Timing Is Everything

Timing Is Everything

People and situations have a way of occurring at just the right time in life. I think my PD has made me more aware of the happenings in my life. Both good and not so good….lately I had been focusing on the not so good. My oldest son had to set me straight by telling me that there are good things happening and what I was doing was not healthy for me either. Does being told to “get it together” by my child make me pathetic or a good parent? I’m going to go with good parent and that we did ok with son #1. Sons #2 & #3 have both met me with a hug when they knew I had a bad day. (I am going with good parent again) There’s no better feeling than realizing your kids have grown up to be good people.

In the middle of this not so good stuff, I managed to meet a spitfire lady who has had PD for 13+ years. Let me tell you, she hit our punching bag like she was on a mission. I have a previous blog post about the writing on the wall…she made me see that my story may just work out or at least be different than I expected. I’m not sure our paths will cross again but they did for an hour …. perfect timing!

I also attended an Advent by Candlelight service…another timely event. In all the prior years, the focus was usually on Mary, and most in attendance were women who look to Mary for guidance in their daily lives. This year was different…the speaker spoke about Joseph and his role as a father – the protector and provider. The audience was mostly women of all ages from young mothers to great grandmothers. I sat and listened as a mom who is watching the dynamic of her family change…my boys still need dad but not in the same way I had witnessed over the last 25 years. I am not quite sure how he feels about it. I think that he is happy and proud that we have done a good job (So far). But I really started to think about my dad. My mom was always like Wonder Woman ….cooking, cleaning and everything in between. My dad was like Batman. He took care of everything big when the bat signal appeared. However, in the everyday life, he quietly did more than we ever saw. No… he didn’t cook and clean. But he made sure that Wonder Woman never had to mow the lawn or pump her own gas. As they are getting older, I am helping them navigate the challenges they are facing, We all know that every hero needs a sidekick and I guess that’s me….just call me Robin….not the boy wonder, but Uber driver of the Batmobile.

So to all the superheros out there, but especially dads…. thank you and we love you!!

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The Writing on the Wall

How do we keep going when we see the writing on the wall?  Honestly, I am not quite sure. I hope my wall reads “She got knocked down 9 times but got up 10”

Ultimately, I don’t know what God has planned for me but I am headed in the right direction.  I went to college and earned a degree in engineering but I had also wanted to be a teacher.  As a young onset PWP, I now find myself teaching.  I have done presentations (yes…in front of people), write this blog and I am a rock steady coach.  Together, Valerie and I are changing the writing on the wall for myself and others.  We hope we have a better ending or at least a different one.

Until next time….”when you feel like quitting, remember why you started.”

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.

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.