forget about it

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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

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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

Living w/Style & Parkinson's: Maria De Leon

 
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Dr. Maria De Leon is well versed in Parkinson’s in many ways. She is a doctor, mentor, advocate, teacher, author of Parkinson’s Diva: A Women’s Guide to Parkinson’s Disease, and her blog is Parkinson’s Diva. Her story is inspiring!

Tell me a little about yourself.

I am a retired physician, mom, author, cancer survivor, Parkinson’s patient and advocate. I live in east Texas with my daughter, husband, niece and cat extraordinaire. I am a Diva at heart. I like making people laugh and feeling good about themselves. I am thrilled that I am about to publish my third book, Parkinson’s Diva: Hello Possibilities-A Journal for Your Daily Walk with Parkinson’s.

What is your journey with Parkinson’s?

It began nearly three decades ago first as a student, then doctor, then caregiver of my grandmother, and ultimately as a patient myself. It has been a wild ride with ups and downs, fraught with frustrations as well as many joys. I have had to learn to reinvent myself after I had to quit working as a Physician, due to medication side effects & other medical complications. Along the way I rediscovered my talents, gifts and flaws. I love being a mom – this by far has been the best and most challenging job I have ever done. Motherhood has also has been the most rewarding experience of my life (mind you I have assisted in brain surgery for many Parkinson’s patients). Working to see my daughter grow up and blossom into the beautiful young lady she is today has been one of the most crucial aspects in my fight against PD, so that she and others don’t have to go through what I and many others are experiencing each day with PD.

 
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You have a unique perspective because of your experience as both being a doctor to/and a person with PD. What is something that you wish health care professionals had a better understanding of about their patients and vice versa. What is one thing you think patients could have a better understanding of when it comes to their health care professionals?

Being a doctor and patient has been an interesting phenomenon because I have come to realize that most often my thinking and needs as a doctor are directly opposed to my needs as a patient. Doctors have strict rules and methodical steps to arrive at conclusions and treatments which usually take time to develop & learn. While we as patients don’t have the time or energy to wait weeks or months to find the right diagnosis or treatment for our symptoms, because life waits for no one. Figuring out ways to bridge that gap has been a challenge which I have tackled head on to help educate both sides, to shorten the distance to offering better care strategies, increasing understanding of science, as well as social aspects of having an illness while attempting to move science forward in hopes of finding a cure soon.

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What are you enjoying right now? 

I am enjoying being a mom most of all. I am also enjoying the freedom that comes from being a woman who no longer has anything to prove. Having shed most of the fears and insecurities that come from being a young woman, I feel free to be myself in the fight against PD while finding ways to empower other women to do the same using their own unique strengths. I like who I am flaws and all. I am grateful to God for all the people he has put in my life. I like discovering new things about myself & others around the globe. I am learning to trust the journey knowing that while God teaches me a life lesson in one area of my life, he then asks me to use this knowledge in another area to help others. For instance, I am now teaching a class for women to help them become ‘Moms who are Free’. The same principles I stress to mothers to become free and better parents are the same foundations we must rely on when raising kids in the mist of a chronic illness such as PD (mainly giving unconditional love). I feel as if I have reached an age where I am less afraid to try new things & explore new areas to expand my universe outside PD.

What is one of your challenges right now? 

One of my challenges is letting go as a parent to give more freedom and independence to my young adult daughter. Another is living well, being fruitful and content with my life despite the constant physical challenges imposed by PD– to be able to maximize my strength, energy, and time when all I want to do is lay on the couch and veg out! I would love to remain ever present in the lives of my loved ones while pursuing my other passions such as writing, teaching/lecturing, traveling, mentoring and having fun with friends and family. This means adjusting medications on a regular basis to optimize my capabilities to as normal as possible.

