Lewy Body Dementia (LBD), also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer's. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control). To learn more about the disease, please visit the Lewy Body Dementia Association site. In short, it is physically like Parkinson's (LBD and Parkinson's are under the same umbrella) as there are changes in posture, gait and balance but has the added fun (and I use that word sarcastically) of dementia. The worst part of this disease is the person is fully aware they are losing their ability to do the things they want to do, to think, to remember and to know their wife of almost 54 years and their only child.
No two people with LBD are the same. There is a saying, "if you’ve met one person with LBD, you've experienced one form of LBD." This is so true as this disease is not like many other diseases where there is a predictable pattern of experiences/behaviors. Living with and with someone with LBD is like living on a roller coaster, hence the image of a roller coaster on the blog. Over the course of a year, month, week, day and in some cases hour, this disease can take the person living with and those caring for them on all kinds of twists, loops, turns, sideways and upside down and leaving you feeling like you don't know which way is up.
While the reason these protein bodies form and create the disease are unknown, it has been linked to various chemicals such as Agent Orange. Daddy served in the USMC in Vietnam when he was 18 and was exposed to Agent Orange. Yep, 56 years later, he is still sacrificing for this country.
In case there is someone reading this who is caring for a loved with LBD or any other disease, I will share some gadgets and other items we have found to be helpful. We are blessed to have an amazing VA hospital here in Charleston, SC and over the last five years, I have learned to navigate the VA system and will also share what I have learned as it can be a bit overwhelming at first.
The purpose of this blog is really for me to have an avenue for better processing my thoughts and feelings as I go through this journey with Moma and Daddy (aka the 'rents). I tried therapy but that was so not my jam. I’m pretty sure at some point I will say things that will make people in my life mad or make me sound like a jerk but like I said this is my outlet for processing things. As much as I've grown to despise the COVID-19 saying "we're all in this together", it is true when it comes to living with Lewy. So who knows, maybe someone reading this is a daughter of Lewy or some other disease and they will be experiencing some of the same thoughts and feelings and realize they are not alone.
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