MERRY CHRISTMAS AND A BLESSED 2017

From my family to yours

Merry Christmas and a very happy, blessed 2017

What's Your Legacy?

   The curse is broken!!! I am sure if you know where I am from, you have already guessed what I am talking about.  Yup, the CUBS WINNING THE WORLD SERIES!!! After over a century of dry spell, the Cubs was able to break the 108-years curse by clinching the best title in the baseball history.    I have to say the play-off games were a nail-biter and the World Series game almost gave me a heart attack.  It was a night to remember and my 2 sons who were at Wrigley Field bars watching the game described the moment the Cubs won as euphoric, unbelievable and just unforgettable.  The Cubs legacy imprinted in our hearts will be treasured forever.

   That brings me to my next question.........what kind of legacy do I want to leave behind?  Can I leave a legacy worth living for with a disease that consumes me on a daily basis?

   Prior to my diagnosis, I have always lived with the motto: to treat others as how you want to be treated and live each day like your last.  It was simple and uncomplicated.  I taught my 3 children to be kind, respecting others always, loving and compassionate.  However, Parkinson's disease encroached onto my life and now, I have to rethink how I need to change my legacy.

   Life can be cruel and until we experienced it, courage to live each day is never a question that crosses our minds.  However, as death rate is guaranteed at 100% so is life's curveballs and battles.  How we face these challenges is crucial to the people around us especially our children.  My children see my struggles every day and along with it, how I am fighting this disease.  My children consistently tell me how courageous I am and how proud they are of the way I am handling my challenges/struggles.  Oh, they have seen me in my moments of weaknesses which is totally fine as they need to see the human side of me too.  But each time I am weak, the rise in my strength and courage return with full force as succumbing to an illness will never be an option for me.  I want my children to ride high during their waves of success, joy and happiness, but when their waves crash into the deep abyss to not give up but get back up to ride high on those waves again.  Living life with courage is a choice and a must in order to survive this imperfect world.  Just like the Cubs leaving a legacy one cannot forget, I hope I can leave my children a legacy one cannot survive without.......COURAGE.

 

In The Eye of an Unexpected Storm

   I remember when I was a teenager, my parents and grandparents would always advise me to work hard and save lots in my youth so that I can enjoy life when I turn 60.  They would tell me to hold off "enjoying life" and once I am in my 60s, I will have the financial means and time to really enjoy life.  Boy, am I glad I did not heed their advice!  I remember so vividly how I silently disagreed with them for I was thinking what if something bad happens to me in my 60s and I cannot enjoy life the way I want to?  What if life robs me of the chance to fully experience life as I seem fit?  Maybe I had a premonition that something bad was going to happen to me late in my life so I disregarded the advice of the grown-ups.  I lived my youthful days to the fullest, enjoying life as I grew older, choosing to live for the moment and enjoyed life with no regrets.  I am so glad I did not listen because at age 50, my unexpected storm came in the form of Parkinson's disease.

   This is why I truly believe every person has to live life in the present, live today like it is your last and to seize each moment of every day.  Of course I am not asking anyone to be irresponsible and to spend unwisely but to enjoy life to the fullest with boundaries and wisdom.  There will be an unexpected storm in all of our lifetime sooner or later which can change the whole trajectory of our future.  So, why wait till retirement age to enjoy your spouse, children, family and the things you want to do in life?  That way when you are in the eye of your storm, you can rest happy that you did not squander the best days of your life and you have lived your life to the fullest.

   But, what do you do when you are in the eye of an unexpected storm?   Often, people respond to bad news with "why me or what did I do to deserve this?"   Just as the death rate for human beings hover at 100% for we will all die someday so is troubles in our lives.  Troubles and bad news are inevitable so we might as well figure out how we can grab a board and start paddling in the midst of any storm.  When we are confronted by bad news or troubles, there are only 2 choices you can make: 1) Give up and sink into the abyss of hopelessness like the Titanic. 2) Start swimming, grab a board and start paddling till you find safe ground.  We may initially be shocked into a comatose state where we cannot function, sink into depression or denial, overcome with feeling of hopelessness or anger.... But as long as we don't reside permanently in this stage, we can gain control of how we can live again and to make choices on how we can survive the bad news.  When PD was thrown into my face at a much-too-young age of 50, I was like "what the heck? Was I just hit by a MAC truck?"  I was riding on the waves of conflicting emotions for several months: denial, sadness, loss, fear, anger, insecurities, stress....... Then, there came a day when I knew I will never let PD rule me and that I will fight this disease with every fiber of my being.  I was angry but I channeled that anger into something positive in my life.  I wrote a song to encourage others and started writing a blog to bring hope to others like me.  I had grabbed my board and started paddling.  Every day is a challenge but I tell myself to keep paddling and kicking the stormy waters.  My board comes in the form of my faith, family and friends for they are the ones who help keep me afloat.  I pray that my blog will touch the lives of many, and help motivate people to start paddling & kicking.  Don't let your storm cloud your precious life because after the storm comes the rainbow.

