only help with the rigidity, but they allow me to shut my brain off… even if it’s just for an hour.   

 You make us laugh on your blog. What makes you laugh?

Animal videos.  I can get sucked into the vortex of animals doing silly things…  I can on YouTube for hours.  Llamas spitting on people, pygmy goats in pajamas, cats taking baths, you name it.  I can’t help but laugh.  Now imagine if you could get a llama to spit on a pygmy goat in pajamas, while a cat in a bath tub watches.  Epic!

the infamous “Crash”

 What or who inspires you right now?

My friend, Gina.  She is a single mother, who also has her mother living with her, but she is always there to care for me when I am having an off day.  She is a friend who is so giving and only wants to help.  A true definition of friend. I’m blessed to have her in my life.    

 Your favorite animal, a dessert you love (other than frozen yogurt!), and a song you love.

Got to say a sloth.  They always look like they’re smiling and I can relate to moving so slow.  Dessert is anything sweet.  I love frozen yogurt… but that is a given. Song I love: Imagine by John Lennon.

Thanks Allison! You can see Allison’s blog at www.theparkieperkie.com and on Facebook at @perkyparkie.

P.S. Don’t miss Crash’s guest post on The Parkie Perkie!

aloha friday

everyday life - yuuta toyoi

Happy Friday my beautiful parkie friends. This weekend I’ve got a couple of books I’ll be enjoying, including If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth?: Courage, Tenacity & Love Meet Parkinson's Disease by Nan Little. I came across Nan’s site and she has some beautifully written essays. I’m sure I’ll also watch a movie. TCM is having their 31 Days of Oscars showing some great Oscar winning movies every day this month. If you haven’t seen Whatever Happened to Baby Jane with Bette Davis or High Society with Grace Kelly you’re in for a treat.

~ If you or someone you know with PD that has young children, here is a booklet that might be helpful in discussing it with them.

~Two books I just finished and would recommend. What Would Mrs. Astor Do? The Essential Guide to the Manners and Mores of the Gilded Age by Cecelia Tichi & In Pieces by Sally Field. By the way I recently started tracking the books I read two ways. I list them in a small notebook and I also use Goodreads. How do you track them?

~ More book talk. Did you know that you can download ebooks that are out of copyright for free at the Gutenberg Project? There are so many fantastic books! Great for a parkie with time on our hands.

~ If you’re looking for a new eyelash curler this review can help you choose.

~ Great & Fascinating Beauty Advice from Seniors. Love it.

~ I’m going to give these collard wontons a try this weekend. I’ve got broccoli leaves from the garden that I will use in place of the collard greens.

~ Ina Garten just posted her valentines day love song list on Spotify. I’m listening to it as I write this post. If I had a nickel for every time I said how much I love Ina…………….

Have a wonderful weekend and I’d love to hear what’s going on in your world this weekend! xoxo kai

aloha friday

well it’s super bowl weekend. i’m not a big football fan but it’s fun just to join in on the festivities and gives me an excuse to eat in the front of the tv. my most ambitious project is making soup and will consider that a win. have a wonderful weekend! xoxo ~kai

~ this baked camembert appetizer from the nyt magazine sounds delicious.

~ if you haven’t read it yet, simon’s blog the science of parkinson’s site is a great site for information about PD research. his yearly look ahead post gives a really good wrap up of all things going on in once place and what to watch for this coming year.

~ all is abuzz for the movie roma. i loved it.

~ do you often look at a book on amazon or goodreads and then open another tab in your browser to see if it’s at your local library? library extension can instantly tell you if the book is available at your library without opening another page. how fabulous is that.

~ interesting article about how to make small talk. the comments are interesting too.

photo source here

5 ways to start your day with intention

we’ve all had the mornings where we turn off the alarm and off we go. the day becomes a series of whatever pulls us hardest in that direction. and some days that just cannot be helped. but for the most part i find that spending some time in the morning thinking, reading, writing, & planning make a huge difference on how the rest of the day goes. for those of us with a chronic illness, the day can be one extreme or other, either trying to keep up with a busy schedule or not feeling able to do much, so i think it’s particularly beneficial to help set the tone as best we can. here are 5 ways to start off your day with intention.

