"ADVERSITY HAPPENS"

    My thoughts after reading the New Yorker's article on Parkinson's Disease, April 28, 2014,  "Have You lost Your Mind?" ---

Apparently, many people who have PD are ashamed and/or embarrassed about the diagnosis.   Do they see it as a personal failure?   Or, maybe a defect?

My personal attitude is that 

1) it's not a personal failure - because, as far as I know, I had nothing to do with acquiring it,

2) and yes, it's a defect.  So What?  Does that make me "bad" or "undesirable"?     No way!

I've had a lot of personal success over the past 60 years, creating a strong self-image  (good news) - but, also strong enough to foster an un-healthy level of pride and independence (bad news -  too much of anything can become a negative, IMHO.)

Actually, I want people to know that I have PD.  I want people to know 'why' I look and respond the way I do.  Most of the time I'm smiling inside - something  desperately lacking in my demeanor.  (I've tried to notify my face, but unfortunately it doesn't respond to my mental commands  very well.) 

Because I had DBS surgery, My Parkinson's tremor is gone -- however, my speech has been extremely impacted.  I recently made a calling card to help break the ice with strangers:  

Today, at age 63, Parkinson's is not a 'career buster' for me, but rather a journey to a new place - mentally, physically, emotionally and spiritually. 

Fortunately, my diagnosis came at a time in my life when my vocation was morphing into a technological rat race.  I had been pleased with my accomplishments by age 55, but not necessarily excited about chasing the learning curve of the tech/video future.    (Maybe that apathy was a non-motor symptom of PD -- undetected at the time)   I was ready for a change - but not necessarily Parkinson's

Now, mind you, I'm not a stranger to change - having lived in numerous locations from:

               Philadelphia to Anchorage,   New York City to Detroit,

               North Hollywood to Modesto,  Sacramento and Yuba City, CA.  

Currently residing in North San Diego County, in retirement, I look back at the many hats I've worn since the 1960's: 

o   professional musician, magician/entertainer;  laborer/carpenter on the Alaska Pipeline;

o   construction superintendant;  racquetball and fitness club manager/owner; 

o   roller skating rink owner/operator;  Independent Business Owner with Amway Global; 

o   professional videographer  and audiovisual contractor,  producer/director. 

To be certain, I've had a very full life and my bucket list is small.  I'm sure there will be some surprises yet to come, but I have learned that  adversity happens.  How we respond to adversity determines our well-being in this life...and potentially, it determines our status in the next life to come. 

I don't like Parkinson's Disease.   It has grossly altered the dynamics of our lives - Beckie, our children and grandkids have been negatively impacted.  It has forced us into a place of pain and emotional trauma - a place, in some small way reminiscent of the trouble encountered by the ancient patriarch, JOB...a place of psychological and philosophical drama...a place,  however, where I am learning about faith and hope.  A place  where I'm connecting with my Creator -

A place where the 'glass is half full' --- always.

ACCORDING TO CAREY .... OUR FIRST GUEST POST!!

Our good friend, Carey, over at AccordingtoCarey, invited us to guest post for her October 31-day challenge: Surviving Chronic Illness. It's a privilege to share some hard-earned thoughts on the journey with her readers and with you. Sooner or later, you or someone you know will face an unexpected health crisis - this series could help with the process. Check it out and share, share, share! Beckie 


     If I were to list for you all the people in our life who have faced chronic or life-threatening illness you’d probably start running in the opposite direction. Suffice it to say, we know a few …. including ourselves. The one positive about this is, when meeting people for the first time who are facing a medical diagnosis, our personal story and experience give us some credibility.
     There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey. Through our blog we have the opportunity to connect with people from around the world. We find ourselves repeatedly talking about certain issues that I refer to as my “soapboxes” ….. one of them being advocacy.

ADVOCATE FOR YOUR PATIENT
     It’s pretty easy to find yourself overwhelmed in the medical process. There’s not just physical stuff going on, but the emotional side gets kicked around pretty well too. That’s why, as a patient, having an advocate is so very important. NO ONE should EVER be in hospital or attending doctor appts by themselves -- there's just too much room for error in the process ... especially when the patient is struggling physically or mentally, or is in pain. I’d say it’s next to impossible for the patient to advocate for themselves and a second 'ear' is always good when interpreting what the Doctors or other medical professionals might share with you. We often take my sister-in-law along with us to Ken’s neuro appointments. Many times she has been the ‘voice of reason’ for us, both during the appointment by offering pointed questions and later, as we attempted to piece together all the new information that had been offered.
     We live in amazing times and most likely the first thing most of us do when handed a medical diagnosis is to RUN to Google, so it may seem trite to remind you of some basics. But utilizing the ‘basics’ will eventually give you a strong foundation for understanding and analyzing everything that may come your way on this journey.
     So……
Join an online support group - these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)
Join a local support group -- these people will have invaluable information on what type of support is available locally. They’ve ‘been there, done that’
Ask for reading suggestions -- and don’t worry if it all seems like gibberish, it will eventually begin to make sense. It’s a lot like learning a new language.

ADVOCATE FOR YOURSELF    
     The patient in your life gets a lot of attention …. as well they should. But if you find yourself in the position of caretaking or advocating, you can’t forget yourself. There have been plenty of articles documenting stories of caretakers who actually pass before their patient. It’s very easy to focus, focus, focus on taking care of everyone else but you. Guess how I know this?
     I’m still learning to give myself permission to address my physical and emotional needs. My sister has been such a good example to me in this. Her husband has Frontal Temporal Disease and most of their life together, as they knew it, has disintegrated. She has found ways to nurture her heart and her body that allow her to gather her strength. She gets therapeutic massages for stress, she walks to and from work through all four seasons, she bought a kayak and spends quiet, restful moments on the lake, she surrounds herself with people who are encouragers in word and deed, and when she’s having a really hard day she makes Apple Dumplings. She’s practically world-renowned for those things! She takes care of herself, because no one else can.
     I’m learning from her. I also try to remind myself not to hold my breath figuratively. I’m trying not to put ‘life’ on hold as we walk out this process. It’s a really easy thing to do -- put your life on hold. Then you look back and realize you haven’t enjoyed the little, everyday moments that make up a life. I want to fully appreciate those moments -- reading out-loud from my mother-in-law’s journal as we complete yet another holiday round-trip drive, having the patience and time to let my grandkids ‘help’ prepare meals and together, work on a puzzle …. for the 10th time that day , and getting lost in the eyes of our 3-week-old newest grandgirl, knowing therein lies an ocean of love.

Facing down illness is a tough road, full of twists and turns with always challenging and ever changing terrain. The goal is to travel as gracefully as possible. Together, we can help each other do that.