The Snowflake Disease

I read on an online Forum that PD is called the “Snowflake disease” because no two instances are the same.  While that is true, I think there’s more to this analogy.

As I read more about the journey of a snowflake, I learned a different reason why PD may be called the snowflake disease.  When you envision a snowflake, it’s ornate and delicate.  However, there’s more to the story.  The journey of a snowflake can be a bumpy one.  It’s filled with twists and turns.  It bounces into other snowflakes, different atmospheres on it’s ride with gravity.  Despite these hurdles, the snowflake perseveres to its ultimate destination.

Over the last 4 years, I have met many People with Parkinsons.  Yes, we are all different and our journeys are different as well. Many of us are fighters and through all the twists and turns we keep moving and stay strong.  We all share the hope that there will be a world without PD for us and future generations.  Our ultimate destination….life with a cure.

Until next time, stumble through the twists and the turns life brings your way. However,  remember snowflakes are stronger than they seem to be.

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DA-DA-DOINK

I’m back to share my thoughts on guitar lessons.  I was very skeptical when I first started.  It’s challenging but also really fun.  I may have to put a guitar on my Christmas list (and include ear plugs for those around me).  I have mastered “Rain, Rain, Go Away” but “Twinkle, Twinkle Little Star” has been tough.

I have discovered I am a “Doinker.”  My sequence is “DA DA DOINK”  and that’s not a good sound.  While working out and getting in shape, I have neglected my fingers.  Every other muscle is strong but my fingers are little weaklings.  I have trouble holding the string down on the “fret” and thus the “DOINK” rather than the last “DA.”  And yes…I said Fret…the sections on the neck of the guitar.  I have learned some lingo over the last few weeks.

Just like our fitness group and folks at the Symposium I attended, the guitar study has introduced me to a cool group of individuals from different areas and at different stages of PD. Some are quiet, some are chatty and I am the class clown (now I know where my son gets it).  However, we all share the common thread of doing what we can to help ourselves manage our symptoms and stay hopeful.   I asked our instructor what he thought of the group of Parkies he was trying to teach.  He responded that we are one of his favorite classes because we all want to be there.  Yes, I’m sure he was being polite but I do know what he meant.  We chose to be there, rather than being told we would be there. We have all made some new friends and learned that music and playing an instrument is another tool in the PD toolbox.

Until next time, music is the universal language so play some music and keep dancing!

SIDENOTE:  We just crossed off another bucket list adventure by going to Nashville and I was constantly noticing the guitar players. Some can play the guitar, sing and drink beer or whiskey all at the same time.   Amazing talent in the heart of Nashville..if you like music (any music – it’s not all country) it is worth the trip.

Give and Take

To end PD awareness month, this is short and sweet….

Before you continue reading…. Make no mistake about it, I want a cure for PD.  However, I would not give back the last three years of my life…ok…now continue…

In my first blog three years ago, I said that I would not let my PD define me, but that is impossible. I face it every day and I have changed.  However, not in a way you envision.  Yes, I have seen some progression in my symptoms but there is more to it.  I look at life differently.  Every day is a day of small goals.  I take do not take anything or anyone for granted. I try to be present in my life…….in that moment.  I participate in studies, educate myself and share my story with the hope that I may make a difference in the lives of others with PD.

While PD is a disease that takes and takes over a period of time, I hope this blog was able to show that my journey with Young Onset PD has given me and my “family” some things as well….dancing, new friends, better relationships, road trips, family adventures and a different perspective on what life has waiting for us.

I have had some requests to not wait three years to blog again so watch for posts every once in awhile.  For now, I must end with a dance reference …. “If you stumble, make it a part of the dance.”

 

Until next time…

 

“Be kind.  For everyone you meet is fighting a hard battle.”  -Plato

“Family”

I had planned to save this post for the closing of Parkinson’s awareness month but it needed to be shared earlier.  My Uncle Billy, our family patriarch, passed away this week.  He will be greatly missed.  He was a shining example of the blessing I have in my family.  Uncle Billy…this post is for you…..

Michael J Fox said,  ”Family is not an important thing, it is everything.”

I have said that I am not sure what God’s plan was for me on this journey but I believe the answer is my incredible “family.”

First my immediate and extended family….

Mike and my boys, Adam, Ryan and Zachary are my everything.  Mike supports everything I do and he is my rock. He makes me laugh by making faces in the mirror when our dance teacher is pushing me and I pout. (I love her for it). He will bust a move with me any chance we get – dancefloor not required because we will make our own. I never thought that 3 years later dancing would be still part of my journey.  It’s actually one of the best parts of this bumpy ride.  We have fun with it and it’s been an example for our sons of what you do for someone you love unconditionally. Speaking of my sons, they always say “I love you,” when I call to check up on them or when they are running out of the house.  Those three words can get me through a tough day.