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

Mornings are always hard for me, one because of PD, also because I have always been a night owl. Sleep is a priority. After tending to my daughter and husband, I usually allow myself time to sleep undisturbed (which I have found to be imperative in my overall well being). Not an easy feat I tell you since once the sun rises my circadian rhythm says stay awake. I usually get on average 6 hours, which means no meetings, appointments, phone calls, cool- dark room, face mask and my comfy blanket and I am golden. Family now knows not to disturb me unless necessary until I wake up. Then I take my morning meds, do some stretching exercise, eat a good breakfast and read a daily devotional (alone time with God), and I am ready for my sleep. At night I tend to be most active so before I go to bed (which typically is as everyone is getting up or after everyone leaves the house) while everyone sleeps, I clean, write, cook, prepare lessons and projects, decorate for the seasons, listen to music, read or watch movies. This is when I sing and dance, although my singing sounds more like a croak from an old toad but my cat and I enjoy it. There are many nights where I simply pass out on the couch from pure exhaustion and my husband has to take me to bed physically. But like any good diva I care for my skin by moisturizing my face and body and brushing my hair & teeth when I awake and before bedtime.

Do you have any favorite beauty products?

Can’t live without my lipstick Lancôme reds and pinks – lotion- Cherry Blossom from Bath and Body is my favorite, along with a display of perfumes on my counter- I have a collection for every occasion ranging from new, fun, fruity, and sexy. I am especially drawn to those who have an iconic image or symbolize something for me like Bebe or Carolina Herrera-Good Girl- Love the fragrance and equally enamored of the high hell stiletto.

 
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How would you describe your style in three words?

Flirty, feminine and whimsical classy- I always look for unique things and things that make a statement.

What is something you do for self-care?

Getting bi-monthly massages, pedicures and manicures as often as I can. Sleep is a priority. Spending time being mentally active –Always trying to learn new things.

What makes you laugh?

My family makes me laugh, my new kitty is most adorable and entertains me quite a bit –as he chases his tail or sits at the table like a person. My friends make me laugh. But most often is me laughing at my own antics, faux pas as I attempt to go on with my day to day living with PD.

 
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What or who inspires you right now? 

People who live with disabilities but are not defined by them like Stephen Hawking, artists like Frida Kahlo, other women who are changing the world – my mentor and neurologist Dr. Mya Schiess. (pictured here with me as we travel to a conference for PD together).

 
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What is a product or thing you can’t live without?  

Things I can’t live without are my electronic devices such as my iPad, iPhone, which have allowed me to connect with others on the same journey around the world. Plus, thanks to these devices things like shopping can still be enjoyed. Of course chocolate, & an iced caramel macchiato with extra syrup and caramel. My comfy faux fur and I need to be surrounded by color which inspires me and gives me energy– my best friend Lauri along with my other girlfriends.

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

I love chocolates (dark especially if coated with cocoa), lava cakes, French food and pastries, Mexican and Italian food (I guess most rich foods that have lots of butter and sugar) as I have told my daughter butter and sugar are my best friends. I love watching movies, traveling, reading but not so much lately (mystery novels) – music- I love anything that has a nice beat and rhythm that makes me move and sing out loud. Feeling Good is a tune I listen to often when I write.

You can follow Maria on Facebook or Instagram. You can also read her blogs Parkinson’s Diva and Defeat Parkinson’s, & her wonderful book Parkinson’s Diva: A Women’s Guide to Parkinson’s Disease.

Thank you Maria!

 

 

weekend cocktail- greyhound

Citrus is in season and one of my favorite ways to enjoy grapefruits are in a Greyhound. Simple and delicious. There are also lots of variations if you want to fancy it up but I love it as is, so that you can enjoy the tart, sweet taste of the grapefruit.

1.5 oz. vodka or gin

4 oz. freshly squeezed grapefruit juice

Fill an old fashioned glass with ice, then add the vodka and grapefruit juice. Garnish with twist of lemon or lime. If you salt the rim, it’s a Salty Dog. Add 1/2 oz. of Campari and you have an Italian Greyhound. Enjoy!

