diary of a woman with parkinson's

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

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?

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...

~ 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.

forget about it

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

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

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

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

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.

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.

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.

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.

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.

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).

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!

5 things about parkinson's

matsumoto’s shave ice

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

staying positive w/a chronic illness

magic island, oahu - courtesy of justin ornellas

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

Living w/Style & Parkinson's: Allison Smith

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

Hi Allison, tell me a little about yourself.

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

 What is your journey with Parkinson’s?

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

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

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

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

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

 What are you enjoying right now?

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

 What is one of your challenges right now?

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

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

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

 Do you have any favorite beauty products? 

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

How would you describe your style in three words?

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

 What is something you enjoy doing for self-care?

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

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

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

the infamous “Crash”

 What or who inspires you right now?

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

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

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

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

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

famous people with parkinson's

sky above clouds iV - georgia o’keefe

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

alan alda - actor

neil diamond - singer

billy connolly - comedian

linda ronstadt - singer

brian grant - nba basketball player

janet reno - 1st woman to serve as attorney general

freddie roach - boxing coach

michael richard clifford - astronaut

ben petrick - ml baseball player

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

charles m. schultz - creator of snoopy

salvador dali - artist

pierre trudeau - prime minister of canada

sir michael redgrave - actor

pope john paul ll - head of catholic church

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

fergus henderson - chef

walking barefoot

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

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

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

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

~kai

say hello

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

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

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

Living w/Style & Parkinson's: Sharon Krischer

Biking with Mr. Twitchy

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

Sharon tell me a little about yourself.

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

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

Enjoying the cold fall weather in Quebec

What is your journey with Parkinson’s? 

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

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

PD women looking good!

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

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

What are you enjoying right now? 

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

 What is one of your challenges right now? 

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

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

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

Do you have any favorite beauty products?  

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

How would you describe your style in three words? 

Casually stylish, contemporary, youthful

 What is something you do for self-care?

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

On one of her travels around the world

With Ninja Warrior, Jimmy Choi

What makes you laugh? 

 My husband and my grandchildren!

 What or who inspires you right now?

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

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

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

Thanks so much Sharon!

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

keeping a positive attitude

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

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

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

little mood boosters

when you have parkinson’s, your mood can go south quickly and out of nowhere. you may have a wearing off period or side effect from your medication, you suddenly get fatigued, or if you’re like me, you can get a little foggy (it sort of feels like fireworks are going off in my brain). when you’re having a challenging day, sometimes just doing something small can pick you up and make you feel a little better. it sort of interrupts the cycle just long enough to get you back on track. so i’ve found little mood boosters that can help.

~ go outside and just look at the sky

~ take a walk

~ listen to an inspirational podcast or audio book (if you need suggestions email me i have a bunch i like)

~ read a few pages of an inspirational or funny book

~ listen to some upbeat music

~ call or text a friend or family member

~ meditate

~ clean or declutter something that can be finished in one sitting

~ organize my to do & want to lists

~ watch a short funny video

~ be a tourist in your own city for the afternoon

~ dance or sing for five minutes

what things do you do that help boost your mood? ~kai

losing your sense of smell & taste

one of the potential symptoms of parkinson’s is losing your sense of smell, which in turn lessens your sense of taste. foods become more bland and not as interesting. my coffee in the morning used to be an incredible experience of smell and taste first thing in the morning and although i still love the experience that comes with coffee and my morning routine, the coffee itself is definitely not as flavorful as it used to be.

as i’ve mentioned in a previous post, it might also be contributing to why my sweet tooth has increased. my taste buds might be seeking more extreme flavors to get satiated. so it can be easy to go overboard with salt or sugar while cooking without knowing it. so here are few things that can help boost the flavor quotient of food.

1. vinegar & lemon juice - both of these can bring an extra depth of flavor to most dishes. you can add a tablespoon of vinegar during cooking or at the end, but use fresh lemon juice at the end of cooking to keep the flavor bright.

2. citrus zest - aside from the juice, the zest with all the oils adds a wonderful intense citrus flavor. zest the fruit first and then juice it.

3. spices - you can go in so many different directions with just the use of spices. spice blends are also a great. i have been loving sumac lately.

4. herbs - fresh or dried they can add tremendous flavor to foods. if you can have a few pots of them growing, even better. something as simple as a large handful of chopped mixed herbs in an omelet can elevate the dish to something special.

5. condiments - mustards, hot sauces, ko chu jang, harissa, & miso are all great ways to add an umami bomb of flavor.

6. bitter vegetables - radicchio, endive, broccoli rabe, and mustard greens. adding these to salads, soups, stir fries can add a pop of interesting flavor.

7. pomegranate molasses - this used to be an exotic ingredient but now can be found in many grocery stores or online. it’s thick and has a sweet and sour flavor and is delicious. add a spoonful to your vinaigrette, drizzle it over roasted vegetables, or brush it over cooked meats while they are resting.

   many of these spices and condiments will last for a long time, so i have a ton of them in my fridge. that way i can cook simply but change the direction with a different spice. i can pick up a package of chicken thighs and pan fry them with a mustard sauce, or smear them with a ko chu jang sauce and bake them, or simmer them in a curry sauce.

   have you started losing your taste and smell and if so what are some other ways that you add flavor to your foods?

   ~kai

can illness bring you joy?

having parkinson’s can be difficult. there is not a day that goes by that it doesn’t stay top of mind. you have an invisible chain to your clock because you need to see if it’s time to take your medication. some days it’s difficult to get the energy to do the tasks for the day and to be your own best cheerleader.

but in spite of all the challenges, can illness bring joy to our lives? i say yes. it can bring into focus at laser speed the things and people that are most important in our lives. it can provide gratitude because we understand loss. it can teach us greater empathy to others when they are having a difficult day. it can bring us joy by learning to live and enjoy the present moment.

so when i’m having a down moment, i try to remember not only what parkinson’s has taken away, but what it has given me.

online parkinson's community

i’m very happy with my doctors. hawaii has very few neurologists who are movement disorder specialists, and of those few a couple of them don’t take my insurance or are not taking any new patients, so i feel fortunate to have one. she is wonderful when i visit but i know she is also very busy, so if i need to email or call between visits, the communication is a little on the light side.

it also seems like those of us with parkinson’s are constantly adjusting our medications as our symptoms change, so when i started having some off periods and some anxiety, i thought i’d reach out to an open forum on the parkinson’s foundation website to see what sort of feedback i could get.

wow i had no idea the collective power and wisdom i would find on them. i posted my question and got some very thoughtful and varied responses. i also posted on their ask a pharmacist forum who is moderated by Mark Comes who is a pharmacist who also has pd and received some great feedback also.

of course it doesn’t replace the advice i get from my doctors, but sometimes the best advice comes from others in your same shoes and it’s wonderful to know that our pd community is ready and waiting to help. and by the way, i was also able to help by sharing my experiences with a others posting questions. if you know of other helpful forums please post them in the comments.