aloha friday

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I started a new kickboxing class this week. It was posted on our local PD association email, so I thought it was a class for PWP. I showed up and I was the only one there who had PD. At first it was a little nerve wracking because I wasn’t sure if I’d be able to keep up with everyone, but I ended up having a terrific time. If you live in Honolulu and would like to find out more, email me directly and I’d be happy to share more details.

Aside from trying to stay cool, here are few things that I’ve been interested in this week. Have a wonderful weekend.

What I’m watching - I want to hang out with Monty Don in his garden. His soothing voice and obvious passion for gardening makes me love every show he is in. I’m currently watching Gardeners World. All the Queen’s Horses is a an interesting documentary about a comptroller in a small town in Illinois and how she embezzled $53 million in public funds. TCM is highlighting movies made in 1939 called “Hollywood’s Golden Year” for movies. There are some great classics that I’ll be watching including Love Affair and Wuthering Heights.

What I’m reading - A Trick of the Light by Louise Penny. This is the 7th in the Armand Gamache mysteries and I’m just loving this series. The Word is Murder by Anthony Horowitz. Super interesting the way he interspurses his real life into the novel. The House of Morgan: An American Banking Dynasty and the Rise of Modern Finance by Ron Chernow. A highly researched and written book about the family banking dynasty. Styled: Secrets for Arranging Rooms, from Tabletops to Bookshelves by Emily Henderson is a beautiful book with great tips.

What I’m listening to - Joao Gilberto the pioneer musician of Bossa Nova just passed. I’ll be making a weekend cocktail and listening to this classic album Getz/Gilberto. Gretchen Rubin’s latest book is Outer Order Inner Calm. I enjoy all her books and this one is about decluttering and organizing your home.

Last thought - Chronic illness can take, but one of the things it has given me is the awareness to marvel in the ordinary.

xoxo~ kai

summer lovin

Summer is here, so let us Parkies find more ways to enjoy it.

Exercise outdoors- If you have a hard time finding the motivation to exercise or the weather in your area can be a deterrent to get outside in the winter, let this be the season for you. Choose your favorites. Walking, hiking, gardening, biking, swimming, an outdoor Tai Chi or yoga in the park class. Mix it up. Walk a different park or neighborhood each week. Don’t have a garden? Check with your local garden extension or public gardens and volunteer. Make it a date. Find someone to do it with and when you’re done, have a cup of coffee at a new cafe.

Enjoy the summer bounty - This is the perfect season to increase your fruit and veg. Pick a couple of your favorites and look for a few new ways to enjoy them all summer long. Right now there are beautiful local mangoes, so I’m trying them in all sorts of ways. I made this summer cake and replaced the berries with mango, coconut tapioca pudding, and mango salsa that I’ll top fish and tacos. Visit your local farmers market and get inspired.

Eat outdoors - It doesn’t have to be elaborate. Enjoy coffee or a cocktail. Have a picnic. No cooking necessary. Take a crusty loaf of bread, slices of salami & cheese, olives, fruit, and few store bought cookies and enjoy the sunset. It really doesn’t matter because everything you eat outdoors tastes better!

Try a new activity - Summer time may bring lots of extra activities to your city. Look for festivals, museums with special exhibits or free days, watch a movie or play in the park. Instead of reading on your couch, find a big tree to sit under and enjoy your summer read. In our neighborhood there is an old cemetery. A local theater group put on a play in the cemetery portraying interesting people buried there and how they contributed to the community. It was fascinating.

Stay cool - Dress in natural fabrics like cotton, linen, and silk. Looser cuts and dresses or skirts feel cooler than thick jeans. Drink lots of water throughout the day. Infuse a big pitcher of water with a few slices of lemon or lime, mint, or cucumber to make it more interesting. Wear sunscreen every day. Cerave and Elta MD are two of my favorites for my face and Sun Bum for my body. Wear hats. Solumbra and Coolibar are fantastic. I wear this wide brim hat for gardening and this one for walking. I can throw them both in the washer and they travel well.