Enjoy one of my favorite song The Eye of the Storm (turn off music box on top left before clicking on this link)

    

 

Fearless vs Fear Less

   Can a person be both fearless and yet, be plagued by fears; fear of the unknown, fear of losing a loved one, fear of being insignificant, fear of growing old with an incurable disease.....? Let us look at the definition of fearless (adjective): bold or brave, without fears.  They may as well put my name down as one of the definitions for fearless.  LOL.  Take this compound word and break it apart to fear less which is now a verb that means it is the act of not being in fear or not to be scared; to trust.

   I was born a rebel with a fearless spirit.  Even though I am of Asian descent which people often perceive as a quieter, polite and rule-abiding race, I was nowhere close to being your typical Asian.  I think I spent most of my life trying to disprove the stereotypical perceptions of Asians.  For example, I am NOT a slow and bad driver. I am sure most of you have pulled behind a pokey Asian driver driving 10 below the speed limit and you muttered under your breath, "Asian drivers!!"  No worries, I did too and my family is quick to remind me I am Asian.  However, they will also be the first to tell you I am a maniac behind the wheel.  I usually drive 10 over the limit and have little to no tolerance for pokey drivers.  My husband often yells at me to slow down and asks if I am racing.  I usually reply no but I know that is a total lie:)  Along with that fire within me to prove myself came the spirit of fearlessness.  Since I was a little girl, I can never say no to a challenge or dare.  When someone dared me to jump off the swing from the highest point, I obliged.  I was probably 5 :)  As a teenager, I took the car of a boy I just met at a party and drove off with my friend.  I did not have a driver's license.  I sailed often right before violent thunderstorms brewed and terrorized the waters (almost died once doing that), skied in the mountains of Japan on the Black Diamond trails as an amateur (almost killed myself but tore my knee ligament instead).....these are few of my fearless but stupid stunts I did in my youth.  I stared in the faces of death and danger but often, with no fear or perhaps it was stupidity:)

   So, does it mean since I am fearless, I live a life with no fears?  I can only wish.  In spite of all these fearless feats, I harbored lots of fears within me.   Some of these fears were learned and others came as life changes and ages.  As a little girl, I feared dangling my hands over the bed as I thought the monster was waiting under my bed to grab me into the abyss of Hades (hell).  As a teenager, I feared the rejection of my peers and seek to gain their approval.  As a young adult, I feared not making the right decision for my college major, career and marital choices.  As a parent now, I fear that my kids will get hurt by someone or something, that they will make mistakes that can jeopardize their future or I cannot protect them from life's disappointments.  As a person living with Parkinson's disease, I fear the unknown; how badly the disease is going to progress, what if my husband dies before me with no one to take care of me, my husband losing his corporate job and putting us in financial stress.  I have no doubt I have a FEARLESS spirit but what is most important for me is to learn to not fear or FEAR LESS.

   As a woman of faith and a Christ follower, a life verse comes into my mind.

"Fear not, for I am with you; do not be dismayed, for I am your God.

I will strengthen you and help you; I will uphold you with my righteous right hand."

Isaiah 41:10

Learning to fear less takes lots of guts and courage as you are surrendering all your fears to a Higher Power and learning to trust God that He will always provide.   Is it however a hard thing to do?  I do not see why it should be.  God has a proven record that He has done that for generations to generations.  In the book of Exodus, chapter 16 to 18, we learned that God provided for the Israelites when they wandered in the deserts of Mt. Sinai for 40 years.  He quenched their thirst with water from the rocks, appeased their hunger with manna from heaven and gave them quails to eat to fulfill their cravings.  I may not see manna falling from the heavens now but yet, I see God's provisions for me in my present day life.  I may not have been aware of His provisions when I was healthy and running around like a headless chicken but in my current medical condition and limitations, I can clearly see how God has provided for me over and over again.

   Story 1: With PD comes the issues of rigidity and so, I cannot sit still in one position for an extended period of time before I start getting uncomfortable and ultimately, in pain.   On a flight to Toronto from Chicago to visit my sisters, I was in the middle seat of a very crowded plane.  Even though I am only 5 feet tall, I started to worry about how I can stretch my legs when they cramp up from sitting in the same position.  I watched as every seat was taken all around me but no one came to my row.  I kept waiting until I heard the pilot announced, "flight attendants, prepare for take off."  I sat up and looked around, every seat was taken except the ones next to either side of me.  I quickly moved to the aisle seat, buckled my belt and turned sideways so I could stretched my right leg which is the one that gives me pain.  I looked heavenward and smiled. Thank you, God.  You knew what I needed even though I did not ask.  Only God.

   Story 2: We often have breakfast with moms, dads and grandparents at the school I work at.  It is fun for the students and families but troublesome for the staff as parking spaces are limited.  You have to make sure you get there much earlier than usual in order to secure a parking spot if not, you will have to park a mile away from school.  Once I totally forgot and when I pulled up to school, I was like oh man, I forgot so now I have to park a mile away and walk.  As I was driving out of the main lot, a car pulled out right in front of me.  Yes, jackpot!!!  I waved thank you and pulled into that much coveted spot.  Another teacher who had pulled into the main lot before me but waiting in the next aisle saw me and later asked how I got so lucky.  I only smiled and said, "I have direct connection to the Man upstairs" :)  Only God. 