1. when you wake up before you get out of bed, take a moment to get your bearings. take 5 slow and deep breaths in through your nose and out through your mouth. say quietly in your mind “i’m grateful for a new day”.

2. set aside time in the morning just for yourself. no tv, no emails, no social media. if you have kids or a job that may mean getting up a little earlier to carve out the time.

3. read a few pages of something inspirational or positive. i get my little corner of the sofa set up with my coffee & some gentle music in the background.

4. think, write and plan. whatever that means to you. you may enjoy journaling, reviewing goals, plans, to do lists, & schedules. even if you’re staying home for the day, choose a few things that you’ll do.

5. meditate- even just 3-5 minutes is beneficial.

off you go! have a beautiful day. ~kai

project: painting my lanai floor

my lanai downstairs off of the family room was a little blah. it needs a renovation but until then i wanted an inexpensive way to add a little interest. i’d always loved seeing beautiful wood floors painted with all sorts of patterns and the one that i kept gravitating towards and thought was doable was the checkered floor.

i ended up combining instructions from two different sites. i used the method from southern hospitality to measure the squares and the method to tape and paint the squares from this old house.

you can read the specific instructions on the sites above and see which suits you better. it said the project would take 2 days but it took me 5 days because measuring and taping with shaky hands was an interesting process. but slow and steady it came together. each day i did one task. the brown base coat was the first step. the floor is concrete so i used a floor and porch paint. next was marking the squares with a white pencil. i used painters tape to then mark the outline of each square i was going to paint white, was the most time consuming part of the project. once that was completed i was ready to paint the squares white.

taking the tape off was fun! i let it dry for a day and then put a mat clear coat on top to protect it and voila! i’m very happy with the way it turned out. it was a manageable project and doesn’t take a lot skill. so if you’ve got a porch, old wood or basement floor that needs a quick sprucing up i’d highly recommend giving it a try. trust me if i can do it, you can do it!

aloha friday

ahh the new year. i’ve so enjoyed reading all the year end wrap ups and different methods of new year planning on the sites that i follow. two of my favorites are the lifestyle files and gretchen rubin. it is endlessly fascinating to me as a habit junkie.

my sister and i enjoyed the play avenue q at the manoa valley theater this week. we had such a fun girls night and enjoyed dinner at paesano first. this weekend i have a couple of new projects i want to start. the first is making a batch of miso paste and ko chu jang paste. the other is painting squares the floor of my downstairs lanai. happy weekend!

~ my cherry tomato plants are going crazy so i made this easy and delicious cherry tomato relish, and we have been slathering it on everything this week from pork chops to scrambled eggs. i halved the amount of vinegar and sugar and added a sprinkle of chili flakes. if you’re looking for a free form recipe, take a large bunch of kale or chard and slice into thin strips. saute a few cloves of sliced garlic in a pan with olive oil and add the greens. pour in half a cup or so of broth, s&p, cover and simmer until greens are tender. add a few tablespoons of cream if you’d like. pour over a mound of brown rice or canned beans and add a fried egg on top and voila, a quick and delicious dinner (and don’t forget to add a dollop of the cherry tomato relish from above).

~ what i wouldn’t do for adorable chanco’s hair!

~ i’ve heard much about the author tana french, so i picked up her first book “in the woods” at the library and am enjoying it immensely.

~ during my morning routine i’ve been listening to this super chill spotify playlist. it’s such a pleasant way to start my day.

~ the new season of finding your roots on pbs started and the stories are so heartwarming.

