Chapter 7

Anecdotal evidence

Sure, Grandma smoked five packs of cigarettes a day, drank a bottle of whisky before breakfast, ate nothing but deep-fried lard, never got any exercise, was vastly overweight, and lived to be 112 years old. But “scientific data” is not the plural of “interesting anecdote” There are always anecdotes available to support any idea. But science needs proof before injecting a million people with a new drug. Or withdrawing the use of an existing treatment. And the story about Grandma is of interest to them, but by itself is not going to change their minds.

You are reading this because it is about Parkinson’s. I don’t think you are reading this site because you have back pain or a broken leg. It is because you have been grabbed by the sabre-tooth tiger which is now dragging you away to its cave to eat you. Fortunately you have your laptop with you and you are googling “Being eaten by tiger – what should I do?” And lucky for you, me and Darcey are here to tell you to put on Jimi Hendrix, LOUD. No tiger in the world can handle that.

I hope you can extract some key words from these anecdotes – some key concepts that will be useful for you in your own fight against the beast. Your anecdotes will be different from mine, but we can learn from each other, and substitute. Such as, where I say “Muddy Waters” you might say “Frank Sinatra” or “Ozzy Osbourne”. Where I say “shake your booty, baby” you might say, “May I have this waltz?” But neither of us can say, “Nothing.” Nothing does not cut it. “Nothing” is when the Parkinson’s Apathy leaves you lying in a heap, and the longer it holds you down, the harder it is going to be to get you up again.

So let us see if we can extract some key concepts from the rambling story of how it came about that I am writing to you. One key concept is something I simply have to order you to do. I can’t argue the point, I just have to state it as a command: play it LOUD. After that, you are on your own to find the Blues Advice and the Johnny Walker Wisdom in these anecdotes. As if your life depended on it. I know mine does.

Too soon old, too late smart

Key Words:

(1) Care about PD Apathy. It is the enemy’s neutron bomb. Make deliberate decisions to be very active. Apathy can’t handle your lust for life. That is why it hates you. This is your responsibility - not the responsibility of your doctor, your friends, your family. Of course they can help or hinder. But it is your gig. You are the only one who can feel the beast breathing down your neck as it prepares to finish you off. Kick its butt.

(2) Look around, and be open to serendipity, which is when you look for one thing and find something better, such as looking for a needle in a haystack and finding the farmer’s daughter instead. If someone opens a new door for you, take a chance, go see what is on the other side. The textbooks say that getting an incurable disease is a “life-changing event”. It isn’t really – you still have to take out the garbage and get some firewood. But it is a good excuse to check out some new directions, make a few new rules, stop being influenced by fools, and I even got one of those windshield stickers that allows me to park in the handicapped spots – all the best parking spots. At least I’ve got that going for me. Serendipity, luck and co-incidence appear to be accidental, or manna from heaven, but they actually rely of an infrastructure that required a huge amount of work by somebody. Like Darcey’s 16,000 blues tracks - a work of love, but also a work of work. Lots and lots of work.

You are either busy dying or you are busy living. Choose the one that is fun.

(3) Choose YOUR music. The Blues has become my choice, after starting out as Darcey’s choice for me based on a prescription for healing from John Lee Hooker, and I highly recommend it. And I am not just saying that to placate the Blues Police. The Blues has the range and the variety and the depth and the impact to fight Parkinson’s.

But you must choose the music that hits you. The music that touches your feelings. The music that is hard to get out of your head. The music that makes you want to dance, or march to war, or make love, or snap your fingers, tap your toes, and flap your flippers. The song they played at your wedding reception, or the CD the jerk took from you as part of the divorce. The song you played over and over when you were in high school, sweating over an impossible puppy love. Or the folk tune Grandma used to hum when she was baking bread.

And go find more music that catches your attention. Whatever turns you on, baby, whatever floats your boat, do your own thing in your own time. Whole albums from the same artist are sometimes repetitive: better to make your own compilations, your own playlists, of songs that mean something to you, songs that you wish you had written and performed. And playlists for different situations. Be greedy. Claim the right to play your music in your own home, every day. The kids may make gagging sounds, the neighbors may think you have finally snapped, but it is not their choice, because they are not the ones being eaten by a sabre-tooth tiger.

(4) Play it LOUD. A good stereo system, shaking up the joint. You need your brain to fall completely into the music. You need to be surrounded by sound. The music must drown out the nonsense in your head – the worries, the doubts, the resentments, the laundry list, the problems with other people, the tax forms, and all the chattering that goes on in your head. You have to clear that all away at least once a day, by blasting your favorite music. And when others complain (and they will) and they say “The music is so loud we can’t even think”, that is exactly what is intended. Your brain needs to stop thinking and have nothing else to do for an hour each day – nothing but re-trace the ancient pathways of music and dance, with no other calculations going on.

