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



just begin again

Eight years ago when I was diagnosed, I went to a support group meeting. It was all new to me and I didn’t know much about Parkinson’s. Marc and I drove down on a Saturday morning and sat down with the group. I didn’t say much, just observed, and at the end of the meeting I walked to the car and burst into tears.

It was overwhelming. It was too much too fast. I looked around the room and saw others who had advanced stages of Parkinson’s and I couldn’t process it. Here I was, young and physically fit, and in my mind I fast forwarded myself to think about the worst case scenario and it was frightening. I never went back.

That was eight years ago and today I went back. The people were wonderful and I’ve had enough time to put things into perspective, and am very glad that I went. Sometimes when you try something and it doesn’t work, regroup and just begin again. Have a wonderful weekend.

~xoxo Kai

30 day challenge-no shopping

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Starting today for the month of May, I’m going to try and not purchase anything except necessary things like food and toiletries. Not that this is some incredible feat of restraint, but I noticed that lately I have been purchasing more little things online than I really need. Amazon and other sites have it so easy to buy things that it just sort of crept up on me.

Anything I want to purchase, I’ll put on a wish list. I think it will be a fun exercise at the end of the month to see what’s on the list and hopefully try to be more mindful about little purchases in the future.

I swear I started this first thing this morning and no more than an hour later I was reading a blog post and caught myself looking at candles online! OMG. I’m back on track and I’ll check in next week to give an update.

If you want to do this with me, either post a comment or email me and we can help keep each other motivated.

spring '19 garden notes

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The garden blogs I read are just bursting with enthusiasm. So many different types of beautiful gardens all around the world and for those experiencing spring, you can hear the excitement in their posts. Hawaii has similar weather all year long, but if you pay attention, you can see the different seasons and changes in the landscape. The mango and avocado trees all around town are exploding with flowers and soon they’ll be heavy with lots of fruit.

A couple of weeks ago I planted two Thompson seedless grapevines. It’s pretty experimental as grapes usually like more chill but fingers crossed. The limes and myer lemons are abundant and getting squeezed on just about everything we eat and drink around here, and the papayas are in season. Tatsoi is a mild green that’s been growing super well this year because of the colder than usual winter and harvesting them is like picking a giant bouquet of greens. The surinam cherry has started to fruit. They look like tiny red pumpkins and I pick a small handful every couple of days, eat a few for their high vitamin C content and then throw the rest into the freezer until I have enough to make a small batch of jam. It’s a tart jam, almost like cranberries which is wonderful with chicken or pork.

My garden is small and it’s very hilly but I’ve got every square inch planted with something and it’s fun to experiment with different plantings and see what works. The poha berries (also called ground cherries) never do well but I keep planting them for the couple of handfuls I get each year. It made a delicious salsa spooned over grilled fish.

The eggplants and tomatoes were just transplanted into the raised beds, along with perilla and the ever present kale. I also started a few plants from pineapple and a pomegranate fruit that I bought at the grocery store and it will be interesting to see if they actually bear fruit. Whether you have a pot on a window sill or an acre to farm, happy spring gardening.

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.

getting dressed with parkinson's

Getting dressed each morning with Parkinson’s can be a challenge. You may be stiff from the lack of medication overnight, you didn’t sleep well, or you have tremors and/or dystonia. Gosh, all of that sounds exhausting and makes me want to go back to bed. Have you ever had that experience of running to the store in your schleppiest look, praying you don’t run into someone you know. It can be tempting if we don’t have the energy or plan to spend the day at home, not get dressed because hey who is going to see me. Me is going to see me, that’s who.

So it’s important that we get dressed every day, even if we have no place to go. Feeling put together helps us be more confident and prepared for the day ahead. So here are a few tips for getting ready in the morning, even it’s only for greeting the mailman.

Clothing:

Lay out your clothes for the next day. That may include your exercise outfit and your outfit for the day. If your stiff and foggy in the mornings, it will prevent you from having to lift, bend, and choose all the items. If you need more motivation to exercise in the morning, you can even sleep in your exercise outfit. If buttons are challenging, look for tops or dresses that you can pull over your head or that have snap buttons in front. Shopstyle has many choices and this cute cotton seersucker dress from Etsy looks perfect for spring. This denim skirt from Uniqlo is stylish and affordable with an elastic waistband.

Makeup:

Putting on makeup might be difficult first thing in the morning so you might take your meds, get dressed and wait a bit until it kicks in before you do your makeup. Combination products like IT’s CC cream which is a moisturizer, sunscreen, foundation, and concealer all in one can be easier than applying them separately. Cream blushes and eyeshadows can be applied with your fingers which may be easier than brushes to apply. Revlon colorstay creme eyeshadow is long wearing and comes in many colors. Lip stick, gloss, or tinted balms with translucent color is easier to apply than dense pigments with opaque colors because they are more forgiving and don’t need as precise edge lines.

Jewelry:

Fiddling with tiny jewelry clasps can be difficult, so adding magnetic clasps can be a big help. You can use them on necklaces and bracelets. Also wearing long necklaces that can go over your head can help avoid clasps all together. In place of a necklace you can also wear a scarf that can add that little pop of color and finish an outfit instead. Here is an interesting video from Nordstrom that shows 16 ways to tie a scarf.

Handbags:

I’ve found purses and bags that have wide openings are best for me. Also having a zipper or clasp at the top is easier to access than one with a flap over top. Having several sections and compartments make it easier to find things and save time fumbling around for everything. I feel the most stressed when I’m paying for something at a store with a line of people, fishing around for my wallet and credit card, so having items organized and easy to grab is a must. A cross body bag is great because you have both hands free. I purchased this bag about six months ago and have been super happy with it.