~ i bought this lipstick on a whim standing in the checkout line in j.crew and it’s such a favorite of mine now. i’m so paranoid because it seems every time i find the perfect beauty product, they discontinue it! it’s a silky slightly matt pinky peach that is a great everyday color.

favorite books of the year

i not only enjoy reading but love to read or listen to what others are reading. it seems that for every book i read, i add another dozen to my “to be read” list. hey but that’s half the fun. i love listening to the what should i read next podcast and anne bogel finished 200 books this year! wow. but no matter if i read 1 or 200, my only requirement is that i enjoy the book. if i start reading and i’m not able to get into it, i stop. sometimes it just doesn’t fit the time in your life, so don’t stress it. there are too many other books out there to read.

here are the books i’ve read this year. i’ve enjoyed all of them since i completed them but i’ve put a star next to the ones that i enjoyed the most. let me know if you’ve read any of these and what you thought of them or give me some of your recommendations because of course i need to add more books to my tbr list!

Non Fiction:

dominick dunne: a life in several acts - robert hofler

the curated closet - anuschka rees

*audrey at home - luca dotti = this is a beautiful love letter from a son to a mother with her family recipes. audrey seemed like such a gracious person.

johnny carson - henry bushkin

*blue zones - dan buettner = describes the lifestyle and health habits of areas in the world where people live the longest.

the purple diaries: mary astor and the most sensational hollywood scandal of the 1930’s - joseph egan

it’s all relative: adventures up and down the worlds family tree - a.j. jacobs

epic tomatoes - craig & sara lehoullier

bunny mellon, the life of an american style legend - meryl gordon

*living in a foreign language - michael tucker = you may remember him in the tv show la law but his love of italy just oozes out in this light hearted and charming book.

the hygge life - gunnar karl gislason

garden home - p. allen smith

soulful simplicity - courtney carver

the total book of houseplants - russell c. mott

secret gardens of hollywood - erica lennard

*why not me? - mindy kaling = listen to this on audio as mindy is so funny and disarming.

how to be well - frank lipman

*me talk pretty one day - david sedaris = anything by david sedaris is good, especially on audio because he has such a distinct voice. they’re usually funny or touching essays about his life.

let’s explore diabetes - david sedaris

the stranger in the woods - michael finkel

the murder room - michael capuzzo

the blue zones of happiness - dan buettner

a fine romance - candice bergen

calypso - david sedaris

i’ll be gone in the dark - michelle mcnamara

the art of southern charm - patricia altschul

is everyone hanging out without me? - mindy kaling

*perseverance - tim hague = had to throw one in for the fellow parkies. tim talks about his journey with pd and how being on the tv show the amazing race changed his life. his story is so positive and inspirational.

*the gifts of imperfection - brene brown = this was my favorite non fiction book this year. the title says it all!

wallis in love - andrew morton

*bad blood - john carreyrou = fascinating real life story about the rise and fall of elizabeth holmes and her billion dollar company theranos. i hear they are making a movie version but read the book first.

paris in the fifties - stanley karnow

american kingpin - nick bilton

*killers of the flower moon - david grann = real life story of the osage indian nation in oklahoma in the 1902’s. their vast wealth made them a target of an intricate plan of murder.

american fire - monica hesse

this is marketing - seth godin

Fiction:

*maude - donna foley mabry

the swans of fifth avenue - melanie benjamin

*charlie & the chocolate factory - roald dahl = i don’t usually read children’s books but i saw this at the library and it was a childhood favorite of mine so i picked it up to see if it holds up. it totally does.

the bette davis club - jane lotter

*still life - louise penny = this is the first of a mystery series and ended up reading three of them this year. these were my favorite fiction books this year.

