How many times have you had a chuckle over the bad acting in the “I’ve fallen and I can’t get up” commercial? I know I have had a few laughs while watching it. Perhaps it was a protective reaction since none of us like to face what might be a real possibility if we live long enough.

Monday morning at 3:00 a.m., that commercial became reality for me. It was echoing in my head as I lay on the cold, hard tile floor of the bathroom. Never in my life had I felt so lonely, so full of hopelessness and despair. I had gotten out of bed to use the bathroom and next thing I know, I lost my balance and my head hit the tile floor with a resounding thud. As I lay there, I broke out into a cold sweat, was nauseous and knew I was bleeding from the head but I couldn’t move. After a while, I dragged myself to get back into bed, trying to decide if I should call 911.

Since the bleeding stopped, my vision was OK and I was no longer dizzy, I chose not to call for help. The next day my cousin, one of the most knowledgeable nurses I have ever known, came over and checked me out. I have said before, I will always be lonely, but I will never be alone since I have such caring and loving people in my life.

I believe I am OK, however, I also believe this is a wake-up call for me regarding my health. The time has come for me to accept that I cannot fight Parkinson’s disease any longer on my own without medications.  My hope is that the medications will alleviate some of my symptoms such as lack of motivation and depression so I can focus more on exercise, which I firmly believe is the best way to fight the progression and symptoms of this disease.

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Firsts. Firsts hold a special meaning in everyone’s life. Firsts have special memories. Be it your first medal, your first job or your first love. A year back she got her first. Her first long write-up. And nothing could be more special.

Her first had memories, her first had emotions, her first had love, her first had ardor and her first had “him.”

A year back nothing changed, but nothing remained the same. The man she adored, she loved, left her, forever. It’s been a year the grandchild in her still misses her grandfather. He had Parkinson’s disease. A disease she wished no one ever struggled with. It was hard to see, that man, who was independent, who raised his daughter like a mother, who managed both house and work after his wife passed away early, struggled like this. In such times you think, no matter how advanced science and medicine is, we humans will always have limitations. With time his memory faded, his communication became weak, he was debilitated. He wouldn’t recognize people, people would not understand what he spoke. But, never did a time come when he did not recognize her and never did she not understand what he spoke. Even in that state his second question to her would be “How are you?” without a fail. He would laugh, giggle, crack a joke when she would call or meet him. Such was their love.

Death of a loved one is a life-changing event. She thought nothing would be the same, ever. As time passed, she got back to work, she found pieces of herself coming back together. Eventually each day looked just like it used to be before.

Life got back on track. 

Sitting under the moonlit sky that day, she wondered, something somewhere was not right, something was not the same. What had changed? Everything was the same. Her work, her relationships, people around, daily chores, beautiful moments and hardships; all were the same. They all existed and existed just like before.

Everything was normal but deep down everything was different. Nothing was the same. Work appreciations were not accompanied by his pat on her back. Relationships missed his lessons. People around reminded her of him. Daily chores were incomplete without talking to him. Beautiful moments had an emptiness. Hardships stumbled without his support.

Life got back on track but the journey wasn’t swift like before.

It would be a year but it felt like ages. He is missed today as much as he was missed on the first day of his departure. And he is loved today as much as he loved her when he took her in his arms for the first time.

Today, she loved him even more, she adored even more and she spoke about him even more. In his memories she found solace. In his way of life she found grace. In his lessons she found strength.

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

Happy Birthday Grandpa!

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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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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.

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