   Story 3: It was torrential downpour as I was driving to the grocery store.  Great, it was hard enough to get out of the car but now, I have to deal with trying to open the umbrella.  Grumble, grumble, hating this disease, grumble, grumble.  As I pulled into a spot, rain stopped completely and I was happy.  No need to mess with an umbrella.  In the store, rain returned and was so heavy, it crashed loudly on the roofs of the store.  I sighed but oh well, I just had to wait it out until the rain stopped.  As I was at the check-out paying, I noticed the rain subsided and stopped.  Wow, how did I get so lucky?  Loaded the groceries and driving home, the rain started back up.  No worries, I have an attached garage and no issues there.  But I have to smile heavenward once again and go......Only God.

   Trust me, these 3 stories are just few of the many times God has chosen to show me His provisions in my hours of need since my diagnosis.  God has actually shown me how He has provided for me all my life. When my dad died at 53, my mom who was 42 then was left behind with 5 children; 22, 21, 20, 17(me) and 12.  Over and over again, God provided for my family; financially, physically and we were never left stranded.  So with all these accounts, why is it still hard for me to totally trust God and not fear about anything? Why am I still consumed with fear and find myself worrying much about nothing?  Haven't I learned from historical accounts from the Bible and my personal life, there is no need to fear?  I do not need to prove to anyone that I am fearless but I need to not fear about anything by starting to FEAR LESS.  

"Never will I leave you; never will I forsake you."

Hebrews 13:5

If God has consistently provided for me in the past, why then will I ever doubt that He will provide for me now, future and eternity?

   

   

Beyond Boxing

 For most people, walking is an automatic movement which requires little to no thought process, right?  That is not true for people with Parkinson's disease.  When I walk, I have to tell the control center of my brain to give commands in my head, "march, march, left, right, left, right, lift your feet, swing your arms........"  If not, I tend to drag my feet, shuffle, stumble, trip or fall.  It is hard enough to have to concentrate on the walking motion, and now add the challenge of having to maneuver around people and objects.  Even the slightest downhill slope of a path will cause me to lose my balance and fall forward.  Walking became my worst enemy, and something that I dread doing on a daily basis. Human movement relies on the interaction of automatic and cognitive control but in PD, automatic control is diminished as the brain has trouble producing a much needed neurotransmitter call dopamine.  This means that people with PD must make a conscious effort to accomplish simple tasks like walking, lifting objects, pulling or pushing...things that healthy people do automatically.  What are my options then?  A walking cane, wheel-chair........I was not ready to go there yet.

I have read many articles about Rock Steady Boxing: a boxing program designed to help people with PD.  It helps to lessen the symptoms of PD and aims to improve the quality of life for anyone inflicted with this incurable progressive disease.  Studies have also shown that boxing can slow down the progression of this disease.  Boxers have also demonstrated significant improvement in balance and walking functions over time when they participated in RSB. My movement disorder specialist highly recommended me to try RSB, and I thought to myself what do I have to lose?

The first time I entered the Rock Steady Boxing Chicago gym in Elgin (a suburb of Chicago), I remember all too well the look of determination on the faces of the boxers.  After all, they were all fighting the same monster in PD but yet, they were smiling and having fun.  The camaraderie was undeniably noticeably visible.  Everyone was welcoming and I immediately felt at home.  The 1-hour session was intense, fun and it flew by unexpectedly fast.  I had anticipated some boxing, lots of break and take-it-easy-on-these-poor-people-with-PD kind of regiments but boy, was I wrong.  It was like boot camp!!  You box 3 minutes, switch to balance/strength/flexibility/stretching workout stations and back to boxing.  This cycle continues for a complete hour with couple of quick water breaks.  By the end of the hour, I was exhausted, spent and totally rejuvenated!!  I barely had strength, balance and flexibility on that first day but I was inspired and motivated to want to box hard like the other veteran boxers.  I yearned for their strength and I told myself, I will get there.  I just have to!!

Knowing I have to return to teaching on August 17, I had to learn as much as I can from RSB Chicago so I currently box at both Elgin and Glen Ellyn 3-5 times a week since mid June,  2016.  I have learned so much from the amazing and dedicated coaches,  Susan and Mark.  I appreciate their attitudes and expertise as they encourage/motivate the boxers to push forward but yet, they wear the coat of compassion and patience when working with the boxers.  They challenge us with things I thought was hard to do, but often than not, I was pleasantly surprised at what the boxers and I can do. I always feel good and accomplished at the end of each session.   Only 2 months into RSB, I already feel like I have gained an extraordinary family: people from all walks of life with their own story to tell.  Best of all, in just short 2 months, I have noticed improvement in my walking and strength.  I am pumped and now, committed to keep boxing so I can beat PD as long as I can. 