 
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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


5 things about parkinson's

I recently saw on youtube Scott Rider interviewing Brian Grant. Brian is a former professional NBA basketball player and the founder of the Brian Grant Foundation. Scott is a former runner and both he and Brian have Parkinson’s. I enjoyed the interview and there were five points that they discussed that I wanted to highlight.

  1. Asking for help-Brian mentioned he has a hard time asking those closest to him for help because in the future he will really need their help, and doesn’t want to overwhelm them now.

    Scott had a really good point, that for the most part people really do want to help. As I thought about it and turned the tables on how I’ve felt when people have needed my help in the past, that it’s true. It feels good to help others so sometimes we shouldn’t deprive someone from providing help and just accept it graciously.

  2. Letting your tremor go- I thought this was funny. They both talked about how the anxiety of holding it together and trying to not show your symptoms can be worse than the symptoms itself. So it feels good to sometimes when you’re by yourself to just let your tremor go!

  3. Lose the vanity- One of the best pieces of advice that Brian received was from Michael J. Fox telling him to lose the vanity. That sometimes when you’re a celebrity, part of your identity is wrapped up in your vanity, but with PD you need to strip that away. Although most of us are not celebrities, it’s still good advice we can take to heart.

  4. Advice to newly diagnosed - You are not alone and it could be much worse.

    I think many of did feel alone when we were first diagnosed because we just didn’t know anything about PD and immediately thought the worst. So keep telling your story because you never know when it can benefit someone and if you are newly diagnosed, find a way to connect with someone who has PD. There are many others going through the same thing as you are.

  5. Asking others what are their stories- Lastly, Scott mentioned that he goes up to people who have visible disabilities and tells them he has PD and asks about their story. I’d have a hard time doing that but it’s a very interesting idea because it could be mutually beneficial to share the different challenges that we all have and that person may not often have the opportunity to tell their story.

Here is a link to the full interview. Enjoy your day! xoxo kai

aloha friday

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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

staying positive w/a chronic illness

If you have a chronic illness, you may spend a lot more time than you’d like trying to stay positive. The daily physical and mental challenges can sometimes leave you burned out. But that’s ok, it happens to all of us. That’s the first thing to recognize is, that it is ok. Sometimes you have to let it go and let yourself have a mini pity party. Let that feeling flow through you.

Then it’s time to reset and move forward. Being positive takes practice and is not a trait that you have to be born with. I don’t mean Pollyanna, everything is good all the time optimism, but truly taking stock and having strategies to practice, so that it becomes the direction you lean towards most of the time. You know the person who, no matter what the topic, finds the negative and wants to dwell on it. It can just become habit and many times they don’t even realize they’re doing it. Think of it as a muscle to work out and with practice it will become easier over time. Here are a few ways to incorporate a positivity practice in your life.

~ Start with what you have. Not what you don’t have. Comparing yourself to others is a quick route to negativity because you will always find someone else who has a better ____(fill in the blank). But the reality is that someone most certainly has it worse, so start with gratitude for what you do have. The little things count and thinking about what you are grateful for on a daily basis keeps it more center stage.

~ Let a bad day be just a bad day. Sometimes when you’re having a tough time, it’s easy to throw everything else negative going on in your life and pile on. Especially when you’re having a bad day and you’re also fatigued. Work through the difficulty at hand and don’t dwell on anything else at that moment.

~ It’s the company you keep. The saying that “misery loves company” can be very true. If you have someone in your life who is an Oscar the Grouch, you may want to rethink how it’s impacting your quality of life. Maybe you can be the catalyst to help them realize their negativity and help them to seek ways to be more positive. Unfortunately, sometimes it may mean spending less time with them and spending more time with those who are better supportive.

~ How you verbalize things matter. How you frame your speech can have a big impact on how you feel about things in your life. So if you came in second place at the pie baking contest the pessimist might say, “I knew I wouldn’t win. I should have practiced more. I wasn’t good enough to win”. The optimist might say, “I had a great time participating. It was my first pie contest and I learned a lot, and am thrilled that I placed second.” Practice saying the glass is half full.

