62….really I’m 62, when the hell did that happen? I cant wrap my head around the fact that it seemed like just yesterday that i was 40, and I thought I was old.
My mind tells me I’m still in my……maybe 30’s, my fashion is young and current. I look in the mirror…..love the short hair. I look again, oh fuck, that’s me, grey short hair, bright eyes yet a little sad with aging lines, mouth has a downward turn, skin not as firm. Then, in no uncertain terms the jolt of stiffness in my leg and the tremble of my hand reminds me that I have Parkinson’s.
“You have Parkinson’s disease. Good resources are to read about it, Michael J Fox website is good and I would like to refer you to Shands Movement disorder center,” said Dr.Isa (my neurologist).
“Oh ok,” I calmly said. “You realize that this is a progressive disease, every person progresses at a different pace and as of now there is no cure,” was his reply. “Yep ok,” I said with a smile….”I know.” There was quite a long silence in the room….”I realize this is a shock, read as much as you can, join a group and call anytime if you have any questions”, said Isa looking a tad curious about my lack emotion and questions. I smiled and said “nope, no questions , I figured as such.” With that my new normal begun…….I walked out with a smug face…..odds were that given my age I would not beat this “situation” but I was going to give it the fight of my life.
That was 3 years ago. Here I sit, 1.23am Sunday, my restless moving body decided that I had better things to do than sleep. I have learned to love these moments. These are the times I turn on the music and type…..words flood my mind…I type…..memories start surging….my amazing childhood growing up in the tribes of Africa, boarding school, my adventurous parents, travels, first love, current love, reconnecting loves, children, happy, sad…..As I type at this moment Shawn Mendes sings “understand” in my ears…his words….”am I asking all these questions for nothing…is there anyone there, I need to make a confession, I am a little scared….am I turning into someone else, I just really want to understand who I am. Change is good, changing is not a bad things, at the end of the day you are the same person”
Very powerful words and certainly describe my last three years.
I have chosen not to read and reread the progression possibilities nor have I joined a group. I have researched both and not liked the outcome of either. Call that coward…be that what it may…I choose to live in the moment and deal with the moment….its got me this far…for Gods sake, I have climbed three friggin mountains and start the next climb this coming Feb. I climb for a cause, I climb because I can, I climb because it gives me peace, I climb in hopes that just one person who is told “you have Parkinson’s” will instead be told “you have Parkinson’s, let me tell you about the mountains you can climb”. Everyone has there own mountains and my hope is that I, in some small way can help them enjoy the climb. My future climbs will be with the memory of 49 vibrant lives lost. They were taken in a atmosphere of hatred. I will take them above the clouds where there is a pulse of respect, unity and peace. They deserve that.
I am youthful, very fit, strong muscles, quick memory, full of fun, work full time in a high level job. Let me tell you how to celebrate everyday…..
First of all don’t make it about YOU. You cannot die from Parkinson’s, so why fret and be “poor me”. There are way to many far worse off than I….my life is privileged. I have the responsibility to give back and pass forward. I am very fortunate to work for Macy’s, a company who operates on a value of integrity always and give back to your community. I don’t do it for the recognition….the most fun part is when you see it happen and smile privately. I was very lucky to have been raised by my parents with the understanding that this is our privilege to live on this earth, to make it a better world. There should not be one child hungry, not one person abused and what’s with this black, white, christian, jew, gay , straight, anger out of control shooting crap….that’s what turns my stomach, time to stop folks….lets get this earth and its habitants back in order. Shame on me when I feel sorry for myself and my situation, there’s more important work to be done here. Get with it..have some sense of urgency.
Second and very important to my mind, which continually runs on high octane, thinking of ways to make things more efficient and effective. I work with amazing group of people who totally understand my situation and give me zero slack. We laugh together on those days that my meds are not as effective as they should be. No one cares that in the middle of a meeting I have to get up and start moving around. You see, moving stops me moving…..think about that for awhile……get it…….Parkinson’s a movement disorder. Yep, some days my right side will spasm and move uncontrollably or my right hand will shake or my swallow reflex is shallow or my speech will freeze mid sentence and tone will be soft or my right foot will curl in and I have no handwriting skills OR all of those will happen all at once. It is not unusual for me to say….”hey, you type while I dictate” (its very hard to type while your body is in total full movement, although most times typing calms my restless body down) or I just wait till my brain decides to give up and let me do the hell what I want….which is usually the case. Once again, you cannot die from Parkinson’s and as far as I am concerned you are not deemed stupid upon diagnosis……so carry on!!!! I am very proud of all those wonderful, bright, brilliant, enthusiastic associates and managers that I have had the privilege to mentor and promote. I hope my legacy is one of “she was one tough analyst, mentor and friend who loved a challenge and had a smirk on her face and twinkle in her eye every time she promoted someone.