Happy summer!

aloha friday

Today is the summer solstice for those in the northern hemisphere and winter solstice for the southern hemisphere. It’s officially summer and this summer I’m looking forward to swimming and hiking more & having a few easy picnics. Lofty goals I know but being outside really helps me feel better so I’m always looking for more ways to do that.

~ Speaking of summer, Gretchen Rubin talks about designing your summer in this episode of Happier with Gretchen Rubin. It talks about not just letting your summer pass without planning some enjoyable things to mark the time.

~ I’ve been watching the comedy Schitt’s Creek on Netflix. It stars the very funny Eugene Levy & Catherine O’Hara and if you liked Arrested Development, you’ll like this also. It takes a few episodes before it really starts to kick in but they are only 20+ minute episodes.

~ Two excellent memoirs I just finished are Save Me the Plums by Ruth Reichl. Ruth talks about her time working at Gourmet Magazine and it’s abrupt shutdown that came as a complete surprise. Ruth is a wonderful food writer and a few of my other favorites that she’s written are Garlic & Sapphires and Tender at the Bone. The other book is Becoming by Michelle Obama. No matter your political point of view, you can see what a strong & caring family she came from and the challenges and joys being first lady has provided her. Both memoirs are fantastic in audio form.

~ I regularly make red wine vinegar but I’m trying my first attempt at apple cider vinegar. We’ll see how it goes. In the meantime I’m loving this simple fresh salsa with chips, on quesadillas, and taco tuesdays. If you’re losing your smell and taste, give it a try. The acid, spicy, salty hits my taste buds! I’m also going to give this strawberry summer cake a go this weekend. It looks simple and delicious.

Wishing you a beautiful summer. xoxo Kai

(photo above from House & Garden)

summer PD book read

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If you’re looking for a summer read, how about a book about Parkinson’s. We share many similarities from the disease itself but all have different paths and journeys, and it’s so touching to read others experiences. I laughed, cried, was inspired and learned a lot of helpful information, and I hope you will too.

Lucky Man: A Memoir, Always Looking Up: The Adventures of an Incurable Optimist, A Funny Thing Happened on the Way to the Future - Michael J. Fox - We all know MJF and all the incredible work he has done for the PD community. All three of these books are great to listen to as audiobooks as he narrates them with his familiar sincerity and humor and how he still sees his as a charmed life.

Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined - Tim Hague - Tim shares the story of his life, from his challenging childhood, to life with PD and how his time being on the first season of the show The Amazing Race Canada with his son, has dramatically changed his life.

Parkinson’s Diva - Maria De Leon, MD - Maria has been a caregiver, a Neurologist, and also has PD, so she has a very unique perspective. Her book is a terrific mix of medical information wrapped up in fun and personal stories. Maria is also writing a new book and I can’t wait for it to come out and if you missed it, here is a link to the interview I did with her.

Every Victory Counts - Davis Phinney Foundation - This is an excellent manual with lots of good information for both PWP and caregivers. You can download the ebook for free, or your can also receive a printed copy until they run out.

Here are the books on my to be read list. Have you read any of these or do you have any good books about Parkinson’s that you can share?

aloha friday

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Tomorrow we’ll celebrate my mom’s 80th birthday. She has been and continues to be such an inspiration to me. Happy Birthday Mom! Today it’s gardening, exercising, and reading. Have a wonderful weekend.

~ Yay, the Downton Abbey movie will be released in September. Here is a trailer and guess who’s coming to visit?

~ Here is a shocking way to see how much added sugar you’re consuming.

~ Bill Gates does his yearly summer book read recommendations and this year looks like some really interesting picks.

~ Small Fry by Lisa Brennan-Jobs - I enjoyed this memoir from the oldest daughter of Steve Jobs. The surprising humble life she lived growing up and the difficult relationship with her world famous father is so interesting to read.