One of the best part about RSB besides the program is its people: Mark & Susan, the selfless volunteer coaches and the determined boxers.  I appreciate and love hearing the different stories from coaches and boxers about how their life's journey brought them to RSB.  Every story is unique in its own way but the common theme is how we are using RSB to unite us in our common goal of taming the beast in PD: by fighting to slow down the progression of PD for the boxers and for the coaches, how they can help the boxers lead a better quality life.  Here are some stories which I hope will inspire.

 Susan is one of the head coaches of RSB Chicago.  I asked her why she started RSB and this is a synopsis of what she told me.

"RSB was an avenue for helping my friend, Ro.  She has PD.  I had graduated in 2005 with a MS in Clinical Exercise Physiology yet when I reflected back on my studies, there was no recollection of PD discussions. 2 events were catalysts to rethinking my course in life.  Coming out of a 6-month foot ankle injury, I had a plaque in my kitchen that was placed to remind me "The Purpose of Life is a Life of Purpose." I started to question how purposeFULL it was for me to help athletes run faster, to be stronger and to enhance the performance of able-bodied athletes to be bigger, faster and stronger. It certainly was not putting a spring in my step. My own long-term injury was an eye-opener as what do you do when you can' do what you've always done? My vision became global as I thought about my friend, Ro. I began to focus on helping folks move/shift their mode of exercise to be more manageable relative to their current disability. There was a billboard about RSB that perked my curiosity so I hopped on the internet, called Indy and by the time the conversation was over, there was a fire in my belly. RSB gave me the opportunity to utilize my education to improve lives, not race times.  Now at RSB, I have seen moon faces start to smile. I have heard laughter, saw silliness, friendships built and shared tears. There is light, hope, camaraderie and souls have been awaken. One of them is mine."

I like Alesha the moment I met her. She is one of the dedicated volunteer coach. When she told me to punch 1-2-shimmee-shimmee (where you shake your hips), I knew I was hooked:) Alesha has lost her 3 young children to spinal muscular atrophy, her last child recently in March, 2016.  I looked at this beautiful woman and questioned how she survived the tragedies of losing all her 3 children. I asked myself if I have the faith to overcome this loss and yet, Alesha seemed so grounded in her faith and at peace with her suffering.  She was invited by Natalie, a boxer to help people with PD and little did Alesha know that by volunteering at RSB, she was being helped instead. This is Alesha's story.

"All I can say is that I fell in love the first day I went to RSB. I love all the people and what it does for PD. But truly it has helped me in my grief journey.  It was like serendipity-I stumbled upon something truly wonderful while looking for something different. Meeting RSB was fate. Coming every week is a choice but falling in love with RSB was out of my control."

Jeremy is my favorite volunteer coach of all. Of course, he is.....he is my son:) This young man has been going to boxing with me whenever he did not have summer classes at Columbia. His dedication and enthusiasm to help me is priceless.  He spent many afternoons driving me to RSB without any complaints when he could have been enjoying his off days with his girlfriend. This is his last summer break to enjoy (as he is graduating in December) before he enters the real world but instead, he reserved it for his mother, me:)  This is why Jeremy volunteers.

"I feel so helpless when I see you struggle with the symptoms of PD. I want to help you so badly and often, I can't. However with boxing, if I can help slow down the progression, I absolutely will do anything to make it happen. It makes me feel good to help the other boxers too. I can tell the men step up their game in boxing because I am young, and they want to prove to themselves they can do it. I like to challenge them to do what they think is beyond them, and when they succeed, I feel good that I helped."

When I first met Gerri at RSB in Glen Ellyn, she was so friendly and immediately reached out to me. She approached me to hand me a towel and to say hi.  I truly appreciated that and this is Gerri's story.

"I was diagnosed with PD in 2007. I continued to work FT until May 2014 when I retired from 43 years of nursing. Since retiring, I wasn't sure what course my life would take. Then I received a letter from Northwestern where my doctor is stating that the next support group meeting, they invited RSB to talk and demonstrate. So, I went and after seeing their demonstration, I was "hooked"(no pun intended:) Since then, my life has never been the same. I am so grateful to Mark, Susan and RSB for coming into my life. I feel rejuvenated and motivated again to keep on moving and fighting back. My family has seen such a positive change in me. I feel stronger than ever and my balance has improved. I am inspired to get up in the morning. I am excited to go to Glen Ellyn to see my new family and to laugh and share our lives with each other. As you can probably see, RSB has not only helped me physically but it has done wonders for my psyche as well. I credit Susan, Mark and the volunteers for giving us the inspiration and motivation to keep trying. For creating an atmosphere of hope, family and love."

Frank has been at RSB Glen Ellyn since October 2014.

"Joining RSB was one of the best decisions I've ever made. The program offers a variety of rigorous non-contact boxing workouts that at times would put the healthiest individual to the test and hey, we get to listen to rock n roll music during the class too. What could be better? The coaches and volunteers make the workout fun, allowing the hour to go by before you know it. I honestly believe that my body has become stronger from RSB and I have more muscle control. All of us have some degrees of PD and there is a feeling of understanding, caring and compassion within the group of friends that I am very happy to be part of."

