Everyone who follows me knows I am a bright light for upbeat and positive living to deal with my Parkinson's Disease. This morning brought about a REALITY CHECK in this letter to my family (please excuse the expletives for which I have earned and am unapologetic after 8 1/2 years on my PD journey.) I write :
To My Family,
I've just made it through another sleepless night after not being able to stay asleep. Thank you Parkinsons-induced insomnia. I officially hate you.
My problem? A skyrocketing level of stress I cannot shake after the experience of going off my meds TWICE and witnessing my underlying condition. My body hidden by bottles of expensive medication is unable to breath comfortably at my diaphragm, my neck contorts my head to the right and upward pulling my chin diagonally away from my body painfully out of control, all while my muscle twist and turn in agony as I cry out loud then sob with each misfiring nerve in all my limbs; all four stuck straight out from my body like a corpse. I cannot sleep. I cannot walk. I have no reflexes in my legs. Everything hurts. I have Stage 4 Parkinsons under this expensive medication. I am scared shitless and I cannot handle this by myself.
My fears are exacerbated by living alone, which I've never done before. I've officially failed at my attempt. My fears foster a depression that disappears as soon as I am with you. I want to live a happy, full, healthy, active life. I want to jump out of bed in the morning and enjoy a productive day. Those days are gone. Replaced with no motivation to get out of bed or leave my apartment under the weight of constant panic. I feel like the earth is rumbling beneath me. I'm on very shaky ground and trying desperately to hide. Another person's energy is all it takes to light mine up and motivates me to make shit happen. I take my meds on time and completely forget I even have it. It is clearly night and day and there is no doubt about it. Living alone has taken its toll since dad died and I am struggling. I woke up yesterday morning with the highest stress levels I've had since coming back to Florida in 2013. Frankly, I scared the crap out of myself and was sure I was going to be making a trip to the ER for the sheer inability to get my out of control rapid heart beat pounding in my chest under control. I swore it was going to end in a heart attack That's it. I've had it. Now I'm pissed off and I need to take action now. I refuse to live this way.
Asking for help does not come easy or naturally for me. I'm usually the one that gives it. I refuse to continue to pretend I can handle this. I can't. I need to recover from the last 12 months of constant change. I went from Stage 2 to Stage 4 PD in only a handful of months. I need to reverse this and quickly. I refuse to let it get any worse and the first step on my road back is to get out of here.
I waiting for the landlord's answer to vacating my lease early. Mom has offered to take me in to care for me. I gratefully accept her offer.
I am not waiting for PD's answer. Only I can reverse this mental ping pong. I need to get on with living, not dying, and the first step is to rejoin the world by stop feeling sorry for myself. The last 12 months have been challenging to say the least. I promise to admit what I can and cannot do. Do what I can to the best of my ability and quit trying to make everything perfect. That was my old life. I am not okay on my own. I need to eat, sleep, exercise, meditate, take my meds on time, dream, create, laugh, run, ride my bike 10 miles a day, and fucking enjoy life while my meds still work. Like Cinderella I can magically walk and run but don't know how or why. I need to stop thinking and start living before I turn into a giant pumpkin. RECOVERY WILL NEVER HAPPEN LIVING ON MY OWN. I am not wasting another day. This is a 10 round match. PD may have won round 4. Round 5 ends in a knock out. I've had enough of this shit. I need to get over myself. Whatever you do, do not allow me to live on my own. I suck at it. Royally. Come see me and bring a ladder so I can climb out of this mother fucking hole I have made. I've got important shit to do. Losing to Parkinsons is NOT one of them. Not today.
MORAL OF THE STORY: Be careful NOT to tick off a warrior. We fight back dirty!!!
Good morning, friends! I woke up to the most amazing surprise in my email; it shocked me straight awake. It was from the founder of Feedspot.com, the RSS Feed for bloggers. informing me that my blog has been named one of the TOP 50 PARKINSONS BLOGS on the web today. Click here to see their full story: http://blog.feedspot.com/parkinson_blogs/
The founder, Anuj Agarwal wrote: "I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 50 Parkinson Blogs on the internet and I’m honored to have you as part of this!" To say this is a shock is way understating how I feel at the moment.
Their RSS Feed is subscribed by all of the major news organizations (TV, radio, print). If you don't know what an RSS Feed is - you can subscribe to many different publications and Feedpost will send you an email each morning with headlines so you can read what you are interested in vs. having to read every single website individually. Feedsport.com is offering my blog as one of the 50 choices for Parkinson's information available. Please check it out. Go to FEEDSPOT.COM, open an account for yourself and subscribe to my blog along with other amazing outlets, including the Michael J. Fox Foundation, the National Parkinsons Foundation, Parkinsons News Today and the Brian Grant Foundation! I am in their amazing company.
