Lewy Body Dementia

Join the Conversation on
Lewy Body Dementia
535 people
0 stories
20 posts
About Lewy Body Dementia
Explore Our Newsletters
What's New in Lewy Body Dementia

UK Easter Break Blues

So, here in the UK the kids have been off school for a 2 week break…. About 3 weeks AFTER they’d already had the half term break as Easter came early this year.

Just wondering if there are any other parents on here who reach the point of screaming internally when your day is literally “wake up, clean up, food for kids, make beds, put wash on, take wash out, make more bloody food, wash up again, put dry washing away… Aaaaand keep repeating” 😱😱

I’m bloody exhausted mentally & physically and currently trying to deal with a c-spine that doesn’t want to play ball, crazy muscle pains from scar tissue build up alongside menopause (thank god for HRT!), fibro, thyroid issues, pots, you name it, each year the list gets longer!! I suppose I’m ranting here but it pees me off when it only seems to be me who is capable of seeing that bins are overflowing, or making food, or wiping the bathroom around after use. Child 1 works from home, child 2 is 10 & starting high school in September. DH works from home and is currently in a UC flare up.

I’d started a diploma in diet & nutrition with biochemistry before the break as I need something just for me. I’ve asked numerous times for help with the house - specifically, you mess it up, you clean it up & ask the 10yr old to just keep her room tidy and clean it once a week. Same with the eldest & asked hubby to help with the heavy lifting…… Today I just get back from visiting my mum who has Lewy Body Dementia and is in a care home, to find that washing is still wet in the machine, 10yr old hasn’t actually moved anything to clean her room and the bathroom and kitchen bins are full. Literally screaming inside as I make the beds (had to do those as our elderly cat likes to sleep on them and isn’t always the cleanest bless her), wash up, empty bins and start prepping for dinner.

When I ask 10yr old if she can wash up and then finish her bedroom, I get the grumps and tears reaction!! Go to tumble drier only to find the lint trap is full and so is the condenser unit. I’m the unreasonable one for complaining that I’m the only person to check and clean between washes.

I am soooo bored and so painfully aware that my life is existing and I don’t want to reach my 70s and end up in a care home like my mum. I’m aware that as I reach my very late 40s my life is getting harder pain wise but also it’s slipping away from me. I miss my career, my social life and my health…. I want to scream “STOP I want to get off!” but I know I’m blessed to be a stay at home mum, even if it was the curve ball of ill health that made it possible. If you’ve made it this far in my rant, I apologise, I can’t say anything at home as I feel ungrateful as when I am off my legs Hubby does step up but it’s never the same and as soon as I’m up again, it’s going over everything that’s missed. Anyone else feel this mixture of anger, frustration, guilt & loss???? #EDS #Fibro #mental health #Guilt

3 reactions 4 comments

#Depression didn't kill Robin Williams

Part 1 of 2

Depression didn’t kill Robin Williams. Mental illness in general, alcohol, and drugs didn’t either. If you were like me when the news hit that Robin Williams had ended his own life, you were devastated. I grew up with Robin Williams’ career- from Mork and Mindy to Dead Poet’s Society to Aladdin to As Good as It Gets to Boulevard.  I watched it all.  I loved Robin. 

I’m not sure how to describe the feeling I got when watching him, but it was breathtaking.  Watching him pour himself into every character he made up and take himself out of every character he imitated was amazing.  He was truly a gift to the world of acting.

But it wasn’t just that gift that spoke to me.  There was an underlying something that I can’t quite articulate that drew me to him as someone who suffers from mental illness.  It was the moments just before the character kicked in.  The flashes in his eyes as he let himself go.  The reckless abandon that he had a hard time recovering from and allowing his own personality back into the room.  Robin was “on” all the time.  He had a hard time turning it off according to what I’ve read and seen since his death (and before).

It is common knowledge that Robin suffered from depression and was an addict in recovery and when he died that was the information that flew across the internet- depression had finally taken Robin Williams.  I remember thinking once that in my lifetime Robin Williams would die and it blew my mind.  I couldn’t imagine a life without him in the media or the world.  I couldn’t imagine him as a very old man, decrepit and slow.  I cried at the time about how I would bear witness to that aging and then that death.  Never did it occur to me it would happen so soon.  I often thought that when Robin passed, I would want to die too.

I have long suffered from depression and mental illness and suicidal ideation has been a part of my life if I can remember.  It was easier to think of dying with Robin than living without him.