*a fatal grace - louise penny = these get even better the more i read.

major pettigrew’s last stand - helen simonson

*rebecca - daphne du marier = this is a classic for a reason. after you read the book, watch the movie with laurence olivier and joan fontaine.

her royal spyness - rhys bowen

gone girl - gillian flynn

a royal pain - rhys bowen

the dead wake - erik larson

beneath a scarlet sky - mark sullivan

the no. 1 ladies detective agency - alexander mccall smith

*a tree grows in brooklyn - betty smith = a beautiful novel about the coming of age of a young woman in brooklyn in the 1920’s. voted one of the best 100 books by the great american read and rightly so.

emma - jane austin

royal flush - rhys bowen

*a rule against murder - louise penny = by now you see this is the 3rd louise penny book i read this year. by this book you really start investing in the characters inspector gamache and the others in three pines.

the mysterious affair at styles - agatha christie

*rules of civility - amor towles = i think i just like books set in new york in the early 1900’s.

royal blood - rhys bowen

tears of the giraffe - alexander mccall smith

the cruelest month - louise penny

the secret adversary - agatha christie

~ happy reading!

year end wrap up

2018 has been an interesting year for me both professionally and personally. i’ve been slowly wrapping up my work in real estate over the last few years, but this year i’ve retired completely. i’ve emptied my office and let go of anything i needed for work, both physically and mentally. at the beginning of this year i chose two words that would describe my sort of theme for the year and they were “accept” & “embrace”. i tried to weave those themes through all aspects of my life and they turned out to be the perfect words for me this year.

it has been a wonderful year for spending time with family. bronson & austin were able to take extended visits home. we took several incredible trips to korea, japan, san francisco, new york, and a gorgeous driving trip along the southeast coast of the u.s. visiting six states. all in all its been a wonderful year that i’m very grateful to have experienced. for the coming year, the words that i’ve chosen are “growth” & “connection”. i’m still planning how i’m going to incorporate those themes, so i’ll do an updated post after i’ve done some thinking.

as for parkinson’s, it seems that this year there has been an increase in awareness. i’m seeing more and diverse people talking about their pd publicly which helps connect our community and shine a spotlight of awareness. there are all walks of life who have pd and when you see someone with pd that you have things in common with, it helps us feel like we are not the only one. there are many studies going on and really interesting ways that researchers are looking at pd. this article in the tomorrow edition talks about how they want to change the way PwP are involved in research. the fda also approved a new treatment called inbrija this month.

i think the most important thing that has continued to happen this year is that there are more ways than ever for people with parkinson’s to connect with each other. there are more support groups where you can meet face to face, and not only have general support, but specific groups like young onset , women’s groups, and groups for dbs. there are online support groups and forums where you can make great connections with people all around the world and in your own backyard. there are social networks where you can read and see great photos & videos. there are more walks for awareness, groups that bike, run, box, you name it. as the research world moves forward and we of course look forward to better treatments, slowing progression, and a cure, we have to continue living our lives to the fullest now.

i’m looking forward to 2019 and all the wins and challenges that will go along with it. what are the two words that you’ll use as your theme for the year?

~ kai

aloha friday

it’s been a busy couple of weeks as it probably has been for you too. i’ve really been enjoying all the activities but notice that i do need to pace myself. that’s probably one of the biggest frustrations with parkinson’s for me right now, is not being able to do as much as i’d like. but i’m doing my best to take the time when needed to rest and recharge so that i’m ready for the next activity. speaking of which, there will be lots more eating and merry making this weekend. i wish you, my fellow parkies a very happy new year! you have been a tremendous source of support, laughter & inspiration and i look forward to another year of sharing our stories on this journey together. XOXO ~kai

here are some best of 2018 lists to enjoy:

~ 50 ways women over 50 enjoy fashion by brenda kinsel.

~ favorite feature stories for 2018 by serious eats.

~ anne bogel’s favorite listening experiences of 2018.

~ best books of 2018 by goodreads.

~ npr’s best tv shows of 2018.

~ allure’s best of beauty 2018.

~ the 24 coolest tech gadgets of 2018 by gizmodo.

~ the world’s 50 best restaurants of 2018.

~ top 50 movies of 2018 by imdb.

19 for 2019

A light show over the Sumida River in”Firework Show at Ryogoku” by Kiyochika Kobayashi

it’s that time again. time for goal planning for the new year. i have always loved goal planning and over the years have incorporated many different styles and methods. so i thought it would be fun to do it with parkinson’s in mind. 19 for 2019 is a popular goal setting idea of choosing 19 goals. here we go.