~ Lastly, exercise. It’s been proven over and over again that exercise can not only help you physically but also help mentally to work out stress, relieve tension, and to help you reset. So do your favorite exercise or go outside and take a walk and start each day with an empty cup. How will you fill it?

I’ve love to hear your tips on helping stay positive with a chronic illness. ~kai

aloha friday

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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

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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.  

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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.   

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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.  

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 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.    

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 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”

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.    

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 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

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

famous people with parkinson's

the two most well known people with pd are probably michael j. fox and muhammad ali. however there are a bunch more well known people that you might not know about. many in their day, didn’t let the public know about their illness likely of the stigma it would cast. so it’s great to see more public people talk about their pd openly because they have a wide public reach and can help shed light and resources. hopefully we’ll also hear from more well known woman with pd. it’s not the club we want to be a part of, but hey if we have to, we are certainly in some interesting company. if you know of any others, let us know!

alan alda - actor

neil diamond - singer

billy connolly - comedian

linda ronstadt - singer

brian grant - nba basketball player

janet reno - 1st woman to serve as attorney general

freddie roach - boxing coach

michael richard clifford - astronaut

ben petrick - ml baseball player

maurice white - singer w/earth, wind, & fire

charles m. schultz - creator of snoopy

salvador dali - artist

pierre trudeau - prime minister of canada

sir michael redgrave - actor

pope john paul ll - head of catholic church

roger bannister - neurologist & 1st person to run 4 minute mile

fergus henderson - chef

aloha friday

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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

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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

 
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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.

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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!

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walking barefoot

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marc and i are lucky enough to live about 10 minutes from ala moana beach park and on some early mornings we like to walk down the beach barefoot. it feels incredible to feel the sand between your toes and see the beautiful ocean. it’s also an important exercise for me as it helps with my balance, allows my feet to move freely, strengthen, and stretch. it also helps with my dystonia and muscle cramping. i can feel my toes gripping the ground and i also feel the bottom of my feet which i don’t when i’m wearing shoes.

i read that our feet have 26 bones, 33 joints, and 100 muscles, tendons, and ligament, and that our feet were not meant to be in stiff shoes all day. there is a movement called earthing, which talks about how direct contact with your feet to the earth connects you to the energy of the earth. whether you subscribe to it or if it’s a little too new agey for you, walking barefoot just feels good and feels natural.

in hawaii we take off our shoes when we go indoors so we are used to being barefoot. however if you wear your shoes all day, it may seem odd at first to go without them. so just start with removing your shoes when you’re at home. once you get used to it, you’ll never want to go back! your feet will be thrilled to see the light of day, feel the fresh air, and feel the sensation of everything they are touching. imagine if we had gloves covering our hands all the time, even in the summer and indoors.

if you don’t have the luxury to walk on a beach, when the weather permits you might have a park or a grassy area that you could walk on. or take off your shoes for a short time while your gardening, or just walk to the mailbox barefoot. i’d love to know if find walking barefoot beneficial.

~kai

aloha friday

 
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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.

my magic morning smoothie

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i’ve had this smoothie for breakfast every morning for years. i’ve experimented with different combinations and this ticks the boxes of healthy, delicious, and easy. now it’s going to look like it’s a complicated long list but I’ll explain how to get it streamlined so it comes together very quickly. it’s chock full of healthy ingredients and keeps me full until lunch. i also like that i don’t have to think about it and as a result i’m not tempted to eat other things, that may not be so good. i use a magic bullet so that each person can personalize their smoothie but you can certainly make larger batches in a blender. next to each ingredient I put a note on how to streamline it. you’re not going to believe how much goodness you can pack into breakfast. Enjoy!