Third….ok, so my body is in motion24/7 you would think I would hate working out….no, not so. I cant climb if I am not fit, so that’s a no brainer. The fact of the matter is…I firmly believe that surrounding yourself with positive people, I have a very small circle of friends, I actually love being on my own however, my friends are important to me and some know my vulnerabilities…yes I have those. Positive attitude, mental strength and exercise are vital components to living my new normal. I am very grateful that I love physical activities. This is my formula …..personal trainer Mike who works muscle strength 3 times a week……he has no mercy on me. As he says and does…”I am not training you as a person with Parkinson’s I’m training you as a athlete”…..no shit Mike, I am climbing a mountain not walking a rose garden…so you better train me as a athlete. 5am runs….2 mornings 2 miles, the 3rd a minimum of 5miles. There is nothing better than putting music in your ears, what gets me going is Eminem, Kid Rock….their true grit,… no question, strong words push me through the hard, almost give up stages. Enrique Iglesias puts the sexy in running and a wishful thinking on my mind, Blake Shelton puts a big fat smile on my face and Elton John eases me into my 2nd wind….shoulders back, eyes straight ahead, mind free, I own my thoughts, my present and my future….I am where I should be, I understand who I am, I am not holding on to the old me, I am not scared.
I swim whenever I can, I box at least twice a week and oh yea…..there’s this thing called nutrition…food..food..food. I know I need it and I do like it but I’m really not good at it. I do eat only healthy food however I am not a healthy eater, meaning, I don’t eat a lot for the amount of energy output….my input is something to be desired….it’s a work in progress and totally understand a very important part of slowing the progression of my situation.
Fourth….stay away from germs. As I have said, Parkinson’s won’t kill you however, it does put you at a disadvantage when you do get sick. When I get the flu or a cold I really really get sick. Because my rest and sleep is at a minimum my body finds it hard to fight bacteria or viruses thus, landing me in hospital several times. This all sounds daunting, trust me, I have very rarely been really, really sick in my entire life. I am fortunate to be one healthy human.
Hey, look….I am the first to admit, this disease sucks, it’s inconvenient, it’s painful, it’s something to NOT look forward to and you certainly do not want to take friends and family down that road with you and there is no cure….now that pisses me off no end. BUT…I am alive, I am in the best physical condition I’ve been in, I am able to help others…just writing that makes me happy. I have the best super heroes in the world…..Muhammad Ali, Michael J Fox, Bronwyn and Matthew. I am inspired by Shawn everyday, his story of fight, strength and integrity makes my soul pound. Kevin, his soft unspoken yet powerful message of hope for a diverse peaceful world. Lee, who always puts things into perspective …my new normal. Steve, my 5K buddy, Jen, Patti, Bonnie, Melissa, Peter, thank you. Earl….you have been through worse hell than I could ever go through yet you have always found the strength and love to pick up the pieces of me, put them back together and push me out the door.
Keep a social calendar, learn something new. Have your time alone, its important but Parkinson’s will tend to isolate you.I have always enjoyed my isolation, I am not one for idol chat, I prefer intelligent conversations…trust me i do love good old fun and love to laugh. I do make a point in making sure I keep my social connections.
I’ve left number 6 for last….its the best and I’m extremely grateful for.
Keep your sexy going….and in some cases get it back.
As I’ve said before I was diagnosed with Parkinson’s and not with stupid nor with you are not attractive nor not sexy. You can have Parkinson’s and be sexy…..I had lost the “feel” of sexy, I had lost the “how” out of sexy. Truth be told… the saying “if you don’t use it you loose it” is totally correct, Let me be clear….I have never been dowdy….for goodness sake I’ve always worn thongs and still do at 62, I’ve always dressed in latest fashion.. I love and appreciate couture, its creative art at its finest. red lipstick is my favorite, boots and heels are to die for. I’m not advocating that you get your slutty sexy…totally no!!!! What I am saying is that I understand and felt that Parkinson’s can make you embarrassed and quite often you cannot even lay in the arms of someone you love because your body keeps moving or freezes….it’s uncomfortable, at times painful….you have to move away……and yes, that makes you feel unsexy!!!! Get your nails done, have a Brazilian bikini wax, wear trendy clothes and let all you inhibitions go…..enjoy and experiment. But, but, but…..do this with someone your really love…it makes you feel even more sexy..hehe. Trust me on this topic.
Parkinson’s ……listen up!!!!! I’ve got one up on you yet…….I sorta kinda glad you came into my life, cause I can look at you and say “you are not winning, I am the poster 62 year old for kicking PD ass”. I will keep finding ways to ignore you, I will be there for those that are looking to kick your ass and in the end we will find a cure but in the meantime I will live every moment, in the moment,as I want, with a smirk on my face…..so take that and shove it …..