Against the Wind

August 27, 2011

Among the ten or so current ideas I have for blog posts, is the issue of early-onset Alzheimer’s Disease.  It’s a tricky topic, and an unpleasant one for many people who have “lost” family members to this awful disease.  The reason it’s coming up today, is because of a New York Times article I read yesterday.

Source for this image is http://www.thenewagenda.net

I’m not a “sports person,” but that doesn’t matter in this case, because of my knowledge and experience in this subject.  Pat Summitt, the women’s basketball coach at the University of Tennessee, was recently diagnosed, at the age of 59, with the early-onset form of Alzheimer’s.

59 seems young, doesn’t it?  Well, the youngest person ever observed displaying symptoms of early-onset Alzheimer’s Disease was 29.  Yikes.  Early-onset AD, particularly the familial variety of the disease, appears to be caused by a genetic defect on chromosome 14, which has been widely researched, and defects on two other chromosomes, which can all be passed on to offspring.  In fact, there is a 50% chance that the child of a person who has one of these genetic defects will also have the defect.  Even scarier, there is a 100% chance that one with any of the three defects will develop the rare form of AD. You can get tested for this if you want to, which could be helpful in deciding the future of your family.

Alzheimer’s is a tough disease for anyone, for their families in particular.  What’s tougher, though, about early onset (I’ll just call it EO from now on) is that the people who are diagnosed with it would have had, on average, about 30 more years to live, and have children my age and younger.  They still have so much left to do.  This means that in some cases, family members deny the possibility of their parents (mostly mom) having AD because “no one in the family had it.”  Medicine wasn’t as advanced though back in those days, and scientists didn’t even have a name for the disease, not to mention that it wasn’t uncommon for people to pass away before they began exhibiting symptoms.

A diagnosis of EO basically means that you have two or three years left of being remotely able to live your life the way you want, and sometimes a person doesn’t even have that long.  EO progresses faster than late-onset Alzheimer’s disease (my grandmother had LO for ten years before she forgot anyone’s name) which means that even though the brain has finished its functional life at some point, the body, which is a healthy 55-65 year old body, lives on.

There’s a reason we call it “the long goodbye.”  Only when a person has lost the ability to eat, or forgets how to walk (sometimes after many years) and has a fall, does their body begin to shut down.  In my experience, EO is very frustrating for family members in this way, and the saddest part of it all is that many people feel, after only two years sometimes, that their loved one is already gone, and then the waiting begins.

I read a book last year called “Still Alice.”  It was about a 50 year old Harvard professor (told mostly from her perspective) who was diagnosed with EO.  It goes through the process of her disease and, in my opinion, it does an amazing job of painting the EO picture. Toward the end of the book it is clear that the once-intellectually-driven linguistics professor has gotten to a point where she is happy – content – eating ice cream and listening to street musicians perform (it sounds pretty good to me too).

My bottom line here, if I didn’t already make a point, is that things are shifting.  Things are changing in our world, and the dementia population is growing and becoming younger.  What this has meant for me, as a music therapist, is that my music repertoire is shifting too.  While the people on units I work in have normally been between the ages of 79 and 94 (making the early 1950s the absolute latest years most of my clients know songs from, and making Let Me Call You Sweetheart (1910) the most requested song), in the past two years, the number of 55 to 70-something year olds has increased, so the music has changed.  Despite the terrible reason for the change, I must say that it makes my job a bit more challenging and I’ve enjoyed learning “new” tunes.

Some “more recent” songs that younger patients and residents (or their families) have suggested in the past few years are:

The Wind Beneath my Wings – Bette Midler

Sweet Caroline – Neil Diamond

You’ve Got a Friend – James Taylor

Blowin’ in the Wind – Bob Dylan

Fun, Fun, Fun – The Beach Boys

Blue Velvet – Bobby Vinton

Tie a Yellow Ribbon ‘Round the Old Oak Tree – Tony Orlando and Dawn

Yesterday – The Beatles

Unforgettable – Nat King Cole

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No matter how much I love the old songs, it gets a bit old listening to myself sing “Down By The Old Mill Stream” over and over again.  The more I get requests for more current songs by folks with EO, however, the more terrified I am that I’ll be one of those unfortunate souls whose cognitive skills leave them early, and who wants so much to request that my music therapist play “Roll to Me” by Del Amitri, but can’t find the words.

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