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.