Mom’s LBD

A month ago I didn’t know what a Lewy Body was, now I realize that Lewy has been an uninvited and unwelcome guest in my house for years.

LBD is an umbrella term.  It covers “Parkinson’s disease dementia” and “dementia with Lewy bodies”.  It accounts for 20% of all dementia cases in the US, and it is very different from Alzheimers in extremely important ways.

I don’t like the term “dementia”, I prefer “disease”.  Lewy Body Disease.  Dementia, to me, is just a symptom of the disease and the term has negative connotations for people my mom’s age.

Apparently mom has been carrying Lewy around for a while and gone undiagnosed.  The initial symptoms she had – stiff muscles and muscular pain, stumbling gait and a tendency to fall – were attributed to arthritis.  But the original symptom may go way back to 1998 – a ‘TIA’ that left no damage.    The most telling, now that I look back at it, was her reaction to an Oxybutynin patch the doctor put her on.  She ended up in a near coma in the hospital with all the doctors scratching their heads and going so far as to do a spinal tap.  When they took off the patch, she woke up – and the doctors were still scratching their heads.

There are many more symptoms, too numerous to mention here (here’s a list), but all explained away by arthritis, sensitivity to certain drugs, the normal aging process, arthritis.  I even thought her strange ideas about me having two houses or about her having two bedrooms and two beds were just unusual dreams that she had difficulty shaking off – the impacts of age.

But then a few things happened.  First, mom, who was taking physical therapy to attempt to strengthen her legs and arms, started experiencing terrible headaches along with having trouble with her left arm – she is left-handed – and struggling with eating.  Her hand could not get any utensil to her mouth fast enough to keep the food from falling off before she got it there.  It would take her hours to eat anything that wasn’t “finger food”.  The PT folks recommended stopping her therapy until we figured out where the headaches were coming from.  First, we thought it was the arthritis in her neck and we went to a spinal specialist who recommended facet injections to see if we could eliminate the sideways slump of her head and the headaches along with it.  Then we went to a neurologist who recommended memantine for the headaches and for mom’s intermittent memory issues.  We held off on starting the memantine until after the injections.  In the meantime we took her to the shoulder specialist who had replaced her right shoulder.  She took one look at her x-ray and her symptoms and said there was nothing wrong with her shoulder – that we should go back to the neurologist.  The facet injections didn’t seem to help at all and, on top of it all, after the very mild anesthetic for the injections, she was extremely lethargic and weak.  And the follow-up visit with the spine doctor resulted in another recommendation to go back to the neurologist.

So, while waiting to get into the neurologist, we started the memantine.  I had been giving the injections a chance first before mixing in something else – and when I looked up the drug before starting her on it, I found information about LBD, which it is sometimes used to treat, and when I explored the symptoms, I found our little uninvited visitor Lewy.  And all of mom’s symptoms were listed, including the strange duplication of my house, her bedroom, and sometimes, of me.  This unusual delusion is called “reduplicative paramnesia” and mom has it.

Of course, in a rage of grief and anger and fear, I burnt up the internet researching, printing, capturing links, reading.  (The links I found are listed under LBD on my Home page.)  As of right now, we are waiting for the official diagnosis, but we got in to see mom’s primary care physician did agree and she ordered some blood tests, a brain MRI, and other tests looking for infection or other possible causes of delirium, just to eliminate everything before we see the neurologist in late January.

This journal is a record of our journey, together, through this disease, with a few side trips out into something resembling real life.    Hopefully if someone else is seeing symptoms in their loved one or is dealing with LBD, they may find something here of help – or have something helpful to offer here.

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