Terry is a personal friend of mine and we joined RSB together at the same time. Terry goes to the Elgin site and promised me she will try GE site one of these days:)  This is Terry's story.

"I joined RSB a few months ago because of all the positive things I heard and read about the program. I have to say it is all true. I have PD for 4 years now and RSB has really helped me with my strength and my overall well-being. The people in the class are probably what keeps me going every week. They are so supportive and positive about living with this disease, and are always willing to listen or answer any concerns or questions that I may have."

Dennis is also a fellow boxer at Elgin.  The first time I saw Dennis boxing, I was thinking, "this dude has PD? He is hitting with a lot of power and strength. I want to be like him." I am not quite there yet, Dennis but soon, I hope:)
"RSB has helped me by providing challenging/physical/fun activities that I am committed to.  Knowing that RSB is specifically targeted to those of us with PD has really helped me be disciplined in making this a life's priority. RSB has been a great source of encouragement for dealing in a positive way with the realities of PD. The fellowship is priceless!! I know God has allowed this to happen to benefit me and grow my faith. I believe RSB is a significant part of this process."

Sandy is one of the many selfless volunteers in Elgin. I love Sandy for her patience and being a retired nurse, she is always looking out to make sure everyone is okay. This is Sandy's story.
"I volunteer because God has given me an opportunity to give back to some wonderful individuals who happen to suffer from PD. The rewards are observing how hard these individuals work to improve their quality of life and the friendships built at RSB. I only provide encouragement but the boxers provide the energy and abilities to move forward."

The benefits of the Rock Steady Boxing is astoundingly positive and proven to show it works.  I still cannot believe others and I have seen huge improvements with my PD symptoms in such a short period of time.  I am so hopeful and encouraged that if RSB can help me that much in 2 months, I am confident I can hold the progression of PD at bay for a longer period of time.  That is so critical for the Young Onset PD group because we were dealt a cruel hand at a much earlier age, we need a plan of action to tame this beast as long as we can.  So, if you are not with a RSB group in your area, sign up now.  It will be the best decision you'll ever make.  If there is none in your area, approach a local gym or boxing gym to start one.  Contact RSB Headquarters, Indiana  and you will find the answers on how to start one in your area.  1,2,3 Go Rock Steady!!!!!!!!

Dodgeball;my favorite:)

Boxing in Elgin

Friends from Glen Ellyn

Art Therapy

Physical, occupational, speech, massage...therapies are all important aspects of an overall PD-managed plan.  However for a working person with PD like me, trying to find or make the time for these therapies can be quite challenging.  On the upside, I can afford the high costs of medical treatment because I have an excellent insurance plan with my employer but what about those people with PD who are retired or unemployed that cannot afford these therapies?  Have you consider another kind of therapy that is free, fun and rewarding?  Yes, I am referring to Art Therapy.  This Art Therapy can be in the form of writing, dancing, singing, painting, learning to play an instrument like a piano, sewing, cooking, gardening, woodworking or refurbishing old stuff.......the list goes on.  Art Therapy can perhaps rejuvenate our brains, enhances/stimulates our creativity, feeds our need to be productive, and an outlet for our inequities.  It is a stress reducer and it can provide a platform to express your strengths/talents and genuineness.  Making art also activates the whole brain and can foster integration of cognitive, emotional and sensory processes.   It is also found that emotions and art are closely connected; making art can aid in uplifting one's moods.  Also, through viewing one's own creation, one can improve the skill of self-observation and exploration.  Best of all, it is free and fun.  Personally, I love to write poems, songs and blogs.  Writing provides an outlet for me in living with PD.  It allows me to vent and release my pinned-up frustrations and emotions of living with a disease I have no control over.  Also with my poems, songs and blogs, I hope to inspire and encourage someone who is going through the same storm as I am.  That was the very reason I was inspired to write my first song I Will Choose (turn off music on top left first before watching this youtube video).  It started off as a simple poem and I was later prompted to turn it into a song.  I wrote those words in the middle of a night when I was trying to foresee my future with PD, and was in tears & fear as I know what my outcome looks like.  This song became my "fight song" and I know many who have been positively affected by the song.  I have 2 more songs in production and I hope to share it with you all soon.  Below, you will see another poem I wrote recently and I am also going to showcase some works that my friends with PD have done as their art therapy. C'mon, discover your own art therapy.  I promise you will not regret it.    

The Beast in Me

My life was forever changed 

When the beast came into my life.

In my private hell,

I must now learn to survive. 

Parkinson's disease is like

A beast unleashing his wrath. 

Devouring anything, anyone 

Who dares to cross his path. 

Hands reaching up,

Out of the fire. 

Destroying my life,

Is now his desire.

Heavy ball and chain,

Tied around my feet. 

Shuffle-drag-shuffle,

I now walk in defeat. 

Tormenting my mind,

Filling it up with lies. 

He whispers words of hopelessness,

To watch my spirit die. 

Continuous tremble

Like an earthquake. 

