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

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“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….

My journey began…

My PD journey began with a perfect storm of events. I had been doing a rigorous exercise program called “Grit” and I joked that no one at my age of 45 had any business doing this program. After a few months of Grit, I noticed my left arm not keeping up with my right arm while doing anything involving lifting weights. Eventually, I had pain in my left shoulder and no grip strength. After weeks of PT, I was referred to a neurosurgeon who performed an MRI, which revealed spinal compression. Surgery was recommended. Fine. Fix it. Before surgery, a nerve conduction test was required to make sure my nerves were not compromised. Fortunately (or maybe unfortunately) for me, the doctor doing the nerve test was a movement disorder specialist. After the test, he put me through some motor skills exercises and casually remarked…”I don’t normally do this, but I think you may have Parkinson’s.” Just like that my world blew up. My oldest son – who was a Physician’s Assistant student in college – was with me. He was there to observe and learn, but ended up having to hold me together. My husband was not there as we both thought this was a routine event.

For the next couple weeks, the neurosurgeon and the neurologist tried to figure out the best course of action. It was decided that PD or not, my spine needed to be fixed. Surgery, PT and OT followed over the next couple of months of medical limbo. I would have gone down a very deep hole without my psychologist who basically let me cry in her office twice a week. I had no real diagnosis, and was trying desperately to rehab after my surgery. I was working hard but I was spiraling and losing weight. I finally found a doctor at a leading research hospital. She ordered a DAT scan. This process started in June and I had my scan and confirmation of the diagnosis in December 2014. It was official then, but in my heart I knew it well before I saw the results.

I cried a lot and felt incredibly guilty for bringing this into our lives. I was in a fog and just went through the motions of my life. My doctor didn’t baby me. I needed to get my weight and everything else under control. I had lost 15 pounds over those months and I looked horrible. A doctor said to me “People live with PD, and they die with PD but they don’t die FROM PD.” This will not kill me. I will be here for my three boys. One of my sons said to me “It’s physical mom – you are still you.” And my father, bless his heart, had this pearl of wisdom – “so you shake a little, we still love you.”

So, I needed to attack this. I researched everything. One common thread was exercise. I honestly think that my PD was around for a couple years but I was always active and probably kept it in check. I have tried to read books but most of them end up in the bottom of my closet because I will politely call them “Debbie Downers.” That was until I read Brian Grant’s story in a Neurology Now magazine. As I read it, I just kept saying “Exactly…that’s exactly how I felt.” The article led me to his foundation and the Power Through Project. No more Debbie Downers…every story has the same underlying theme….exercise is powerful and can be the best medicine. You can make a difference in your quality of life. You can choose to fight this disease.

Although I do not want PD to define me, it has changed life and my family’s lives. My relationship with my husband is stronger now than it has ever been. You truly learn how strong your marriage is when you are faced with a diagnosis that will change what you expected your future to be. He is my rock and I would not have gotten this far without him. He lets me cry when I need to but also knows when I need some tough love. He tells me when the pity party is over and it’s time to move on. It’s a fine line that he seems to have mastered.

One doctor recommended dance lessons so we started taking weekly ballroom dance lessons working our way up to the beginning steps of the Argentine Tango, the dance the doctor recommended. I am proud to say that we have been committed to it for a year. Our teacher is tough on us. My PD is not an excuse for a poor frame or taking little steps. Dancing is not something that I thought we would ever do together except for the typical family weddings. Our boys have said, “Never in a million years would we have guessed that dad would take dance lessons.” It shocks them to see us going to formal dances – complete with a tux and gown. Dancing is truly amazing and I recommend it to everyone. I forget I have PD when we are trying to master our moves.

As for my three boys, they are incredible young men. They are there for me when I need a hug while fighting off a panic attack or if I just need to take a rest. I hope my PD helps them to develop a sense of empathy for anyone who has an ongoing battle. But, most importantly, I hope it allows my husband and I to show them how to love someone unconditionally in a marriage. I still need to be a mom and a wife. My PD does not change the fact that they need me now and into the future. I will be that cool Grandma someday.

I am a very faith filled person and I know this is part of God’s plan for me. I’m still trying to figure out the plan, come to peace with it and follow it wherever it may lead me. My family and friends are my constant companions on this journey and they are the reason I keep fighting. I am blessed to have them cheering me on and never letting me give up because failure is not an option. I know that life will be different but it can still be great. I can choose to be happy and continue to “dance like no one is watching.” It’s Parkinson’s or me and I choose ME