Businesswoman with to go coffee looking in purse at cafe.

In November of 2015, I was diagnosed with Parkinson’s disease (PD). I had told my primary care doctor  I was having problems writing. She referred me to a neurologist who, after some movement tests, told me I had PD.

Now other strange things that had been occurring in my body seemed to add further fuel to that diagnosis. I was having problems cutting my salad with the fork in my left hand. My flip flop sandals and clogs would not stay on my left foot when climbing steps. Flossing my teeth and washing my hair using my left hand are now challenging to say the least. From someone who used to type 60 words a minute with no errors, I now hunt and peck on the keyboard. My balance, flexibility and fluidity of movement, which used to be excellent from all my years of dance is failing. Swallowing sometimes is difficult. When I roll over in bed at night, sometimes it is so arduous, I wish I had a forklift to help me. Putting items into a bag or finding credit cards and money in my wallet confound me at times.

Although they are constant reminders I have a progressive, non-curable disease, these simple tasks I can no longer do with ease, things I have always taken for granted, are just daily aggravations and annoyances. Luckily I was a problem solver for most of my career so this skill comes in handy now. Most people look at me and say I look fine and nothing has changed.

However, there are two symptoms no one sees that really affect the quality of my life the most.

The first is the slowness of movement: it takes me forever to get dressed or to make
something to eat. Putting together a salad seems to take an eternity. Needless to say, I don’t eat much.

The second symptom and the most life-impacting is the extreme fatigue. This is a fatigue that cannot be diminished by rest or sleep. I wake up after a sound night’s sleep totally exhausted. Since I am so tired, being motivated to exercise no longer exists for me.
To bike 10 miles now (this used to be a warm up for me) takes me almost an hour, and I am wiped out after it. Most days, I will just lay in bed for hours in the afternoon since I am so exhausted after I have forced myself to exercise in the morning.

If it were not for the discipline and muscle memory I developed from years of dance and exercise, I might be in a far worse off situation. Since I have such bad side effects from the prescribed medications, I must rely on continued movement and exercise to help me battle this disease.

So, one day, if you see someone moving slow and you are in a hurry and starting to get annoyed since this person is holding up the line, that person might be someone with PD trying to find a credit card in their wallet. Try to have a little more patience and compassion.

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Image via Thinkstock.

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On Saturday, I woke up to the very sad news of Muhammad Ali’s passing. Once again the world has lost a hero, one of far too many this year. Ali was one of the world’s greatest boxers and men. He fought for human rights. He fought for equality. He fought for peace. Then, he had, in my opinion, the greatest fight of his life. He fought Parkinson’s.

As I watched the many videos documenting his life this morning I shed a tear for him. In fact, I shed many. Why? I cannot say I was his biggest fan, though of course I admired his achievements. I live in the U.K., I’m too young to have witnessed the legend in action. I didn’t see how he set the boxing world ablaze while simultaneously campaigning for his beliefs. I didn’t know quite how great he was. But today I learned, and I cried for him.

Today I felt a closeness with Ali. I noted how he was in his prime when his disease reared its ugly head. How it robbed him of being able to box, in many ways of his whole identity. I learned how he wed his wife and built their family after already becoming sick. I saw more of what I already knew, that he didn’t let his illness define him. That he continued to fight it right up until the end. That Ali loved life and lived it to the highest level he possibly could. In many ways I drew parallels with my own life. The loss of my original goals. Starting a new path. Meeting and marrying my husband as a disabled woman. Of course I’m no hero like him, but in some ways I felt I understood him. I felt my battles and his weren’t all too dissimilar.

Thank you, Muhammad Ali. Thank you for showing me and I’m sure many others that though disease can strip us of our health, we control our own dignity. Thank you for showing this world people are more than their color, religion or ability. You saw life from both sides, the invincible boxer and the disabled man. But you let none of it define you. You was still invincible. You remained and will forever be the world’s greatest. You never gave up on yourself.  Thank you for showing me I need to continue to strive to be the greatest I can be too. Rest well.

