My Rx for Dementia

I’d like to put in a bottle what I am doing to fight my dementia for everyone facing what I’m facing.

On this blog, I’m counting down, in photos  and words, the 678 vinyl record albums I collected mainly in the 70s and 80s before CDs and digital took over. In doing so I am reconnecting with my past, and my memory of it. I’m finding forgotten memories. I’m rediscovering good (and bad) music.

And I’m loving it.

Every day is like Christmas to me. What is the next one to review? What surprise and memory will it bless me with. The discipline of writing connects me to my mind in a way beyond speech.

I’m doing this in addition to traditional drug therapy, on which I am   combining a carefully calculated  mix of Alzheimer’s and Parkinson’s medications. That’s because my disease, Lewy Body dementia has symptoms that resemble both degenerative brain diseases.

The problem is that Lewy Body, despite being the second leading cause of dementia after Alzheimer’s, is not well known. Early diagnosis is a key to getting on the right meds because some anti-psychotic medications, used in Alzheimer’s treatment, are contraindicated and dangerous to the Lewy Body patient.  There is no cure, and its cause is unknown.

I am better off than I was a year ago when I was diagnosed. I felt miserable. I felt like I was antsy all the time. My arm would unconsciously slide up my side in the so-called gunslinger mode, a classic Parkinsonian symptom. But I had also had insomnia and REM sleep disorder which caused me to act out dreams, sometimes thrashing, punching and kicking. Not so great when you’re sharing a bed. Those are classic Lewy Body dementia symptoms, including waking hallucinations.

I believe I’m feeling better now because of the medication. But I believe I may also be doing well because of the value that blogging has brought to my psyche. It’s given me something fun to do while keeping my dexterity refined through typing and my memory honed by remembering and writing about remembering.

Will the meds slowly quit working, as frequently happens? Will I be unable to type at some point? That ability already fluctuates. My writing is often more coherent than my speech, I know that. Just an honest observation. In live conversations with people, I often forget names or crash my train of thought. I have to thumb through the bins in my brain to find the right words.

It’s one of the reasons I came out publicly with my disease because I want people to know what’s going on when they talk to me and not be afraid to ask me how I’m doing living with dementia. “Very fine thank you,” I say. “And what’s your name again?”

My friends and colleagues and many others I don’t know so well know it’s no sweat that I can’t remember something right away.

So long before the dementia diagnosis I had this idea of counting my records down and selling them one-by-one on eBay. It was, to be honest, a good argument over the years to thwart the pressure by my wife, Catherine, to get rid of the precious vinyl. But as you are hearing it is becoming much bigger than that. It’s a treatment. And it is also a written legacy that my loved ones can read to get a dose of me after I’m gone. If they want that dose. My beautiful daughters, young women, Hannah, Emily and Claire, don’t seem too too interested in the blog now. (Whaddya mean  you don’t  want to read my 1000 word dissection of the Allman Brothers’ influence on Southern rock and jam bands?).

in the future, something may resonate (or not). But i would like to leave something where they can remember and know who i was before i become not who i am.

My records represent many hours perusing record bins and many quarters and dollars, usually bought used or as cut-outs. They range from R&B, classic rock, hard core country, punk, funk, soul, New Wave, comedy, classical, folk, Americana, reggae, alternative, and jazz, both old school and modern.

Since I started in September, I have done 64 record reviews in 67 posts. Some of those posts had no album reviews as they were about other things I’m trying to write about such as basketball, journalism, and Lewy Body dementia. Sometimes, especially if I have multiple records from the same artist, I review them in the same posts.

So I have 614 reviews to go, not counting new vinyl additions my family and friends are giving me in a loving gesture to add length to the reduction in my life (and its quality) that Lewy Body will try to make happen.

That’s because I have vowed to finish this blog out.

I’m loving it.

Counting down my 678 vinyl records before I die of brain disease.