When news hit the media that Robin had succumbed to mental illness, I was devastated and numb.  I wasn’t ready to go with him.  I’d told myself that I would go with him that I would be old enough and it would be ok.

But it happened so soon.  I wasn’t ready yet.  And that’s when news that Robin had been diagnosed with Parkinson’s disease hit the air waves.  Aha!

Well, now it made sense to me why he had taken his own life.

Parkinson’s attacked my grandmother, and I watched as she shook and turned into the opposite of the strong woman, I had grown up knowing her to be.  In that moment I could see how mental illness distorted Robin’s mind into thinking Parkinson’s had been a death sentence.  I

understood why he wouldn’t want to live that way and figured he had been hiding it and that fear for quite a while and had, in a moment of particularly poor thinking, given in.  It didn’t make the reality that Robin was gone any better, it just gave some perspective to the situation that made it sit that much easier.

Parkinson’s disease did not kill Robin Williams.  Robin didn’t have Parkinson’s.  That was a misdiagnosis.  Robin didn’t have Parkinson’s, Robin had Lewy Body Dementia.

Lewy Body Dementia killed Robin Williams.  Lewy Body Dementia is almost as if the brain is eating itself.  It is a progressive form of dementia that causes the person suffering from it to have symptoms very similar to Parkinson’s.   “Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).” – according to the Mayo Clinic.  This form of dementia includes a progressive decline in mental abilities, visual hallucinations, changes in alertness, Parkinson’s like symptoms (rigid muscles and tremors), confusion, dizziness, bowel issues, sleep difficulties, depression, and apathy.  Lewy Body dementia can make you aggressive and uncoordinated.  It usually causes death- on average about 8 years after onset, but it takes every bit of you with it before it does.  And this form of dementia can only be 100% diagnosed after death.

When Robin chose to end his life, he may have had several things on his mind.  He may have been confused by the way his body was reacting.  He may have been thinking he didn’t want to live with the way he felt.  He may have been thinking he was gone and didn’t want to live as a person that didn’t include his spark.  He may have wanted to save the world from what he was going through and the media circus that would follow him in his decline.  He may have had all those things in his mind, true, but more than likely, Robin wasn’t there.

Robin Williams was human, and he probably was mortified by how his body was acting and his inability to control it.  Doctors have now said that they are surprised he

8 reactions

#Depression didn't kill Robin Williams

Part 2 of 2

and his inability to control it. Doctors have now said that they are surprised he was able to still move around. Robin was shooting a film, he was moving, but he was forgetting his lines, and seen to be falling apart by others on set. Robin ended the horrible reality he was living with every day in a state of humanness and twisted thoughts… not mental illness.

Depression didn’t kill my favorite actor, Lewy Body Dementia did.

6 reactions

I’m new here!

Hi, my name is maggie0801. I’m new to The Mighty and look forward to sharing my story. I am caregiver for my husband who has lewy body dementia

#MightyTogether #Dementia

See full photo

My Earth Angel is holding on!#ServiceDog #PTSD #LewyBodyDementia #SystemicLupusErythematosus

Blessed to still have her with me a week after the vet told me to put her to sleep. She is holding on and kept comfortable with pain medication and plenty of the best food and so much luvins❤️🐾❤️

See full photo

Taking a break ? Maybe? Not sure how to.

I'm all alone sitting in my brother's condo in Chicago. No kids no kritters around. Instead of relaxing, my mind is a buzz with things that I should do since I'm feeling good. I really struggle with allowing myself to relax and do nothing when I'm not stuck in bed with a Fibromyalga flare. Years before I was diagnosed, I knew that something was wrong. The fatigue, pain and brain fog was taking a toll on me. Raising 3 boys and taking care of an alcoholic husband and then adding a mother with Lewy Body Dementia while working full time sucked the life out of me. It was like I was on the Titanic and had to choose who to save. The husband had to fend for himself. My brother eventually took over our mother's care and I left the job that I loved. The husband and mom have passed way. The boys are now young men, but I still am struggling with allowing myself to be a person with a chronic condition. I still have those voices in my head saying I am just a weener or lazy. Get up and do something, like clean or laundry. Even here where I have no laundry or chores to do. I feel anxious like I will be called out for not doing something. " Just Being" is hard for me. I keep reminding myself I am a spiritual being having a human experience. Right?!

1 comment