Lead photo by Unknown – [1] Dutch National Archives, The Hague, Fotocollectie Algemeen Nederlands Persbureau (ANEFO), 1945-1989 bekijk toegang 2.24.01.04 Bestanddeelnummer 924-3060, CC BY-SA 3.0 nl, https://commons.wikimedia.org/w/index.php?curid=37191915

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Dear Dad,

I’m writing you this letter to tell you what I’ve learned — what you’ve taught me. The powerful stuff, the stuff that resonates deeply and entirely. Some of it I know was intentional, while another aspect of it I know wasn’t. You didn’t ask to get sick or to be on hospice at 53 years young. Parkinson’s disease and Lewy body dementia began taking your life away from you nine years ago. Yet, you’re still hanging on. Your body has deteriorated to practically just skin and bones, you’ve lost all control of that body and the ability to function as any seemingly healthy individual should. I’m not sure if you know who I am, but I do know that you sometimes burst into the biggest grin when you hear my obnoxious, cackling laugh (I’m talking shaking the windows, shaking the doors, get-everyone-ear-plugs-stat laugh… you know the one) — and that is everything to me. Maybe that’s why you’re holding on, because you know we’re still here… I don’t know…

What I do know, however, is that I think about you every day, and while, yes, many of those moments fill me with sadness and longing, I’ve been teaching myself to reflect peacefully, happily and contently. Don’t get me wrong — even in those sad moments, love never ceases, but I have found there is a difference — a difference, at least, in my personal perception of how that love feels.

As I’ve been on a journey the last several weeks to find inner peace with myself, work with my own chronic illness and all that comes with it, learn to cope better with stress, honor and trust myself and my intentions, and to find happiness with where I am presently, I’ve gained some perspective. Love shadowed with sadness presents itself negatively — like love shadowed with anger, regret, heartbreak… you name it. There’s always some kind of negative connotation associated with that love. And I’ve realized, Daddy, that I don’t want there to be any kind of negative energy surrounding my memory of you. You bring warmth to my heart and a feeling of calmness to my mind and soul. It’s those feelings, all that good love, that I want to hold onto forever.

Sure, I may be crying as I write this… because it’s powerful. This insane path you, Mom, Lauren and I found ourselves on in 2007 is just that… insane. It has been the farthest thing from fair, just, or any rational or “normal” existence we hoped to live. But with that, your love has kept me afloat. And Dad, that is the most potent, influential, palpable, touching, beautiful, flawlessly incredible lesson you taught me. And it sounds so simple and obvious — love.

It’s something I’d forgotten, grieving you for all those years, watching you deteriorate in front of my eyes. It’s often easy to forget the good stuff. Over the past several years, I feel as if I’ve spent more time reflecting on the bad stuff, the icky times, the awful times (I wonder why that is?). But today, Daddy, I choose love over everything. I choose to remember that dorky ear-to-ear grin that crinkled your eyes, your tender, warm bear hugs, the silent yet wonderfully expressive look of adoration, support and pride on your face when I’d walk out at the end of a performance. Love, Dad, has been the greatest gift you’ve given me, and the greatest lesson you’ve taught me; really, the greatest gift and lesson we can all give to each other. Because with love should come respect, support, trust, encouragement, compassion and adventure (and boy, did we have our fill of that! River rafting, camping, traveling…) — things we all need to get through the day.

Positivity, too, follows love. The good stuff. And though it can be very difficult at times (challenging, in fact, to the nth degree), I’ve made a promise to myself, and now to you in this letter, to continue growing in this positive light and to spread the love you’ve given so very much of — the love I have been blessed to receive. The gratitude I have for you, Dad, is unending. Pure, wholesome gratitude.

Your love literally created my being and shaped me into the woman I am today. I feel strong because of you, I feel empowered because I have your love coursing through my body and soul. I will continue to smile for you, I will continue to laugh for you, I will continue to love with you in mind.

You are an exemplary man and a gift. And I’m honored to be your daughter.

I love you the most,

Your Maddie Claire Boo-Boo Bear

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Today I drove my friend to cataract surgery. We had a good chuckle as we are getting to that stage of our lives.

We are not that old, but in times past, we used to drive together to dance classes. Now we take each other to doctor’s appointments. Even funnier was when she was finished and sitting in recovery with an IV, since my fine motor skills are failing, I was fumbling trying to find her sunglasses in her purse.

These chuckles I had today continue the path and major turning point for me that was started last week with my physical therapist (PT). During the PT session, I had the first true “belly laugh” since my soul mate of over 33 years, Steve, took his own life in March of 2015.