1. join a boxing for pd class.

2. join a support group.

3. join an online pd forum and share your experiences with someone who could use your help.

4. sign up with the michael j. fox foundation trial finder to see if you can participate in a clinical trial.

5. commit to doing a little exercise each day.

6. find something to laugh at each day.

7. make a donation or give of your time to a pd organization.

8. eat food, not too much, mostly plants.

9. meditate for 5 minutes a day.

10. write down one thing each day that you’re grateful for.

11. sign up for a podcast about parkinson’s.

12. practice being present.

13. order or put together an aware in care kit.

14. see your dentist.

15. keep a journal of your changing symptoms and write down the specific items to discuss before each doctor visit.

16. make a new pd friend either in person or online.

17. if you shop with amazon, sign up with amazon smile which donates a portion of your purchase to the MJF research foundation or any other charity at no cost to you.

18. learn and practice how to fall.

19. whatever it is you tried and didn’t finish. it’s ok. just begin again.

    ~ now it’s your turn. i’d love to hear what are your goals this year?

aloha friday

four days until christmas and thrilled that my youngest son austin is home for a visit. my mom is counting the days and can’t wait to feed him. that’s what grandmothers do. for christmas eve dinner, we’ve decided to have a fondue dinner which will be fun and different for us. in hawaii the cuisine is a mix of many cultures. so for holiday dinners it’s common to have traditional food mixed in with korean, japanese, portuguese, filipino, chinese, & many other cuisines. my mom is korean so no matter what the meal, if it’s at her house there will most likely be kim chi and other little ban chan which are little side dishes served tapas style. happy holidays to all my fellow parkies.

~ 27 breakfast recipes for a hungry holiday crowd.

~ fda approves focused ultrasound for pd. this is interesting and something i want to read more about.

~ this is a great tip for list makers - the rule of 3.

~ can’t wait to see mary poppins returns.

~ happy holidays!

Living w/Style & Parkinson's: Sharon Krischer

Biking with Mr. Twitchy

Sharon Krischer has an incredibly full life. She has a wonderful blog called Twitchy Woman, which gave me the inspiration to start my own blog and is a motivating advocate for Parkinson’s. So I was thrilled that she agreed to do my first interview in a new column called Living w/Style & Parkinson’s.

Sharon tell me a little about yourself.

I grew up in St. Louis, met my husband, Joel, at the University of Illinois and followed him to University of Michigan where he went to law school.  I live in Beverly Hills, California with Joel, otherwise known as Mr. Twitchy, and our dog Lucy.  We have 3 daughters and 4 grandchildren.  I have a master’s degree in Audiology and had my own Calligraphy and stationery business for about 15 years.  I then got involved with non-profit organizations, serving as president in several of them and found my niche training others to become leaders. We love to travel and have been all over the world in the last 10 years.  

Sharon & marilyn, stylish at the parkinson’s moving day walk

Enjoying the cold fall weather in Quebec

What is your journey with Parkinson’s? 

I started noticing some odd things in the spring of 2008.  I would be writing and my foot would start to shake, and it intensified after breaking my other ankle in August. In January 2009, my Internist sent me to a Neurologist who said I had a Parkinson’s like tremor.  He put me on Requip and sent me home with no information about PD.  I was also diagnosed with breast cancer that same month and had a lumpectomy and 6 weeks of radiation.  It was not a good month for me.  When I came out of my fog from everything about 6 months later, I went back to my internist, insisting that I needed to change doctors.  He then sent me to a Movement Disorders Specialist, who diagnosed my PD, changed my medications and gave me a lot of information.  I have been with her ever since. I have been fortunate that I have tremor dominant Parkinson’s, which progresses much slower than other types.  10 years later, I am still doing well. 

