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  • MindMate Team

What it is like to have Lewy Body Dementia: Update (Guest Blog Post)

Lewy Body Dementia is a little know disease that second only to Alzheimer's for frequency in the dementia world.  But, as more is being learned, the connection between Lewy Bodies and all other dementia's and Parkinson's is being drawn.

That being said, it took the death of Robin Williams to bring the mention of Lewy Body Dementia to the forefront.  Not even the death of the perennial Top 40 Disc Jockey, Cassey Kasum brought Lewy Body Dementia any notoriety.

All of us with Lewy Body Dementia (LBD) suffer from depression, anxiety, fear, and anger, caused b the unknown of our disease.  Some of us, like Robin Williams, cannot deal with those issues and choose to commit suicide.  Other, for reasons I will not speculate on, can stand our ground and make the best of a bad situation.   Many times, various doctors that I visit ask me if I am suicidal or homicidal.  I always answer no to the first and no, I like women, to the second!

You have to see the humor in that!

But, that does not mean I am immune to the stress of LBD.   For instance, I feel like a prisoner because I have no independence!  I cannot drive.  I have no bank account, no credit card I can use without my wife seeing what I am doing, and no time alone.   I cannot even manage my own medicines!  I am not complaining.  I am merely stating the facts.  Heck, I need my wife to take me to get a haircut.  I have not been that dependent on another person since I was 16 year old.  Besides all the horrors of LBD, i.e. Hallucinations, lost memory, stability issues, wet pants, getting lost, repeating the same story, drooling, aspiration, sexual dysfunction, constipation, depression, anxiety, and other issues I forget, the loss of my manhood, my virility and vitality, and ,my independence is the most frustrating and embarrassing issues of this disease.  I am not the man I used to be as my wife often tells me.  I have lost most of my body strength.  My arms and legs have atrophied and the skin hangs on y arms and chest.  Lewy Body is robbing me, day by day, of who I was.  And who I am becoming, I do not like!  I suspect Robin Williams saw who he would become and did not like the prospect.  Again, just my uninformed opinion. As I have said, the most frustration, emasculating, impact of LBD is that it has reduced me to a dependent, prisoner, of my keepers.   My wife could give me any pills and I would take them.   She is in charge of me.  I do not determine where we go what we do, or who we do it with.  Now, my wife tries very hard to include me in decisions.  But, that is more for my emotional well being than any need for my input.  And, if I disagree with her decision, direction or plans, I am quietly over ruled or ignored.  To be fair, when I was in charge, I did things much the same way. I know; "What goes around comes around!"  I guess I never thought I would be dependent!  Heck, I always thought I would die on active duty!  But now I am dependent on the kindness of my wife.  Lucky she is a wonderful, loving, caring, wife!  But, all that niceness cannot erase the sting of my loss of manhood and independence.  She knows that, and continues to be gentle with me. So, what is it like to have LBD?  Terrible.  But, it is the place I am now and I need to be happy where I am.  And as tough as that is, I am trying to be happy.  That is all I can do.  Try!

Thank you Silverfox, ​for this very important and honest blog post!


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