I have a great extended family… my parents, in-laws, siblings, aunts, uncles and cousins  all say just the right thing when I need them.  A bonus to an Italian family…there’s always an aunt, uncle or cousin ready to help and to feed you. They are ready to pick you up before you know you have fallen.  They may not even actually be an aunt or uncle, but when you are Italian – EVERYBODY is related.  (HINT: An Italian with food to offer is something I cannot describe.  All I know is it is useless to resist.)

My other family…

Those who have faced my diagnosis right along with me…the good, the bad and the ugly.   They are my friends who are my “angels” in disguise.

There are my friends who road trip with me just because we can, those who are my prayer warriors and my coffee partners and those who just happen to call or text me just when I need them. Some I see regularly and others only occasionally, but it doesn’t matter. As my one friend says, “We are foxhole friends.”   She would take me in her foxhole…PD be damned!

I have a trainer who is a great friend and never lets me quit and my exercise warriors.  They are bravest people I have ever met, but one of them is my hero – my mom.  She is bravely fighting her way back from a stroke and encouraging me to keep fighting right along with her.   In trying to help myself, I have learned to help others.  So, for now, that is the plan…help others be strong and fight right beside them.

I have come to believe that your attitude and mindset can make you or break you. There’s research, meds, great doctors, exercise – tons of it, and a whole lot of faith. I have faith that when I’m exhausted and ready to quit…God is going to give me what I need. It won’t be a beam of light and angels soaring. It’s going to be my “family” stepping in to pick me up or kicking my butt to get me going.

So, to my “family”…. I love you very much and  I thank you all from the bottom of my heart.

Until next time…..say “I love you” and hug your husband, wife, kids, parents, brothers and sisters…..your “family.”

Not in the Plan

“We must be willing to let go of the life we’ve planned so as to have the life that is waiting for us.” Joseph Campbell

I had a plan and Parkinson’s was not part of it.  Period….end of discussion.  Yet, here I am three years into my journey with Young Onset Parkinson’s and my life is different.

I have experienced it all….denial, guilt, anger, grief and acceptance.  I have found my new normal and I have begun to live the life that is waiting for me. I’m sure there will be both good and bad days.  I’m just going to look for the good ones but on the bad days, I’m going make a great martini…..shaken not stirred!

Until next time… dance like no one is watching!

Bucket List

“Don’t make a bucket list…live your list…whatever it may be”

Mike said to me, “This is going to be hard but we are going to have fun and we are in this together.”  So, over the past three years, we have set out to “live our list.” We want our bucket list to include new experiences, but we also want to appreciate the “here and now.”

We enjoyed our 25th wedding anniversary trip, complete with a vow renewal on the beach. Thumbs up to Reverend Ron!   And we have had some incredible family adventures recently that have created memories of a lifetime.  But the family stuff is what really matters….. Adam’s graduation from PA graduate school (and now “adulting” in the real world), Zachary’s killing it in his first lead in a musical, and Ryan doing his thing at PITT.

As time marches on, we realize that we are “living our list.”

We do have one new experience planned — going to Nashville in May.  We will find out if our dance moves will look anything like the country two step.    But let’s face it….it doesn’t really matter…we dance like no one is watching!

So until next time….be present in your life because sometimes the bucket list is right in front of you.

Welcome to Year 3

Year 3ish –

So, it has taken me 3 years to post another part of my journey….what have I been doing?  The truth is I’ve been busy and the good news is that I’ve been blessed with a slow progression.  The bad news is I still have PD…Damn.

I have become quite active on a PD online forum.  I’m always posting quotes or pictures. As Parkinson’s awareness month approaches, I thought I would share some of my favorites. I will say the MJ Fox is my “goto” guy for some great quotes.

“Acceptance doesn’t mean resignation.  It means understanding that something is what it is and there’s got to be a way through it.” MJ Fox

I have come to accept and adapt to my new normal with lots of help and incredible support from my friends and family, but especially my husband, Mike.  One way through my PD is exercise. Together with my friend and trainer, Valerie, we started a PD fitness and wellness program.  As a result, the gym has become my second home, our basement my workout room and I rarely cook dinner. (Let’s pretend I cooked.)  However, through it all, Mike has been in my corner urging me to stick with it. He knows the program and the people have been life savers for me….together we shake it until we make it.  He also knows he has benefited from my lack of cooking.  I have discovered HelloFresh and Zachary’s culinary skills as the dinner guy in the DePorter house. He is quite the chef. (A big thank you to the kitchen ladies at his grade school for allowing him in the cooking club…they got him started.)

Yes…we are still dancing but that will get it’s own blog post later.

So, there you have it….the start of a new chapter in my journey with PD.   Stay tuned….