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.

5 tips for exercising with parkinson's

We hear it all the time. If you have Parkinson’s, exercise, exercise, exercise. It can’t be said enough, because of the importance it plays in our quality of life. There is lot of information on which exercises are better for PD than others, but I think most agree the best one is the one you will keep doing. So here are a few tips to get started. Of course check with your doctor to help find what’s healthiest for you.

  1. First figure out your personality style. Will you be able to motivate yourself on a regular basis to do the activity or would it be helpful to partner with someone for added accountability? Do you want a structured class with set hours every week or do you want something more flexible where you can go at different times? Some people prepay for their classes so that they feel like they have to show up or lose their money. Others may go to a center where there are classes all day long and they can attend on a more flexible schedule. Do you like exercising with others or do you like the solitude of working out on your own? Thinking about the structure that would motivate you the best is important to help you stick with it.

  2. Start slow. The biggest reason I see people stopping an exercise program is that they overdo it in the beginning and end up quitting. One of the keys of staying with exercise is to make it a consistent part of your routine, and in the beginning, this may be more important than the exercise itself. So let’s say you’re going to start walking more regularly. Don’t start by planning for 3 days a week of long exhaustive hikes. Start with a short 10 minute walk from your house each day. It will start to become just a part of your day and from there you can make your walks longer, change the days and venue but you won’t have that beginners burnout.

  3. Make it easy. If you joined that great gym but it’s 45 minutes from your house or work, are you really going to go on a regular basis? That gym may have all the latest and greatest equipment, but if you aren’t using it then it ain’t that great. There may be a class easier to get to that might be more limited in what they offer, but if you’re using it more, then that’s the better choice.

  4. It doesn’t need to cost much. I know that for many people, the cost of joining classes, gyms, trainers, etc. can be out of their budget, but there are many alternatives to look into. There are many quality online classes that you can do in the privacy of your home for free. Yoga with Adriene is a fantastic online yoga channel. She posts full length classes every week and her archive of classes is the best. Fitness Blender has a variety of workouts that you can tailor by type, difficulty, time, and then save the classes you like to go back to. It has low impact, HIIT, weights, cardio, and much more.

    If you have cable TV and access to your PBS station or similar public broadcasting station, most have several exercise class series. Mine has Classical Stretch that I record each week on my DVR and now have 50 classes that are a treasure trove for me to use.

    Many community centers have inexpensive classes of all types. At a local community college here, there are several adult education programs that usually include an exercise class.

    Look for a YMCA or YWCA in your area. They are many times less expensive than a traditional gym and many have exercise classes specifically tailored to those with PD.

    Public swimming pools. We have a few local city pools that have hours specifically for lap swimming and other times free swim.

    I have a pair of light dumbbells that I can do a variety of exercises with, and if you look on Craigslist, you can find them very inexpensively.

    Then of course there is walking which is the cheapest. You can not only walk around your neighborhood but I like to choose another neighborhood. It’s fun to see other homes and shops. Walk in a park, on the beach, on a mountain trail, even in a shopping mall. The change of venue can be endlessly interesting.

  5. Just start. It doesn’t need to be perfect and you don’t need to beat yourself up because you can’t do something perfectly. No matter what, you always feel better that you did it!

    Do you have any good tips for exercising with PD?

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.


spring '19 beauty edit

As the weather starts to get warmer I like to tweak my makeup and skincare a little. It will start to get very warm here in Hawaii so all of the products that I use must be able to stay put and look natural and not overdone. I’ve been watching these makeup tutorials on the Vogue YouTube channel, and granted most of them are super models who are half my age and are gorgeous without a stitch of makeup. But what I like about them is that I can see the current ways that makeup is being used and try to learn a thing or two that fit into my lifestyle.

Cetaphil Daily Hydrating Lotion This is a surprising moisturizer that I love during the warmer months. It’s for dry skin but the texture is extremely light and absorbs quickly. It doesn’t feel gloppy and is a good base for my sunscreen. There is also a version with sunscreen but I like to keep it separate.

Mario Badescu Facial Spray w/Aloe, Herbs, & Rosewater A spritz of this when I’m finished applying my makeup and a few times during the day feels cool and refreshing and in the heat of the summer I keep it in the fridge and it feels fantastic not only on my face but my arms also.

Revlon Ultra HD Matte Lipcolor I love the creamy formula and colors of this lipstick. The applicator is at an angle so it’s easy to apply and lasts a long time while staying put. If you wear nude lip colors all the time and want to try a little more color, these are great because they are matte and so a brighter color is a little more subtle than if you used a glossy finish.

Matrixyl Synthe 6 Serum & Coenzyme Q10 Serum by Timeless Skin Care are both wonderful serums that instantly absorb into your skin. I use a few drops of the Matrixyl in the evening and the Coenzyme in the morning before my moisturizer.

Do you have any spring favorite skincare or makeup that you use?

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

if you have parkinson's, you...

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~ you can still dream, make big plans, & do them.

~ you are more than the collection of PD symptoms that others see.

~ you are still required to push yourself to grow, to learn something new.

~ you are allowed to feel sorry for yourself when you’re having a hard day. But only for that day. Wake up the next day with an empty cup ready to be filled, and with gratitude.

~ you are not alone.

~ you are still fabulous.

~ you are still beautiful and desirable.

~ you can try, and fail, & that’s ok, because sometimes that’s the only way we know how far we can go.

~ you are enough.

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?

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