As the clock struck midnight going into Christmas Eve morning, the strangest thing happened. A blessing was bestowed upon me. My neurologist increased the strength of one of my medicines on Monday and it seems to have kicked in. I came out of a frenetic fog as if a switch was turned on and my mind calmed itself. I was doing dishes at the time. Lee is asleep and it is still and quiet in our home. And I can feel the stillness. Its funny (strange) when this happens. Its only the fourth time in 7 years. You see, I don't normally feel stillness. It is more than likely you (the reader) do not realize how palpable stillness actually is because you take it for granted. I know I did. It is in this moment that I return to myself. Literally. I slip away so gradually that I don't realize it is happening until I am deeply lost in a mind that becomes constantly "on". Its hard to describe what it is like to be under the influence of Parkinsons Disease until I pop back out of it (as I have come to call it) and I realize I was gone. I should ask for help earlier but it doesn't occur to me that there is anything wrong. Its only when I return that I see the stark difference and I immediately thank God for another chance and almost always burst out crying tears of joy. In the blink of an eye. I am back. Again.
The light switch in the "ON" position starts my brain to think differently. My brain, I realized, was planning & reasoning. And I started to observe myself doing this. I didn't wrap presents yet (why did I wait so long?). I missed other people's milestones. Why haven't I called so-and-so? Why haven't I seen this other person in a long time? I need to cut vegetables for tomorrow. I started a to-do list. WAIT!!! How can this be happening? I look around and grab a ripe pear and take a bite. It was sweet and gritty and soft and I savored it. I ate it slowly. That confirms my suspicion. I don't eat slowly any more. I don't savor food, I don't relax and linger and hangout. Parkinsons robs me of the ability. When I am "in" Parkinsons everything speeds up. Not only movement, in the form of tremor, but my thought process. I have a tendency to do everything at warp speed and I have no idea why. It's exhausting. I realize I am doing it but I don't have the ability to slow the frantic nature. I lose patience more easily. Its hard to enjoy things like a long movie or a good book. I live with the feeling of always having to do something....right now! When you think about it that sort of is the nature of tremoring. Its stillness sped up to rapid fire jerky movements. It only seems natural that my brain would follow suit.
Today is the first day of my fourth opportunity to enjoy my life. Each day it will get better and easier, until I start to slip away again months from now. Its unpredictable. I don't really know how long exactly this respite will last. But I will savor every minute of it. I had a feeling 2016 was going to be a good year and this is a gift no one but God and science can give me. It is priceless. Lee asked me yesterday what I wanted for Christmas (because I hadn't answered him yet). I said "nothing, I'm good". What do you know? God went ahead and gave me what I really wanted and needed. A chance, once again, to be me. I don't know how many chances I will get so I will start this one in gratitude and tears of joy. Merry Christmas, indeed! I hope, like me, you get exactly what you need to find your peace and happiness. Oh, and do something for me - take a few minutes after reading this to recognize, savor and appreciate the stillness in your life. Take a deep breath and listen to the quiet. It is a precious gift that rights your ship. I pray you never have it taken away.
I am One Face of Parkinsons Disease
Today is a really good day.
Peace be with each of you.
Hi everyone! Exciting news to share...... I have been invited to be a guest on The Parkinson's Radio Hour here in South Florida on Thursday, February 25th from 6-7pm on AM station 1470. Its a 50,000 megawatt station that broadcasts to a population of more than 6,000,000 people. (Not scary at all!)
The interview topic is "Issues and Solutions for Early On-Set Parkinson Disease" and I will be interviewed by host, Jeff Dowd, along with University of Miami Movement Disorder Neurologist, Dr. Henry Moore. My doctors are part of the same U of M system, coincidentally.
I was recommended to the show's producer. The person who recommended me told them that I live with PD with a positive attitude and that I inspire others with and without PD. I have no idea who the person is but thank you for your kind words and I am so happy that you are inspired by me or my story. That is my mission, for sure. To make sure that all who don't have PD appreciate the stillness they don't even know they possess and to make sure that all who do have PD seek out the forms of treatment they need and that work for them. There are so many resources today there is no reason at all to suffer. If you are suffering with it or know someone who is, their mind is playing tricks with them and they don't realize there is a way out. It is up to you as their friend or caregiver to get them the help they need. Remember that when I slip back "into" Parkinson's that I don't realize that it has happened. I need my husband to say "its time" to see my doctor for a tune-up of my medications or to check my progress. He can see when I'm becoming lost; I can't - and neither can your friend or loved one. I'm hoping that my story helps just one person to be better, feel better, live better. Then this journey I've been on has been worth it.
If you can't listen in, the show is available afterwards on podcast. I will get you that address. This show was aired on a different station and those past programs are available at http://wbzt.iheart.com/media/podcast-parkinsons-radio-hour-parkinsonsradiohour/. Wish me luck and listen in if you can.
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"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."