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


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