~ This One-Pan Bruschetta Spaghetti from the NYT Cooking site looks intriguing. I’ve always wanted to try a one pan pasta and with summer tomatoes soon at their best, this is the perfect season.

~ Actress Minnie Driver has a lovely new line of furnishings from One Kings Lane. I love to soft British prints.

~ The Japanese secret to living a longer life. What is your Ikigai?

“If you believe it will work out, you’ll see opportunities. If you believe it won’t, you will see obstacles.” ~Wayne Dyer

(photo above from Big Red Sun)

house cleaning plan

What is your method of cleaning your home? Do you do it all in a day, or do you break it up into smaller tasks? I’ve had many iterations over the years and a lot of it depended on the stage of my life. Now having PD and the fatigue that can come with it, breaking it up into individual segments seems to work the best for me. I created a checklist to help me keep track and you can download a PDF of it here or an Excel version here so you can make changes according to your needs.

The overall plan is each day I choose one, but can add as many more segments as I like around my time and energy. Basically there are the things I do every day which are make my bed, wash dishes, and do a 5 minute straighten up before bed. Then each day I do one or more of the Weekly List. Then once a month I choose one item on the Monthly List. The final list is the Major Cleanout that aren’t absolutely necessary but if you’re up to it, choose one a month.

I find that this system has enough structure so that things get cleaned regularly but is also flexible, and if you miss a task here or there, it doesn’t matter because you will just pick it up the following week.

Although house cleaning is not my favorite thing in the world to do, it is something that I have to do. So I look at it like a project and put together the best system for me and it becomes enjoyable. Another tip is if you have a two-story or larger home, keep several caddies of cleaning supplies in different areas of your home, so their easy to access. PDF Cleaning List Excel Cleaning List

Do you have any cleaning tips that you can share?

aloha friday

It’s Memorial Day Weekend in the US which honors servicemen & women who have lost their lives during active duty. For many it is also the kickoff to the spring/summer season. I remember once I was at the JFK airport in New York going down to Miami where my son Bronson was living and it was the Friday before Memorial Day. The plane was full of 20 somethings going to party in Miami for the long weekend. One of them had curlers in her hair, her pajamas on, and a full size pillow. The flight was abuzz the whole time with talking, laughing, and anticipation. Ah the energy of youth. It brings a smile to my face every time I think about it. Hope you have a wonderful weekend.

~ The Feather Thief by Kirk Wallace Johnson - A fascinating book about a theft of rare bird specimens at a British museum, but is so much more than just the crime. I didn’t know what to expect from the book but who knew that the world of Victorian fly fishing lures could be so interesting.

~ The Devil in the White City by Erik Larson - This historical non-fiction books reads like a novel and traces the simultaneous paths of the 1893 Chicago World’s Fair and the killer H. H. Holmes. The author does great research into the details and really crafts the story well.

~ Even though I bring reusable bags to the grocery store, I still have a ton of plastic produce bags, so I’m going to give these reusable produce bags a try. I also reuse the plastic bags by giving them a rinse and then drying them by putting a couple of wooden spoons into a tall glass and putting the wet bag over it like a tent to dry.

~ Some days it’s not as easy to type on the computer so any little bit helps. Here is a super helpful article that shows keyboard shorts. It can be difficult to remember so pick the top 10 that you think you will use the most and put them on a post it note on your computer screen.

~ It’s starting to warm up around here and I’ve been looking for a loose, versatile linen top. I’ve narrowed down my two choices to this pale blue one from JCrew or this lavender option from Everlane.

~ Ina Garten’s Tuscan Tomato & Bread Salad is a cross between a Caprese & Panzanella and is on my list for my next bbq, along with Love & Lemons Broccoli Salad.

