Monday, November 11, 2013

The Lewy Body Dementia Association WebSite

There is little information available about our disease.  WEBMD does a fairly good job giving the basics, but there is no other place to find first hand information that the LBD association site.  Not only do they give good, up to date , information.  But the offer a place to communicate between care givers and also those of us effected by LBD.  I encourage everyone impacted by this disease to check out this site.

They also provide information on the most recent developments in research on this disease.  It has always amazed me that LBD is the second most diagnosed form of Dementia yet no one ever heard of it.  I have dealt with doctors that do not know what LBD is!  So I believe those of us who are impacted by LBD should get the word out also.  

I would like to see more networking within the LBD community.  More workshops, more local support groups, and more one on one support between LBD patients and caregivers.  Something like the Alcoholics Anonymous program.  Why, because someone newly diagnosed with LBD needs to talk to someone who has had the disease for a while.  We need first had answers and support from someone who knows what is going to happen.   That type of first hand knowledge will go a long way to mitigate fear and stress.

I seem to spend much of my time trying to figure out why something is happening to me.  Yes, I know it is caused by the disease.  But what stage am I in?  And yes, I understand I am getting worse, but, is the latest change expected?  Do most LBD sufferers have tis issue?  My neurologist is of little help.  My psychiatrist is better equipped to deal with questions, but I still do not get the answers I need.  There is the LBD patient I see at the local rec center.   He and I trade issues and understanding and I find my infrequent conversations with him my best help.

So, check out the LBD association web site and then, get the word out.  And thanks for your comments.  The information I get from each of you is precious medicine to me.  I get information that lets me know I am "Normal" for having LBD!  

1 comment:

  1. Hi there, just me again. I am sitting here with my dad and mom as I type this. I have been away for a month and I do notice a very slight decline in my dads mobility. Although he exercises everyday he seems to be not as "steady" as he was last month. Do you have issues with mobility? Do you have good days & bad days? It seems my dad has more good days then bad ones which gives me much relief. Today my dad told me that when the day comes that my mom can no longer care for him, we are to put him into a nursing home. It broke my heart to hear him say that but I know that we, as his family, will do anything and everything possible to keep him at home, comfortable and safe. His tremors in his left hand have progressed to the point that it is a steady tremor...the only way he can stop it is if he holds it with his other hand. I am so thankful you write your blog, it gives us so much information.
    God Bless