Unsteady movements

Along with tremors and shakes. 

Stumble, fumble, fall. 

He brings me to my knees. 

Sway left, sway right...

"Are you drunk?" he teased. 

He tortures me day & night;

My body, spirit & head. 

"You're worth nothing, my dear.

Just give up & stay in bed!"

To fight this beast

I look heaven bound. 

A peace that transcends understanding,

By God's grace, I found. 

Life is a choice 

On how we face adversities.  

Never give up, keep living 

Amidst harsh realities. 

On my knees I pray,

To rid of this beast. 

To find a cure fast

For this horrific disease. 

By

Dora Leonard

Here are some forms of Art Therapy you can try. (Turn off music box on top left before watching)

The Art of Video Production and Design (by my friend, Erika)

The Art of Dancing for PD

The Art of Song writing (by my friend, Arlon)

The Art of Singing

Here are some woodworking and refurbished projects by my dear friend, Erika Snider-Jimison who simply love to use her hands to create.  This is one art form I am not very good at but I do enjoy painting.  2 years ago I painted over 20+ ceramic christmas ornaments for the staff at my school, and I was surprised I did a great job. It was very therapeutic and surprisingly, relaxing.

May it be writing, singing, painting or learning to play the piano for the very first time, find something to do.  Join your church choir, buy a canvas and start painting, try writing simple poems or simply journal daily.  You may discover you love your art therapy and it may also be used to encourage and change the life of someone around you.  Mine did!!  

**Be sure to check out Gimme a Break, Motivations 101 and others**

April is Parkinson's Awareness Month

 
When I found out I had a lump in my left breast in 2011, people's reactions were in abundance with lots of acknowledgement of encouraging words.  The thought of breast cancer was enough to solicit many sympathetic reactions amongst anyone who knew of my situation.  However, when I was officially diagnosed with Parkinson's disease in 2013, I can honestly say that more than 75% of the people who knew about my diagnosis did not react with any acknowledgement of encouraging words or sympathy.  It felt like I just told people I had a cold, and it was not a big deal.  So, why the difference you ask?  I had thought much about this over the years.  I think the misconception and lack of knowledge about Parkinson's disease are the reasons why people think having PD is no big deal.  Unfortunately, it couldn't be more further from the truth.

   Did I know anything about PD before my diagnosis?  Honestly, NO!  Zippo, nada, clueless......I was.  All I knew was Muhammad Ali, Michael J. Fox had it and it was an old person's disease.  I knew people with PD (PWP) move slower, have tremors and it is not a disease that will kill you like cancer.  Sounds harmless, easy and painless, right?  Having lived with PD for over 2 years now, I have the knowledge and experiences that PD may very well be worse than cancer.

   When someone shares that they have cancer, our immediate thought is the horrific chemotherapy, pain, loss of hair and possible impending doom of death.  These thoughts cause us to feel sympathy and empathy for people inflicted with cancer.  People in general know so much more about cancer and its effects.  They often have known someone in their lifetime with this disease, and they can draw from those emotions when someone else shares they have cancer too.  However when someone shares they have PD, I am almost positive people's mind draw a blank as they lack knowledge about it and/or cannot relate to this disease.  Just because PWP do not show the battle scars of a cancer patient like their loss of hair and weight from chemo, it definitely does not mean life is normal and easy.  PWP's struggles/challenges are more private and often, many live in their private "hell".  People have commented that I do not look sick and have often complimented me on how good I look considering I have PD.  But they do not know the daily struggles I face every moment for if they do, they'll know I am not well.  

   Just imagine tying your feet with heavy cement blocks and walking uphill.  This is how I feel every time I take a step to walk.  When I am playing tug-of-war with my toilet paper because I lack the strength to tear it the first try, I know doing anything else requiring strength will be a challenge.  Getting dressed to go to work is a challenge and I am exhausted even before my day starts.  Putting on my pants is a struggle and even putting my shirt over my head leave me all tangled up as my muscles/movement is not cooperating with my brain.  From the time we wake up and even when we are asleep (like tossing and turning in bed), everything we do is movement and motion related.  With PD, the disease does everything in its power to stop that automatic natural process of movements. So, just imagine everything you do that require movement, you have a force consistently working against you and preventing your body to do what it is supposed to do.  Sounds exhausting and frustrating, right?  You bet.  That's why PWP get tired so easily.  It is a daily and constant battle which only will get worse in time.  Last Saturday, it took me almost 3 hours to swiffer my dining and living room because I was having trouble with my balance and the strength to get it cleaned right the first round.  I broke down in tears because I was so tired and frustrated of not being able to do the smallest and menial tasks.  Living with PD is also a daily psychological battle.  PWP all know that this is a degenerative progressive disease which means unless there is a cure, there is really no hope and no chance of us getting or feeling remotely better.  So every morning when we wake up, we have to will ourselves and body to fight through our challenges.  We have to mentally, emotionally and physically make a choice to push through this disease no matter what.  With cancer, people know if their chemo treatment is successful, they can return to their normal lives again. With PD, our current prognosis is we will never get better and our lives can never be normal again unless a miracle or cure happens in our lifetime.  PWP also live with pain from the moment they wake up and even in their sleep.  The disease causes rigidity in our bones and joints which then transcends into pain as our movement and motion is now unnatural, stiff and labored.  We also face psychological/emotional challenges because people tend to judge unkindly on this disease due to lack of knowledge.  PWP have been accused of being drunk because of balance issues, young PWP have often been stared down on and ridiculed because we move too slow for someone our age or accused of being lazy as we tend to get tired easily.  Some PWP are so self-conscious about their tremors, weird gait and dyskinesia (uncontrolled snake-like body movements) that they become a recluse in their own homes.  I can totally relate as I try to hide my hands under the table when my tremors are bad and I am self-conscious about it.  Our confidence is broken down and reduced that we need to remind ourselves that it is okay to be different.  Many advanced PWP are not able to drive or take care of themselves and require a care-taker.  Parkinson's disease is also a very costly one.  The medication alone is about $4,000 per month, and the meds are needed for the rest of the PWP lives to control the symptoms until a cure is found.  

