Thank you, to the daughters of Kasey Kasem. Their situation has highlighted LBD and now it's receiving some press!
http://www.nbcnews.com/health/health-news/casey-kasems-little-known-dementia-heartbreaking-docs-say-n104576
I'm truly grateful. Why? I'll tell you.
Today, I took Mom in to see her doctor for a check up, and to get some topical cream for her hands (she broke out yesterday - probably from the flowers in her room, or some such allergic reaction). Her doctor questioned my demand for a neurological referral.
"Why does she need to see a neurologist?"
"To determine where we are with her LBD."
"Huh? What's LBD?"
Now, mind you, it is relatively new, and not everyone knows. But this was a shocker! I had believed that when Mom moved to Portland all her medical records and files transported with her. Little did I realize - the meds were on target, everything pointed to people understanding....or maybe they were just following what they were told in the beginning?
"Lewy Body Dementia." This was followed by a brief description of the affliction, and how it wasn't Alzheimer's - which was what she had believed.
She was shocked. I was shocked. I believe she was embarrassed. But, I told her I needed someone who could see her, on Mom's insurance, who understood and was literate in LBD. I believe she understood - We'll find out shortly.
Later, I was speaking with the person who runs the cottages where Mom lives - and even he was uninformed. So, I schooled him - We had a conversation which was informative to both of us, and I shared the link to the Lewy Body Dementia Support Page, on Google+. This was quite affirming, knowing that people are interested and willing to find out more in order to serve their populations well.
Now, as flummoxed as I am, I need to remember that this is all new - not only to myself, but to most of you reading this. I was simply at a loss as to how even the term hadn't been heard before. The good news is that people are now learning about it, whether through celebrities who have been diagnosed, or through blogs such as this - it is now more relevant than ever to help educate myself and as many others as possible.
I had had another topic to discuss today, but I will probably put it off until tomorrow - about more symptoms, factors, and treatments for some aspects of the dementia - such as RLS, and EDS, and how the patients are affected by these (I'll let you figure out the abbreviations to keep your mind stimulated and working well!)
http://www.nbcnews.com/health/health-news/casey-kasems-little-known-dementia-heartbreaking-docs-say-n104576
I'm truly grateful. Why? I'll tell you.
Mom and Nadya in 2012
"Why does she need to see a neurologist?"
"To determine where we are with her LBD."
"Huh? What's LBD?"
Now, mind you, it is relatively new, and not everyone knows. But this was a shocker! I had believed that when Mom moved to Portland all her medical records and files transported with her. Little did I realize - the meds were on target, everything pointed to people understanding....or maybe they were just following what they were told in the beginning?
"Lewy Body Dementia." This was followed by a brief description of the affliction, and how it wasn't Alzheimer's - which was what she had believed.
She was shocked. I was shocked. I believe she was embarrassed. But, I told her I needed someone who could see her, on Mom's insurance, who understood and was literate in LBD. I believe she understood - We'll find out shortly.
a much younger Mom - probably in Victoria, BC (doesn't she look a little like the Queen?)
Now, as flummoxed as I am, I need to remember that this is all new - not only to myself, but to most of you reading this. I was simply at a loss as to how even the term hadn't been heard before. The good news is that people are now learning about it, whether through celebrities who have been diagnosed, or through blogs such as this - it is now more relevant than ever to help educate myself and as many others as possible.
I had had another topic to discuss today, but I will probably put it off until tomorrow - about more symptoms, factors, and treatments for some aspects of the dementia - such as RLS, and EDS, and how the patients are affected by these (I'll let you figure out the abbreviations to keep your mind stimulated and working well!)
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