dementia with lewy bodies

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I'm going through a rough patch

I am a caregiver for my dad who has dementia I was signed up for a 6 week caregiver course starting yesterday and I just could not go I could not shower I felt like I was going to be judged on what kind of a job I was doing with my dad I cancelled my Doctors appointment for today too I feel like I'm in a hole . #Anxiety #DementiaWithLewyBodies  #Depression #Caregiver

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How Lyme Disease and Dad's Dementia Made Me Strong

“You’re so strong,” people have said to me over the last several years. And you know what? For so much of that time, I didn’t believe them (and frankly, even today, on the really difficult days, it’s the greatest challenge to work past that feeling). I felt like a fraud. I felt like this two-faced liar. How can I be strong, I’d ask myself, when I cry myself to sleep some nights? How can I be strong when my heart aches day in and day out? How can I be strong when I feel like I’m crumbling into a million tiny pieces, being chipped away at bit by bit each day? It’s taken me many years to learn this fact: Strength manifests itself in a multitude of ways. Each person displays their strength differently. And beyond that, strength evolves… I mean, it has to! We are human, constantly experiencing new journeys in life (the good, the bad and the ugly), so it’s only natural that our strength lives on some sort of spectrum — never a spectrum of less to more, but simply a spectrum of here to there, neither that “here” nor that “there” being either better or worse. It’s highly personal. There is no one way to define “strength,” just as there is no one way to define “normal.” Sure, of course, we all have a general idea of what those terms mean and of what the dictionary tells us they should mean. However, it’s more complex than that… My chronic Lyme disease has been the greatest internal challenge I will face in life. My father’s Parkinson’s disease and Lewy body dementia has been the greatest external challenge I will face in life (please don’t misunderstand, both are “emotionally internal,” if you will, but I’m talking solely physicality here). And to be honest, each of these incredible challenges has pulled at so many strengths I didn’t even know I had. With my chronic Lyme, I’m learning (I say this in the present tense because there is never enough knowledge in the world, and each day I try to learn) that vulnerability is not a weakness but a strength. Sharing my story, my symptoms, my struggles has allowed more people into my life, in the grand sense, the sense that we have a deeper understanding of one another. This openness and vulnerability works hand-in-hand with my personal feelings governing my dad’s condition as well. That vulnerability, in both situations, has helped strengthen relationships and also form bonds with people in my life. There is no greater feeling than the meaningful connection between two souls. I’m also learning to know my body — in the spiritual sense. Though I have a long way to go, learning to connect my mind with my body has been the single most powerful transformation in my healing process over these past several years. It’s powerful knowing that, with my personal condition, my mind and my spirit have the ability to let a calm wash over my body, to help ease the tremendous anxiety I feel on a day when my symptoms are in full force. This calm doesn’t necessarily diminish the symptoms, but it strengthens my intentions and my will to put a smile on my face and make it a good day. By the same token, this spirituality has allowed me to discover more happiness, contentment, and love in coping with the overwhelming feelings surrounding Daddy’s disease. Not only with my condition, but also with my father’s, I have found that tremendous strength lies in my choices. No, I did not choose to be sick. No, I did not choose for my father to fall terminally ill. So, what choices do I have? The choice to say, “These are my cards. How are we gonna play them today, my friend?” That takes strength. That takes courage. That girl who felt like she was crumbling, who was aching, and who was crying so often, taught this girl today that strength comes in the power to choose… to make it a good day, despite the bad… That girl then, by the way, wasn’t weak. She was learning. And growing. And that in itself takes strength — giving yourself over to feel takes strength. And let’s be real, even today, a good, honest cry can be the most cathartic feeling in the world. But after that cry, I can choose to wallow (wrong choice for me) or I can choose to say, “OK, that sucked, but I feel better. Let’s do this thing!” I am never weak. I am strong. It just took a little self-exploration and discovery to realize that strength is not traditional or one-dimensional. And that feeling, whatever you feel right now, is preparing you for a great lesson — a great revelation. It all takes strength. From here to there. The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

Letter From Daughter to Dad With Parkinson's Disease and Dementia

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 The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines.

Robin Williams' Wife Talks About Dementia With Lewy Bodies Diagnosis

Robin Williams’ wife Susan Williams has given her first set of interviews since the beloved actor’s death. Williams spoke with People magazine and explained that only after her husband’s passing were doctors able to determine what was going on with his body and his brain. “It was not depression that killed Robin,” Williams told People. “Depression was one of let’s call it 50 symptoms and it was a small one.” Robin Williams was diagnosed with Parkinson’s disease in May 2014, but Susan Williams said it wasn’t until after the coroner’s report came out that doctors determined her husband had Dementia with Lewy bodies (DLB). DLB is a common neurological condition that is only possible to conclusively diagnose through a postmortem autopsy, according to The Alzheimer’s Association. It’s the third most common form of dementia after Alzheimer’s and vascular dementia, and it may cause hallucinations, impairment of motor function and symptoms similar to Parkinson’s. “Everyone did the very best they could,” Williams told ABC News. “This disease is like a sea monster with 50 tentacles of symptoms that show when they want. It’s chemical warfare in the brain. And we can’t find it until someone dies definitively. There is no cure.” When asked about her husband’s suicide, Williams said she didn’t “blame him one bit” for taking his life. She added that she was able to see the actor after emergency responders arrived at the couple’s home: “I got to pray with him and I got to tell him, ‘I forgive you 50 billion percent, with all my heart. You’re the bravest man I’ve ever known.’” Williams hopes her family’s struggles and findings can help others with DLB. “This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it,” she told People. “Because we didn’t know. He didn’t know.”