   Cancer is a horrible disease and I am not making light of it.  However, with April being Parkinson's Awareness month, I need people to understand that PD is as horrific as the most feared cancer.  It is predicted that another 60,000 cases of PD will be diagnosed this year in addition to the million of Americans living with this disease now.  We all need to help find a cure.  My greatest fear now is for my children, grandchildren or great grandchildren to be inflicted with PD.  I want a cure more so for them than myself.  I want to do everything in my power to protect them from this horrible disease.  If anyone can consider contributing to this good cause, please donate to Michael J. Fox Foundation which leads the community in finding a cure for PD.  Please watch this video Faces of Parkinson's Disease (if reading blog from your computer, turn off music box on top left before watching video) which shows some of the people living with PD now who are choosing to fight for their lives.  PD is non-discriminating as some of the PWP in our support groups are as young as 14 years old.  It goes to show you PD is definitely NOT an old person's disease.  So when you come across a person with PD next, please do not tell them they don't look sick or think that PD is not big deal.  It is a big deal and we pray that people can be sensitive to PWP.  Please pray for us and help us find a cure. Together, we can all make a difference.  God bless.

**Please take a moment to check out Gimme a Break, Humor Me and other pages. (can't page from cellphones, only from computers)

Dedicated to Friends with Parkinson's (FWP)

Unwelcome Guest

You came into my life

Out of the blue.

Without an invite, I asked 

What happened, what did I do?

No reasons, no answers given.

You walked into my life nonetheless.

You marched right in and took over,

Turned my life into one big mess.

Climb into bed with me every night,

You lurk around in my sleep.

Staying around till morning breaks,

Causing me pain and cramp in my feet.

Never alone, you love to slow me down.

Just to make sure I know you're around.

You refuse to let me walk,

All I hear is the shuffling sound.

Life is hard with you in it,

I wish we have never crossed paths.

But looks like you're around for awhile,

Slowly devouring me in your wrath.

But you know what, unwanted guest?

You'll never take my will to live, my hope and peace.

You can try to tear me to smithereens,

But you WILL NEVER have me, Parkinson's Disease!!

By

Dora Leonard

**dedicated to my FWP-friends with Parkinson's Disease.  May you all continue to live in strength, hope, love, joy and peace.  May we all stand united to battle this ugly disease, and pray that we will be amongst the first to be cured from PD.  God's blessings,  FWP.

**Check out Humor Me, Gimme a Break and others. (these pages not accessible from cellphone; not smart enough:)

Springing into a Season of Hope and Renewal

   What is your favorite season of the year?  I have to say my choice of favorite season changes as I progress in age; winter as a child, spring as a young adult and now in my early 50s, definitely summer.  I have to admit that I had never seen snow as a little girl because I grew up in a tropical island near to the equator.  However, I have read about snow and watched in movies about beautiful white Christmases that made winter seemed so magical to me.  I just could not wait to experience winter and snow, thinking I will love winter for the rest of my life.  Then, I moved to Chicago..........

   Having lived in the suburbs of Chicago for the last 32 years made me realize I really do not like winter and the snow anymore.  The near-accidents I had driving in the snow, having to shovel my long driveway and a dog path in the backyard for my dogs, dirty salty car in my grimy salty garage, and the frigid temperature just make living with Parkinson's disease in the winter months so much more difficult.  Having to deal with the challenge of putting on my coat is enough for me to want to move to somewhere much warmer.  As much as I dislike winter now, I have to say I do like the 4 seasons.  With each spring, I cannot deny that the anticipation of the next season represents renewal and hope for something better.  The first sight of tulip peeking from the ground in my backyard brings much delight and excitement for spring.  Winter makes me appreciate all the beautiful days in spring, summer and autumn where I can hear birds chirping, enjoy the sunny days with clear blue sky and NO SNOW!!  However, every one knows that when you live in Chicago, the weather is as unpredictable as when the Cubs will win the next World Series:)  Just like today: the day started with temperature in the 50s and now, the forecast is calling for a winter snow watch from 9pm to 9am tomorrow.  Just when I thought spring is coming and staying, Mother Nature says......not so fast.

