This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Sunday, April 28, 2013

It's Obvious I am NOT a Dr...

...but here's my take on Lewy Body Dementia.

Lewy Body dementia is a degenerative brain disease that deposits alpha synuclein plaques, also known as LewyBodies, in various places in the brain that destroy neurons causing impairment in thinking & coordination which leads to a whole lot of other issues.

I've tried to educate others as to what lewy is and what lewy does through this blog, hand out and spoken word. Yet when someone starts talking medical to me, I get lost in the language SO I began explaining it in terms I could understand.

Hubby has Lewy Body dementia. It is the second most common form of dementia after Alzheimer. It is a brain disease that has symptoms that look like Parkinsons where he shakes a lot, and some symptoms that look like Alzheimers when he has memory and/or thinking problems. One of the differences in Alzheimers and Lewy Body are the fluctuations lewy can do. You might even think the person is faking a problem because they seem so "normal" one time, "off" the next time, and back to "normal. 

So, imagine a highway.

 In alz, when the plaques and tangles interrupt the brain neurons trying to make a connection, the connection shuts down like a road block of quick sand. The neuron says, "Well we can't get past that" and it stops trying and eventually dies.

With Lewy, when the neurons hit a road block it keeps backing up and ramming to get through. The "off" happens while the neuron frantically tries to find a way through or around the neuron road block (lewy plaque) until it either accomplishes a detoured route, (normal) or has used up all of the options. Once it has no other options, it then dies. Probably from sheer exhaustion :/

The lewy delusions and hallucinations are like a house of mirrors and glass. In Hubby's case, most of the time he knows he is in the house of mirrors. There is more than one of certain things, things like me most of the time. Other things are distorted and confusing but, since he knows, he tells himself it's distortion or asks. This is a place I get to be also. I can see him but I can't get to him. There are occasions when he can't make the distinction. Those are the times he becomes convinced of what he sees and is sure he has found the way out. When it turns out not, he becomes agitated and angry.

I can't stop the progression. We've applied all of the slowing down we can and now our tires are worn to threads. I can only learn how to try make Hubby's life easier for him. It's a delicate balance and a LOT of trial and error in meds and action.
As easy as it can be to take his negative attitude and actions personally I MUST remind myself to keep my own self in check. I get testy and pouty and annoyed. When verbally pushed, I verbally push back. I'm not the perfect caregiver but I love deep, even if some days I don't like,  I do the best I can. I try not to wallow in the negative but I can get overwhelmed. I can shut down but I always regroup, stand up and continue going. I laugh and surround myself with others that laugh. I limit negative from outside sources. I offer support the way I want to receive it. I try to care for myself. So far both Hubby and I are doing as best we can. I contribute that to the very many prayers I say throughout the day. Prayers for him and for me. It's my prescription for our happiness.
Even though I'm not a Dr, I think it's working.


  1. What a ride Mr. Lewy takes us on! Sending warm and caring thoughts your way! I am right behind you on the road!


    1. Thank You MJ I'll keep alerting you to what's up ahead on this road as I can see it :)

  2. We seem to be walking similar paths although mine has had more "cultural" road blocks than yours with authorities and those claiming to be authorities causing more pain and suffering through their inabilty and often refusal to get to know Lewy Body Dementia, the disease, and the person/people whose lives it tears apart.

    I want more; I need more and I work to do more. The greatest help for me would be to find those who have travelled this road and reached farther "destinations". Understanding the journey is different for everyone, how about hearing from those who've moved into other "stages" or have seen LBD in other ways. Where are they? How can we get them to speak out, speak up?

    Lewy Body Dementia is an isolating journey and even within the LBD Association there's no real mentorship. Too much verbage and the discussion groups are too lengthy going off on many tangents and you can't find what you need when you need it. It has been a good resource and truly shines light where it is needed but it needs to be more focused in making LBD as common a cause to understand and focus on finding support as Cancer or Heart Disease.

    LBD robs us of time, Kathy. When it's most active and intrerruptive it steals precious moments and abilities not just from the victim but from those closest to them providing the love, support and care.

    The time to build awareness through showing LBD for what it is through many eyes is needed. I've started a blog and I'm determined to show how LBD can and does damage lives due to so many not seeing and some not wanting to see, the disease for what it is and all Dementias for what they are -- life altering for the indivdiual and for everyone.

    Thanks for sharing your experiences.

    1. Kathy and Donna,

      First, Kathy - love your descriptions and views of Lewy Body. I wish I could put it in words like you have. I'd like your permission to link your blog to mine.

      Donna, you have a very good point. There isn't much in the way of "stages". My husband is pretty far advanced - he can't walk anymore, feed himself and his speech has been garbled for over a year. He can still get out some words, but can't understand most of it. He was "diagnosed" in the spring of 2006 with Early Onset Alzheimer's at age 59. Since then I figured out why the treatment for Alz was not working on him. I had to CONVINCE the "experts" that it was LBD and NOT Alz. So frustrating.... anyway, I digress. Please let me know if I can answer any questions you may have.

    2. Donna,

      I too was searching for info on how to live day to day with Hubby's LBD. Finding little to none I chose to blog our own experiences as a path for others to see. Not everyone will experience the same things but perhaps our blogs, yours mine and those that are willing to share can give us a heads up for what could be.

      Keep talking, keep educating. Just today I was allowed an opportunity to share with a couple of women that attend the same gym I am a member of. We eat, sleep. breath lewy. We are it's eyes and ears. If you run into a roadblock, keep singing until it falls :)

      Please stay in touch :)

    3. Claudia,

      Yes please feel free to link to this blog. I'm still trying to compile the LBD blogs here also.
      The more we speak up the more we reach, even if it's just one at a time :)

      Thank you so much.

  3. Good work…unique site and interesting too… keep it up…looking forward for more updates..


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