(5) Shake it up, baby. Move to the music. At first, even just a little bit. But every day, move some part of your body to the beat of the music. And then more and more. In the privacy of your own home, move freely, re-invent dancing, make it your own. Make whatever movements the music inspires you to make. Dance. Maybe you have not danced in 30 years. All the more reason to dance. Enjoy it. And tell people: the doctor recommends it. This website recommends it. Darcey says dance until your moccasins wear out. There is genuine evidence that dancing does a lot of good for a lot of PD’ers. And there is a genuine belief that the cure for the disease is in there somewhere. So dance. Dance and music may help find a cure.

(6) Visualize. Don’t be a stuck-up narrow-minded middle class boor about this. Yes, it is what teenagers do: play air guitar, pretend to be a rock star. Yes, some people will tell you that you look ridiculous. So throw them out of the audience. Don’t let them buy a ticket to see your show. As with Karaoke, you get to sing. But also, you can dance around pretending to play the guitar, the drums, the sax, the piano. Visualize as intensely as you can that you are the one making this music; this is your band and you know how to play all the instruments, so you can do the guitar solo AND the piano solo AND the drum solo. Make yourself a star in your own living room. Know your songs. Imagine the audience – a huge crowd sometimes, or a small group, or just one person, to whom you offer flowers and love songs. The more you can get into the music, the more powerful it will be in unblocking and re-wiring the rusted out circuits in your brain.

Cecil is Hank Williams. I am so many different blues musicians, I can’t remember all my names. My guitar solos are legendary. And I have heard rumours on the internet - just rumours mind you – that we have a Shania Twain. Can we plan a duet with Hank Williams? That would be hot.

And you, who are you on stage? Frank Sinatra? Keith Richards? Tommy Dorsey? Amadeus Mozart? The choices are endless. So choose. Even singing silently in your head as you walk down the street, make it into an event your brain will remember. The day Edith Piaf sang on Main Street.

Non, je ne regrette rien, rien de rien….

Sabre-tooth tigers hate that kind of stuff.

(7) Find the Zone. The Zone is where you fall into the music, and it lifts you up and carries you away, and you feel free, and the pain is gone, and the universe is beautiful. No, this is not hippie talk or tree-hugging. The Zone is where the music comes up through the floor and into your toes and up your legs, and it sways your hips and raises your arms and flows out the tips of your fingers and you could dance all night. The Zone is where you see that it has been really worthwhile to be alive, and a lot of your complaints seem to dissolve. When you experience the Zone, bookmark it, remember what it feels like, and how you got there, and go there again, on a regular basis, to refresh yourself, and wash off the dust of the day in pure mountain water. You cannot live in the Zone, but you can go there often to find renewal. Some days you are just too tired, or distracted, and you cannot find the Zone. That’s okay. But don’t forget to go there. You need to get recharged. The Zone is that state of bliss, or contentment, or joy, or peacefulness, or enthusiasm, or creativity, that you have been to before, but the hectic pace and the emotional harshness of modern life cause you to forget to return to that special place, the place where your perfect suffering seems less important, where you feel renewed and free. For musicians, the Zone is when you are playing your instrument, and the music takes over – your fingers do the walking, and it is as if the instrument is playing you.

(8) Ask the question. How come some people who cannot walk can dance? Eh? Whassup with that? Ask people, ask doctors, ask scientists. Expect glib answers or put-downs, because you are challenging their view of how things work. But ask anyway, because the question will spread around from person to person, and at some point someone will figure out how to cure Parkinson’s. Asking the question makes them realize that the evidence is right before their eyes. And the more often the medical industry hears this question being asked, from all sides, the sooner they will realize that it is not just a few anecdotes from a few people. Parkinson's attacks different people in different ways, making it confusing to deal with, making it hard to see the patterns of the wounds. But it is the same beast. That' s the pattern. So kill the beast.

(9) Forgot to mention. Play it LOUD.

(10) Place your own Key Words here. It’s your disease. Make your plan.

Coming soon: another chapter, with the latest research.

Meanwhile, play the Blues. LOUD.

See ya’ later.

One more anecdote:

There is a story from several thousand years ago, some guy walking around in the dusty streets of some town in the Middle East, and he comes across a beggar sitting on a mattress, a cripple begging for charity. And he says, “Take up thy bed and walk.” And to everyone’s amazement, the cripple takes up his bed and walks.

I always figured that was one of those metaphorical stories that is supposed to mean something poetic, or it was a story from ancient people who did not distinguish between scientific fact and magic. Or it was just made up to pretend that the guru had supernatural powers.

But now I found out that it happens all the time.

A woman, in a wheelchair, unable to walk without falling down, unable to hold a spoon to eat, unable to care for herself…. And the music comes on, and she gets up from her wheelchair, and she dances. She dances like a teenager. As long as the music plays.

Let’s make the music play for the rest of her life. Take up thy bed and dance.

Blackberry bush. Sören Dawson.