My Walk with Lewy

I am here and then I'm not I understand and then I'm lost. I am up and then I'm down I smile and then I frown. I never know who I will be I only know it's no longer me. My new friend Lewy is quite a handful - even on good days! While there are so many things I really grapple with on a daily basis with this disease, fluctuations (or severe changes) are some of the most difficult.  These fluctuations may occur at any time, which make trying to deal with them incredibly difficult.  I do not know when they're going to happen, or for how long, or in what form they will take.  For me, these fluctuations are both physical and cognitive and can occur day to day, week to week, or minute to minute.  The cognitive fluctuations I face are  things like lack of concentration, confusion, slow or delayed responses and reactions, inability to find words, decision making, impulse control, and task management. Anything dealing with executive functioning.  The physical fl...

​ This is my second attempt at this. I spent a few days writing my last entry and, thanks to Lewy, I ended up losing the whole thing. Well, as my old boss used to say, "That's an indicator." lol So here goes take #2... I started this blog last year to try to capture my journey with my new friend - and nemesis - Lewy Body Dementia. Primarily I started this to share what I'm going through with my family and friends, and to  inform others about LBD, which is the second most common form of dementia of which no one's ever heard. But I also wanted to leave a legacy for my 3 year old grandson, Theo, to look back on someday so that he would know there was more to his Bumpa than just dementia and the face he will end up seeing and the decline he will watch me experience as he gets older and this disease inevitably progresses.  I want to thank everyone, including my few but loyal and loving fans (who woulda thunk!), for following along with me. If you like this I would appr...