I know I need to breathe, but am having a bit of a hard time doing that. Isn't it funny and incredibly humbling when your life changes in a nanosecond? Synchronicity still thinks I have a way to go before I am perfectly in balance so I give up my control and let the Universe keep re-arranging. Friends, we are on the ride of our lives.
Thank you to Anuj and his crew for this honor. Thank you God for my life every single day. I have a beautiful life I would not trade for anything with beautiful loves and angels surrounding me at all times. Amen.
Kindly pardon the language unbecoming.....
Yesterday was Sunday, January 15th. The 8th Anniversary of my first doctor visit for a complaint that consisted of "why does it feel like the left side of my body is dying off?" My PCP looked at me and said "Dying off?". I said "YES! Weird, isn't it?" That was January 15, 2009. And that conversation sent us on a very long & expensive 5 year odyssey that landed me in a movement disorder neurologist's office in December 2013 with the proclamation that "Yes, the DATSCAN does show that, in fact, you have EARLY ONSET PARKINSON'S DISEASE" The Michael J Fox kind. Welcome to your new life. Today marks 2,920 days.
How was my anniversary? Well, Sunday was a beautiful day connecting with friends, catching up and making plans. A great distraction for me because, physically, it was a really shitty continuous tremor day. The non-stop, calorie burning, adrenaline rushing, can't sit still, pain in my ass (and legs and curled toes and stiff fingers) that ultimately won't let me go to sleep just to piss me off kind of day. LUCKILY, that experience is NOT my every day. I am one of the fortunate. But here is what I have to say.......Parkinson's - I am not giving up. You like to test my endurance but I take whatever you throw at me every single time. I had no idea how tough my will is until you came along. Tonight I say my prayers with a smile on my face that says, "I WIN". I will never, ever, ever give up. Ever. The less I pay attention to you the better off I am. Tomorrow I will wake up and the new day will begin calm once again. And I will make a positive difference in someone's life.
I'm on a mission. Just try to stop me.
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
I am so fortunate to have an amazing Super Hero Support Team to help me through my Journey. Friends have shown their love through surprise pieces I received in the mail this year. I was just admiring them in my jewelry box and thought I would share them with you. They make me smile and fill my heart.
The sterling silver cuff is engraved with my favorite quote (that is found in the footer of my website). I admire Eleanor Roosevelt; a strong woman at a time when women were not expected to excel. She wrote: "The future belongs to those who BELIEVE in the beauty of their dreams." Yes it does.
The brass cuff carries a quote from "Alice's Adventures in Wonderland" by Lewis Carroll. Perfect for those whose lives have been changed drastically. It reads "I can't go back to yesterday because I was a different person then." This reminds me not to dwell on what "was" when my life was so much easier. The day it arrived it made me cry. It is so true. We can't go back, but the future has so much to look forward to, as well.
The last pieces are GIVING KEYS. You know they are one of my favorite charitable organizations supporting those coming out of homelessness in Los Angeles. My bracelet is emblazoned with "STRENGTH". My necklace is stamped with "HOPE". Hope and Strength - two pillars of my life that are deep in my roots. My mother is my role model. Thanks to her, I muster both of these, get up, go out and conquer every day. Thanks Mom.
What reminds you to stay positive and motivated every day? A special thank you to my girlfriends who sent each to me.
I am not sure how much you see that I've become so proficient at the Superwoman thing that when difficult days pop up it may be hard for others around me to grasp how incredibly hard I am working - in that moment (and every moment) - to keep it together.
No doubt about it. I muster up every ounce of everything I am to push through. Tamp it down. Crawl up over it. GET UP. SHOW UP. I zig. I zag. My brain goes into overdrive to find the solution to stay on the rails. And then BANG, I get it done. I NEVER GIVE UP. EVER. I had no idea how strong and courageous I could be until Parkinson's Disease.
I may not appear to have PD in person thanks to life giving meds and my inner resolve. The downside to that is getting the help I need when I need it. Please don't forget I have Parkinson's Disease. If you see me struggling please help me. Find encouraging words. Tell me it's going to be okay. Hold my hand. Don't be afraid. Your strength becomes my strength. Hug me until I stop shaking. Say a prayer with me.
Each of you are my guardian angel. You are with me in those moments. My SuperHero support team; my shining lights. No one is luckier than me.
Okay people....We got this....Let's do this......
Just in case I need emergency assistance. I will be ready.
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."