   The seasonal changes reminds me of what living with PD is like.  The unpredictability of the seasons reminds me of the unpredictability of living with PD.  You can be having a great day with few challenges but then out of nowhere, your day starts going south for no apparent reason.  It can be so frustrating because I can never predict how my day is going to be like which makes planning for special events/tasks seem so pointless.  On the flip side, just as the changes of the spring season brings about the anticipation of hope and renewal in life,  we can all choose to see hope for a cure, and renewal of the body/mind in the midst of living with PD.  The main and central key component in learning to live with PD is exercise.  Exercising and keeping active is an important part of healthy living for everyone but it is especially critical for people with Parkinson's as it helps with balance, mobility, flexibility, strength and motor coordination.  It has also been stated that exercise can slow the progression of the disease.  So, why not renew your body and mind with exercise?  Exercise daily to slow down your progression with the hope that a cure for PD will be in our near future.  Wait and expect your next change of the seasons in your life will be one of hope where people with Parkinson's will no longer have to be succumbed to the cruelty of living with a chronic, incurable and progressive disease.  While I wait for this cure, I will never give up the good fight, live every day to the fullest by doing what I love most and making a difference in the lives of the people around me, and choosing to love all people for who they are.

Summer Fun

Fallen leaves=approaching winter

My favorite season......NOT

Spring delight

Never giving up tennis, no matter what.
(Below: My friends who have played tennis with me for the last 20 years.)
These ladies have no mercy and still makes me run for the ball.  LOL

   

Angels without Wings

 

   "Friendship is not something you learn at school.  But if you haven't learned the meaning of friendship, you haven't really learned anything."- Muhammad Ali

   There is nothing that makes me sadder than when I see students at the elementary school I work at all alone and friendless.  They stick out like a sore thumb because you mainly see groups of children in clusters but not these students.  I will always reach out to these kids but they do not want my approval and acceptance: they want their peer's.  Often I wonder whose fault is it-the loner for not attempting to reach out to their peers or their peers for not including them?  Regardless of what the answer is, I know that no one is meant to be alone in life.  As Mother Teresa once said, "Loneliness and the feeling of unwanted is the most terrible poverty."  You can be the richest person on this earth but if you have no friends, material wealth alone can't buy you happiness.

   That is why I think it is critical for parents to teach and cultivate their child's ability to socialize and interact with their peers at an early age.  Teach them to develop the skill of making friends.  For some children, it may be innate in them to make friends easily but for the rest, it may take time and effort to do so.  I have been blessed because I do make friends easily since I was a little girl.  My family used to say I was like a parrot because I could not stop talking.  I will talk to anyone just about anything even to perfect strangers.  Just recently, my daughter reprimanded me for talking to people sitting next to us at a local restaurant.  She said I embarrassed her :) But hey, I will never have a shortage of friends and friends are so important in all ages of life especially when life throws you a curveball.

   Since my diagnosis of Parkinson's disease, I have a huge support group of family and friends; my husband and my 3 children, my siblings (my parents are both no longer with us), my friends and co-workers and now, the many friends I have made this past year from the online support groups for PD.  I seriously do not know how I can cope with this disease without these people.  My family and friends show their love and support by listening to me, crying with me, helping me when I struggle, making me laugh and forgetting my troubles, and lifting me in prayers.  Recently when I posted on FB about not being able to open the cap of my gas pump and the list of things I can't do is getting longer, Karen sensed my frustration and immediately called me.  She started singing the song I wrote I Will Choose to me and said, "we cannot have our biggest cheerleader feeling this way, can we?"  You see, I have never met Karen before as she lives in West Virginia but we became friends recently through a PD online support group. Yet, Karen has been such a blessing to me in spite of our distances.  Even the bible stresses the importance of friendship.

   "Two are better than one because they have a good return for their labor: If one of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up."    

Ecclesiastes 4:9-10

   

   So, please do not do life alone; quantity is not important but quality of your friends is.  Choose your friends wisely and your life will be so much sweeter and richer.  Everyone needs and deserves a friend or friends to walk with them in happy times and especially in trying times.  Here are few of the many people who are my daily reminders I am never alone............

My family

Love the dance moms

My wonderful crazy fun neighbors and friends

Dance moms just want to have fun and sweetest group of women ever

Friends from work

My beautiful sisters; they're my biggest supporters and prayer warriors

Don't you love how I was photoshopped in? That's what I get for being late. LOL, love my coworkers!

  

A special thanks to all my new friends I have encountered from the online PD support groups.  You all are amazing in spite of dealing with one of the worst diseases out there. Your courage, strength, openness, authentic and genuine care for each other is beyond comprehension.  My prayer for us is that someday a cure will be found, and we can then throw the biggest party ever!!! What do you say, Parkies??

**to go to Gimme a Break, Humor Me and others, use computers only as cellphones do not allow you to navigate to these pages.