Dry Ingredients (i keep all of the dry ingredients in a basket and just pull it out each morning)

protein powder of your choice

1 tablespoon psyllium fiber (helps keep us parkies regular & also keeps you full until lunch)

1 teaspoon cacao nibs

1/4 teaspoon matcha green powder

1 teaspoon hemp seeds

1 tablespoon almond or peanut butter

Frozen Ingredients

handful of berries (i purchase a big bag from costco)

half a banana ( buy several bunches, peel them, break them in half and put them in a ziploc in the freezer)

1 small piece each of ginger & tumeric root (i buy large pieces and slice them into 1/2 inch pieces, throw them in a ziploc in the freezer. you can also read my post about growing them)

kale, chard, or spinach ( the brilliant hack on this is i purchase a large bag of prewashed fresh leaves at costco and i put the bag directly into the freezer. when you put them in the smoothie, they crush easily like potato chips, keep your smoothie cold, and you don’t have to worry about using it up before it spoils!)

put all the ingredients into your blender, fill with cold water and blend. if you’re using fresh and not frozen fruits and greens, add a couple of ice cubes before you blend. so in the morning you just pull out your basket of pantry items, your frozen items, whip it together and you’re ready to go. part of the hassle of a smoothie is always trying to have the fresh fruit and greens on hand so freezing them makes it easy.

~do you have any good smoothie tips? i’d love to hear them!

say hello

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through the various online parkinson’s forums i read and participate in, i’m starting to notice that there are a number people who become more isolated as their disease progresses. just from my personal experience with pd, i’ve had to retire, do much less socializing, and basically much less of most everything. i’m fortunate that i have good support system and live in an area where it’s easy to get out and see people.

but if you’re not as mobile or live in a rural area, it can be difficult. as time passes and you’re pd progresses, your social networks can get smaller. social media can help. you can see and participate as much as you like and keep up with people in your life. however it can’t replace a real time conversation with someone. i deliver meals on wheels each week and in addition to the meal that’s provided, the personal connection can be just as important.

if you know someone who for whatever reason has difficulty getting out, make it one of your new year resolutions to visit or call them once a week or month, or whatever works for you. just call and say hello. tell them about your day, what’s going on in the world, it doesn’t really matter what you talk about. but i can promise you, it will be a bright spot in their day. and you know what, it might end up being a bright spot in yours.

ginger & tumeric - garden notes

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time to harvest the ginger and tumeric. i love growing them because they are so easy to grow in pots and the time window to harvest them is flexible. you can see from the photos below that the leaves are dying and the plants look shabby which is just you want, because that means they are ready to harvest. to plant them you take a knob of either one that looks healthy and cut the little fingers off making sure that each piece has a little bump on it which is where the new sprout will grow from. i put 4 or 5 pieces about 2 inches below the soil in each pot and put in an area that will get good sun. keep well watered and i add an inch of compost to the top of soil each month and that’s it. it grows year round here in hawaii but if you’re in a climate that gets chilly, you’ll want to plant in the spring and they’ll be ready to harvest at the end of the summer. it does take 5 or 6 months before you can harvest but well worth it.

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here are the knobs after i’ve taken them out of the pots and cut off the stems. the ginger seems to always be more prolific and although it doesn’t show up in the photos, it looks spectacular with little pink young shoots at the ends, and when you break a piece in half, the smell is wonderful even with my loss of smell. it has a sweet and spicy smell at the same time.

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then i break them into pieces and scrub them clean. since they are so fresh, the skin is thin so you don’t need to peel them. i like to slice them into little half inch slices and i put them into ziplocs and into the freezer they go. i pull out a few pieces when i need them and sit them on the counter, and they defrost in just a couple of minutes.

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for my morning smoothie they can go directly from the freezer into the magic bullet. they are also delicious chopped and added to curries and stir fries. i also simmer the ginger to make tea. there is lots of information about how both tumeric and ginger and their health benefits and there is even some research being done to see if it can help with parkinson’s. happy gardening!