I began to get involved with the PD community about 5 years ago when I started getting phone calls and emails from people asking if I would talk to their relative, friend, co-worker who was recently diagnosed.  Those meetings led me to start my blog, Twitchy Woman, in March 2015 to reach out to a broader audience.  I never imagined that I would still be writing the blog almost 4 years later.  And the blog has created many opportunities for me, including being an official blogger for the upcoming 2019 World Parkinson Congress in Kyoto.

PD women looking good!

I love reading your blog and in it I can see how active you are in the PD community. What would you say those who are thinking about being more involved and what is a good way to start?

Start in your community – go to a support group, join a PD exercise, boxing, yoga or dance class to meet others with PD.  Attend local programs put on by a local or National PD organization.   Find out how you can get involved in one of the organizations at the local level.  The Parkinson’s Foundation, Michael J Fox Foundation, APDA (American Parkinson’s Disease Association) Brian Grant Foundation and Davis Phinney Foundation are all National Organizations that are good to reach out to.

What are you enjoying right now? 

My grandchildren!  Actually, all things considered, things are pretty good for me, and having Parkinson’s has opened up a whole new world of opportunities. I have met many new friends with PD, we laugh together and cry together, we understand each other.

 What is one of your challenges right now? 

My tremor in my foot is acting up again, creating some problems for me.  I did not start to take Sinemet until 5 years ago and have never increased the dose.  I am worried that my symptoms are starting to get worse.  My other challenge is to slow down.  I often take on much more than I should because I forget my limitations.

Do you have a morning or evening routine that helps you start or end the day well?

I take my dog on an early morning walk, which at this time of year, is before the sun comes up.  It is so quiet and peaceful.  A good way to start the day.

Do you have any favorite beauty products?  

I use mostly Laura Mercier products.  However, my dermatologist has a cleanser that she developed, which has really helped relieve my dry skin.  And for my itchy scalp, a beauty supply recommended Klorane Sos Serum with Peony for Sensitive and Irritated Scalp, which works better than anything else for me.

How would you describe your style in three words? 

Casually stylish, contemporary, youthful

 What is something you do for self-care?

It seems that everything I do is for self-care:  yoga, boxing, tennis.  Exercise 5-6 days a week.  Massage every two weeks.  Piano lessons, which are supposed to help my brain.  Playing tennis with friends every week, leading an active life. 

On one of her travels around the world

With Ninja Warrior, Jimmy Choi

What makes you laugh? 

 My husband and my grandchildren!

 What or who inspires you right now?

 I am inspired by all of those people with PD who work hard to live the best life possible with a chronic disease.

 A food you love, a dessert you love, a song you love. 

I love berries, pasta with a great tomato based sauce and almost anything chocolate, especially good brownies.   A song I love:  Your Song by Elton John

Thanks so much Sharon!

Don’t miss Sharon on her blog at Twitchy Woman and her Facebook page @twitchywoman. Sharon will also be blogging for the World Parkinson’s Congress this June from Kyoto, Japan.

keeping a positive attitude

it’s always amazing to me to see how positive, people with pd or other chronic illnesses can be. they are the first to offer empathy, constantly spreading positive messages, and looking for the bright side in tough situations. and that’s in spite of having some really tough days. or maybe it’s because we have some really tough days.

on those tough days you try to go with the flow, ride it out, work through it, keep yourself occupied, remember that it could be worse, put it into perspective, feel sorry for ourselves, or get irritated that it prevents us from doing the things we want to do. any and all of the above. boy, no wonder we’re so tired. but we always seem to remember that the storm too shall pass, and there will be sunshine again.

i look at Instagram and see the daily posts of inspiration and encouragement. I read all the wonderful blogs of people with pd, or an online forum who share their personal journey and i can’t help but feel better at that moment. so the next time you’re having a tough day, connect with someone else who has pd and most likely their support will be just the thing you need to feel a positive attitude again. i’d love to hear if you have had an experience with how someone else with pd helped you through a tough day? ~kai