I was laying on the floor trying to roll over to the right at the PT’s request, and I couldn’t figure out which way was to the right. Then the PT, who was next to me on my right side, started whistling, and in a sing-song voice say: “I’m over here.” I thought this was the funniest thing; the absurdity of the simplest  task he was asking me to do, something most of us can do with ease, and it was confounding me.

I was laughing so hard at myself, I had tears in my eyes and I started to drool which made me laugh even harder as that is another symptom of a progressive disease I was diagnosed with in November of 2015; Parkinson’s Disease (PD).

I say “diagnosed with PD” as two neurologists have told me that. There is no definitive test for this disease, no cure and it worsens over time. One neurologist told me if you take one of the approved medications for PD and your symptoms go away, that will confirm the diagnosis. However, I do have symptoms consistent with the disease — slow motion movement, lack of motivation, poor balance (for me) and failing fine motor and cognitive skills. But, these could also be symptoms of depression, age or a combination of age and depression.

I find it so ironic that someone who loved movement and practiced it my entire adult  life (through dance and exercise) has now been diagnosed with a movement disorder. This is a good news/bad news scenario. On one hand, I believe it has prepared me to battle what I am dealing with, on the other hand, since I am so in tune with my body and how it moves from so many years of dance and training, I am much more aware of what I am losing.

The other irony I see is the medical community’s approach to treating PD and how that personally impacts me. The standard approach is to improve the quality of life and mask the symptoms by prescribing medications, very powerful medications that can have very unpleasant side effects. Sometimes these medications can cause the symptoms the drug is trying to alleviate.

This is a déjà vu for me in what Steve went through for his mental illness. Drugs are a treatment option for mental illness, many to choose from, all with potentially serious side effects. Steve was getting weary of the medications he was taking for his illness as they would lose their efficacy over time.

Doctors would either change Steve’s medication, increase the dosage and/or add another drug to improve the chances of the first drug having a better outcome or to address the side effects caused by that drug. Plus, it could take weeks before it is know if the medication will work, and if it doesn’t, one needs to be “weaned” off the drug, only to start the vicious cycle all over again with a new med.

This all seems to be a similar path for those on the PD medication journey.

Steve’s difficult experiences taking medications to help him with his mental illness is still fresh in my mind and I have been resistant to starting that path for my medical condition.

However, I am finding it more difficult to deal with my symptoms (symptoms and progression of PD are unique to each individual). How can I explain why I can’t cut my salad or wash my hair like I used to? How do I make myself move faster getting dressed in the morning? Why is it so overwhelming to look at a basket of laundry and think it will take me hours to fold the clothes in it? Why can’t I stretch and do intense exercise like I used to? Why can’t I hold a few marbles in my hand without them falling through my fingers?

I consider myself lucky my symptoms are not that bad compared to what they could be, but, living life in the slow, uncoordinated lane is taking its toll on me. Two months ago, I decided to try a PD med prescribed by the neurologist. It took two weeks to find out it didn’t help my symptoms at all and made me feel worse (weak, shaky and dizzy). So, off that med and on to the next one. This time, it was only one day on the medication and I became so sick, (weakness, dizziness, vomiting, pounding headache) that I  decided slowness and all other symptoms I was experiencing may not be such a bad thing.

What is my plan now? No more meds for me at this point in time. The doctor has another drug prescription ready and waiting for me, but the horrible side effects I experienced with the last medication are still fresh in my mind .

Instead, I will try to keep my sense of humor and laugh more at myself. Acceptance and gratitude need more focus in my life. My best friend since kindergarten has always said: “If everyone put all their problems in one basket, we would all take our own problems back.” My life could be a lot worse and I do have a lot to be thankful for.

For most of my life, I thought I had always stopped to smell the roses, but perhaps the challenges I have recently been dealt in life are meant to slow me down even more to smell those roses.

Slow is the new fast.

leap cropped

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“Well done for not giving up.”

It was a throwaway comment from someone I’ve never met on a Facebook page for people doing the London Marathon in aid of Parkinson’s UK.

She probably thought it was a positive, supportive, encouraging message of admiration. I found it patronizing and presumptuous. Other people’s attitudes can be so much more disabling than disability.

