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!

 

 

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!

Living w/Style & Parkinson's: Sharon Krischer

Biking with Mr. Twitchy

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

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

Enjoying the cold fall weather in Quebec

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!

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

On one of her travels around the world

 
With Ninja Warrior, Jimmy Choi

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.