It is with deep sadness that I write to report this disease has taken its toll.
Like for too many before me, my marriage did not survive Parkinsons.
Twenty-three years. Through ups and downs. The searching, the waiting, the testing, the trials, the advances and the set backs. The losses are immeasurable. Parkinsons is a very tough disease to have - for both the sufferer and caregivers, especially spouses.
Your spouse watches painfully as you go through the loss of motor skills and memory; through sense of smell and loss of equilibrium. The dopamine fluctuations that accompany increasing doses causes me to go in and out of Parkinsons in rapid cycles brought on, in large part by STRESS that I was once able to shrug off like a pro. Hands down, stress is the number one enemy of PD.
Parkinsons stole the old me, my charmed life and dreams, my company, my financial stability, my ability to cope with stressors, gave me mood swings and completely sleepness nights where I saw both the sunset and the sunrise without being able to close an eye. Along the way my personality changed and I became a burden. I became unable to commit to weekend plans. Consistently forgetful. Unable or unwilling to experience anything new. I became stuck in routine to desperately maintain order (so critical to staying calm and focused). Chaos and overstimulation confuses my once perfectly, masterful, super human multi-tasking, control freaky brain. It now operates from a more childlike and rebellious place because I am pretty sure it is pissed off at being taken over.
So I am thrust alone into the world with a giant empty slate wiped clean with every choice imaginable and its all too much for my brain to cope with. The very definition of chaos. Starting over. Too many choices and no routine. I am experiencing daily dopamine dumps. This happens when it becomes scared. I have no control whatsoever over its freak out sessions. Every brain experiences this when you ride a roller coaster, for example. A normal brain replenishes itself right away. All of my dopamine dumps out and cannot fill itself. I go into a full on MJF rock and roll at unexpected, sometimes inappropriate moments. Day-after-day-after day since moving out I have this happening. It is leaving me shaky, pale, tired, devoid of bodily functions and motivation. I fear it won't rest until I find settled order and a routine once again. Until then I am on medical leave to deal with my confused state (which I am not used to being in). Luckily I have an amazing support team that has rallied around me to take control and jump into action. I am one of the more fortunate ones to have that solid foundation. I used to possess that foundation myself. I was the rescuer able to do that for someone else in crisis. Now I accept my new caregivers' help with grace and gratitude.
I miss the old me. Perhaps this is a good thing. I am only 52 now and to live in the same routine bubble for the rest of my life would seem unfathomable to the old me. Perhaps I can re-train my brain out of necessity to snap out of the need for a safe routine and not be afraid of what lies ahead. Every day I pray for answers and protection. Perhaps my fear is the prospect of being unable to fend for myself. Lets hope that's not going to be at the end of my journey.
My medical professional team is working on solutions for me and as with many I am waiting for new therapies to halt PD's progression. I still live in hope and gratitude for what I have, not what I've lost. Today I lose a big part of my identity. Tomorrow I take baby steps toward a new one.
I pray for those experiencing the same stage as me. I know how you feel. Give yourself time, patience and love. Together we will get through this. I wonder what's on the other side. Somewhere down the road.
Peace in the stillness
Goofing around one night My girlfriends and I hatched a plan to win the lottery and fly to France. I wrote them this poem prayer in about 15 minutes to help make our dream come true.....
Now I lay me down to sleep,
I pray the lotto numbers will creep,
into my head before I wake,
so off to France with friends I'll take.
Open my eyes, a surprise there will be
A shiny new jet looking back at me.
All fueled up for a flight overseas
Hey girls, you with me?? I hear, "Yes! Yes! Please!"
French champagne and Rosetta Stone
will get us prepared for the great unknown.
We just need Rosetta to teach us to say
"I'll take one in each color!" That will make our day!
Tell me this isn't just a dream
We pine for those bags in blue and in green.
To see them in person would make us scream
"What an amazing plan we hatched as a team"!
The girls of MSA have taste
Thank you Liz and team for giving us this place
To dream big dreams that take us away
From everyday lives where we get a chance to play.
Come on Lotto numbers, I know you are there
I pray you'll appear from out of thin air
This dream is so real for one and for all
You just need to gimme five numbers..... and the PowerBall.
It never hurts to DREAM BIG!!!
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."