I was diagnosed with Parkinson’s three years ago, at the age of 50.

For good measure, entirely unrelated, I have another degenerative, progressive neurological condition, Charcot-Marie-Tooth.

Every minute of every day, in everything I do, I am compromised, disadvantaged, struggling with physical inability, tremors, weakness, greatly reduced mobility and dexterity, insomnia and chronic fatigue. I can’t run anymore, and my walking is pretty terrible, too. I no longer do things I used to love: hike, play golf, ski, jog, cycle. I worry about losing my body. And my mind. I have lost a lot, and it hurts.

When it was revealed that Robin Williams was at one point diagnosed with Parkinson’s, there were lots of online comments along the lines of “I’d do the same thing if I got that.”

As though only a perfect life will do.

As though at the first sign of trouble, the first bad hand, we quit the game.

As though for all its struggles, pain, suffering and misery, life is not also full of wonder, beauty, power and love.

As though someone who is much the same the day after a diagnosis as the day before should suddenly give up. Or be applauded for not giving up.

To. Hell. With. That.

Yes, there have been fleeting moments when I have thought of giving up, it’s true. I have no judgment for people who make that terrible, lonely final choice, only love.

Yes, I am angry and sad.

But sometimes, too, I feel so very happy… and alive.

Sometimes, with a little help from friends, family, colleagues, therapists and a whole lot of luck, people can emerge from their darkest hours, accept their vulnerability and mortality, and discover their true strength.

Disease, I have come to realize, can be healing. Like any hard knock, it can divest you of pretense. I believe it is a middle-fingered salute to vanity, narcissistic armor and polite conversations about the weather. Parkinson’s has been a wake-up call for me. It is a harsh, unforgiving teacher, but its lesson is profound and spiritual: live an active, existential, engaged and connected life. The time to experience, to enjoy, to live and to love is now. Right now.

A month from today, I am doing the London Marathon.

The idea came from my 8-year-old daughter, Annie. We were watching the London Marathon last April and I was telling her how I ran it in 1991 but crashed and burned after 20 miles. I always wished I’d finished the race, or had another go while I was physically able.

“Do it next year,” she said. “You can just walk the whole thing.”

Oh, yeah. Why didn’t I think of that? (Antoine de Saint-Exupéry said: “Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them.”)

So for the first hour or so I’ll be in the Marathon. For the rest of the day, and probably the next day too, I’ll just be a bloke with a stick, hobbling and shuffling along the streets of London. I’ll be stopping off frequently at pubs and cafes along the way. It will take me two days, maybe three (I will nip home each night to sleep in my own bed). I will be joined along the way by friends and family. Even our dog Daisy might come along for some of the route. Forget all that panting and sweating and blistering and chafed nipples — this is going to be a 26.2-mile celebration!

I’m raising money for Parkinson’s UK and CMT UK. But really I am doing it for me.

Give up? Why? I’ve only just started the journey.

A drawing of a man and a dog walking past the finish line of the 2016 London Marathon

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A son is blessed with all the love, caress and favoritism. A grandson is pampered, adored and showered with even more love. 

He also loved, cared, pampered, adored his grandchild with all the favoritism in this world. 

With pride and joy he would say, “She is my granddaughter!” Not a son, not a grandson but a granddaughter. And yes, he loved her with all biasedness, with all favoritism and with all partiality. 

He made her believe she could do a lot more than she thought she could. He was the first to tell her that she would succeed with flying colors. He taught her the importance of creativity in life. He was the first one to show her how creative one could be. He inculcated his granddaughter with the love of art. 

He personified elegance and grace. An erudite man with immense knowledge, he never shied away from learning. He wrote, he read, he designed, he created masterpieces and yea, he cooked… and cooked exotic dishes. He was the first one to show her how someone could be elegant yet strong, graceful yet firm, charming yet naive. 

grandfather holding baby granddaughter

He loved her like no one did. He taught her like a father, he pampered like a mother and he supported her like a best friend. 

Today she stands tall, so proud to be his granddaughter and even more lucky that he was her grandfather. 

Shattered in his absence, lost in his memories, she writes and writes. Aware that he is reading all that she writes. After all, writing was his favorite medium of expression. 

He was, is and will always be her favorite man in this whole wide world. 

Real People. Real Stories.

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