~ I really enjoy listening to the When Life Gives You Parkinson’s podcast. Larry Gifford shares his journey since being diagnosed in 2017 and it’s really touching and informational. It’s also great for family members and caregivers to help them understand and navigate our complicated world of PD.



7 things on saturday

This weekend it’s lunch at Mom’s house and a movie with Marc. We’ll be watching The Avengers, not my favorite movie but spending time together makes it enjoyable anyway. Did I mention it’s a three hour movie :)

~ Take a look at the newly opened TWA Hotel at the JFK Airport. Such a cool retro remodel.

~ Renee Zellweger does an amazing portrayal of Judy Garland in the trailer for “Judy”.

~ Bookstores: How to Read More Books in the Age of Golden Content - Fun documentary about reading more and bookstores. It’s free and only about 30 minutes long.

~ Inheritance - Dani Shapiro - This is her latest memoir about her finding out that her father is not her biological father. The book opens with that and goes into how that changed her idea of who she was and answered many of the questions she had growing up feeling different. I’d recommend the audiobook as Dani has a beautiful voice and makes the stories feel so much more personal.

~ It’s been a little over the halfway mark on my month of no shopping for anything other than food and basic toiletries. Everytime I think of something I want to purchase, I put it on my wish list. It’s been going really well. I caught myself putting something in my Amazon shopping cart but then deleted it. I was also at the drugstore and picked up a home hair highlighting kit and headed for the checkout line, but thought about it and put it back. It’s feeling really good and I’ve gone back several times to my wish list and deleted things I thought I wanted but now see that I really don’t need it. Leo Babauta has an interesting article about why we buy things.

~ Pour Heavy Cream on Fruit. Such a simple idea yet so delicious.

~ Easy snack or lunch-Hummus Quesadilla-Smear a whole wheat tortilla with your favorite hummus (mine is red pepper hummus) and fold in half. Brown in a saute pan with a tiny bit of olive oil until brown on both sides. Serve w/ just hot sauce or avocado & cilantro. The hummus turns warm and creamy like melted cheese and is much healthier.

Have a wonderful weekend. ~xo Kai



diary of a woman with parkinson's

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I woke up this morning feeling good. I exercised pretty hard yesterday and that usually helps me sleep better. Had coffee with a spoonful of Laird Superfood Coconut Creamer. Trying to replace my dairy milk and so far I like this the best. Did my TRP (think, read, plan) time with my coffee and then some light gardening to get outside and move around a little. I’m trying intermittent fasting a couple of days a week so I waited until 10am to make my smoothie.

Computer time. We are visiting my son Bronson this summer in Brazil and there is still lots to plan out. The three phases of a trip are so much fun. First there’s the planning of the trip, the actual trip, and then talking about the trip when it’s done. I’m having a challenge focusing on the computer for long lengths of time. When I was working, for long or complicated projects I would use the Pomodoro technique which I now find very helpful at home with PD.

There is a terrific public swimming pool in the neighborhood so I drove down there and did this lower body routine that I watched on Dominique Sachse’s YouTube channel. For lunch I had canned sardines, brown rice, and moms homemade kim chi. Healthy and delicious, but the fridge is a little bare so I went to the grocery store and dropped off books at the library. One of the books I returned was called Wild Food Plants of Hawaii. I went on a foraging class last month and it’s so interesting to learn about the different plants all around us that are edible.

Dinner was very simple, sauteed thinly sliced pork chops with a greek salad. For dessert I usually have three prunes. Maybe not the best time to talk about it but since PWP many times need help staying regular, my formula is I put psyllium husk in my morning smoothie, take a probiotic, and eat 3 prunes every day, and for me it works great.

