50 is Fabulous!

My 50th birthday came and went by with wonderful memories with family and friends. It was just as it should be but I am different than your average 50 year old. I don’t view 50 as the new 40. I view 50 as a milestone. I made it to 50 as a young onset person with Parkinson’s without the use of replacement dopamine. I reached a goal I had set for myself when I embarked on this journey. So for me 50 is fabulous and my new milestone is 52. I am winning this round. Score one for this 50 year old chick!

I am almost 4 years into my diagnosis but I feel like I am just getting started. I have set a few lofty goals for myself. I am not sure where I am going but I am headed in the right direction with the support of wonderful family and friends. Here’s where we are….

fitness program….it’s growing

educational speaker….it’s happening again (I even participated in a live Facebook feed and survived!)

Clinical trials & research ….as much as I can

young onset support group…it’s coming

I hope to make a difference. I want to be a piece of the puzzle when someone finally solves it. We are all pieces….together we can and will solve this puzzle and many more.

Until next time, find your puzzle and finish it….all the pieces are there…you just need to find them.

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It’s Not Just Me…..

 

When life seems so overwhelming, I try to stop and realize what I have done and how far I have come in the last three years. However, It’s not just me …it’s my family too Receiving a life changing diagnosis…particularly one with no cure sucks. There is no way to make that easier. However, as horrible as it was for me, it must have been just as bad for my loved ones. To watch someone you love hurting while you are helpless is one of the worst feelings to experience.
As loved ones, your life is turned upside down but you are expected to be strong. After all, you were not given a diagnosis that has changed the course of your life….or were you? Yes. You were. The life you planned and the person you planned it with is not the same. The family dynamic changes…especially between a husband and a wife. That word caregiver gets thrown at you. We always knew we would care for one another but this is not what we planned.
I have reached the point in the post where I give major kudos to my family, especially my husband. He has mastered the balance between the two. He has found ways to support me that have ultimately brought some unexpected good things into our life. (Yes – dancing ) As for my boys, I have tried to be just mom. Despite my efforts, my PD has been part of their lives and it has influenced who they have become and our family relationships. From where I’m standing, they are doing ok and I am incredibly proud of them.
Until next time, laugh a little harder, hug a little longer, and face whatever life brings….standing together side by side.

Face Your Fears

I never knew how many fears I had until PD entered my world.  Traveling, especially flying has become one of my biggest fears with speaking or doing something in public a close second.  Recently, I did one so I could do the other.  Let me explain….

If you have read my previous posts, you know that exercise and fitness are front and center in my fight against PD.  However, I did not have any certifications…at least none that were official. I decided that I wanted to contribute to our program. With my husband’s encouragement and agreement to travel with me, I signed up for training at Rock Steady Boxing in Indianapolis.  So, I had to fly to get trained to be in front of people and teach classes. What was I thinking?

It didn’t start out well.  Airport security separated my medicine bag from my bin with my other belongings.  Panic ensues which leads to tremors which leads to “Miss Shaky” in the body scanner.  The TSA agent proceeds to tell me that next time I need to stand still.  Sorry.  Not going to happen and I tell her I have Parkinson’s.  Awkward silence and she tells me that I don’t need to be sorry. Success…the agent was educated on PD, my meds were safely put back in my bag and my faith in the TSA agents was restored. Not very exciting but I thought it should be part of the story.

Next, I had three days of training…the first two were almost 10 hour days. (Again-what was I thinking?) There were over 60 people in the room.  The instructor says you don’t have to raise your hand but ”Is there anyone here who has PD?”  Uh oh….me and 3 others put our hands in the air.  I was not trying to wave but there I was doing the tremor wave to a room full of people with puppy dog eyes….it’s the look you get when you tell someone you have PD.  I have nothing against puppies but Puppy dog eyes be damned.  I came here to learn how to box and kick some PD ass. (If ass offends you, I am sorry and stop reading.)  And I did both while the instructor joked and called me a badass throughout the training.  It was incredibly scary to walk in there alone but also very empowering.  I faced a fear, found a way through it and met some great people.  Most of the time, my partner was a very polite southern young man from Louisiana Tech who tried to call me maam.  That didn’t work. Maam was way too old for me.  It took some time but he eventually called me Miss Lori…not quite badass but ok.

Most importantly, I met some PD warriors I’ll never forget. Participating in a class with almost 40 people fighting the same opponent was truly an experience I cannot put into words.  I went in that room scared and tremoring but left a certified coach.  I have yet to face my fear of coaching a group of fellow PD warriors but I’m guessing they will help me along the way.  After all, we are all fighting and doing something we never thought we could.

Until next time, remember fear is temporary but regrets last forever!

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.

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.”