A little TV and then finished reading Elizabeth is Missing. It’s a novel about a woman named Maud, whose memory is fading, but thinks her best friend Elizabeth is missing and no one will acknowledge it. It’s suspenseful and I can’t wait to read how it ends. I usually fall asleep listening to a podcast either about books or classic films. My favorites right now are Currently Reading and You Must Remember This. I’m thankful for another day and hope yours went well. Have a good night.

going with the flow

“A flower does not think of competing with the flower next to it. It just blooms.” -Zen Shin

“A flower does not think of competing with the flower next to it. It just blooms.” -Zen Shin

I was watching a video recently about a very intensive exercise program done in a swimming pool. The owners are extreme athletes and they have a program that really puts people to the test. During the interview, the trainer says that many times people who are the most fit and strongest are the ones that struggle the most in the beginning.

They struggle because they think pushing themselves the hardest and using their strength and power is the way to get through the exercise. What they learn is that the water forces you to move on its on time and in its own way, so you literally have to go with the flow. You have to almost surrender and work with the water, and when you do, it gets easier.

That’s what happens to people with Parkinson’s, many times a day. You can feel fine one minute and terrible the next. You could have done something easily yesterday and today it seems impossible. It can be frustrating and feel defeating.

So when those moments happen, take a deep breath, and don’t fight it. Go with the flow. Move with the water, not against it and eventually you’ll be back on your path.

aloha friday

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This weekend we are going to a few garage sales. From time to time I love to go to garage sales and see what treasures I can find.I I’m looking for a shelf for my garden to put next to my potting table and a lamp for my guest bedroom. I’m also looking forward to taking a walk or swim outside and then Sunday lunch with my sister and mom.

~ Last night in honor of World Parkinson’s Day, Michael J. Fox and his wife Tracy Pollan were on The Tonight Show. It’s a cute segment and Tracy also talks about her new cookbook Mostly Plants.

~ For a variety of reasons, some of us may have mobility issues and need to make changes to our home to accommodate them. Here is a beautiful kitchen remodel helping make it more wheelchair accessible.

~ I’m enjoying reading The Secret Mother which is a suspense thriller by Shalini Boland.

~ For cooking this week I will be making this No Bake Chocolate Tart that looks healthy and delicious with a nut and coconut crust. My favorite lunch this week was a sandwich I made. On two slices of your favorite bread, spread a layer of mayo. Then add a quarter teaspoon of miso and spread it over the mayo on one slice of bread. Layer with lettuce, tomato, avocado, a thin slice of feta cheese, and a hard boiled egg sliced in half. The tiny bit of miso brought a wonderful depth to the mayo.

 
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Have a lovely weekend.


aloha friday

 
lovely tatsoi bunches in the garden

lovely tatsoi bunches in the garden

 

Hello my favorite ladies, hope you had a good week. This weekend is the annual Hawaii Parkinson’s Symposium that I’m looking forward to attending. Usually lots of good information and speakers. Last night we enjoyed dinner with friends at Nico’s Upstairs which is on the waterfront at pier 38. The sun was setting over the harbor, the food was delicious, and the time spent with friends the best part.

~ Looking forward to seeing a new documentary called “Shake With Me” by Zack Grant. This doc is about Zack’s mother, artist Debra Magid and how having PD impacts her life and art.

~ If you’re a true crime podcast fan like I am, here is Lifehacker’s “best of” list.

~ Just finished reading the classic book “The Picture of Dorian Gray” by Oscar Wilde. It’s a free e-book on Project Gutenberg along with many other classics. Starting to read The Guernsey Literary and Potato Peel Pie Society by Mary Ann Shaffer.

~ I made this delicious, quick, and healthy Gado Gado recipe (swapped in tofu for the protein) this week. Also had Baba Ganoush (forget the salad spinner instruction, it’s a mess) which was fantastic on crusty bread, and made a batch of vinaigrette for the week with 2 tbsp vinegar, 1 tsp miso, 1 tsp honey, & 6 tbsp olive oil. Shake it up in a jar and it’s delish.

“Almost everything will work again if you unplug it for a few minutes, including you.” -Anne Lamott

Enjoy your weekend. xoxo Kai

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

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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

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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?

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!

 

 

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

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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

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!