I have a little experiment for you. 

You'll need a wool blanket, a chilly pool, a change of clothes (with accessories), and if possible, access to a fabulous party. 

The first time can be a practice run, like that marathon you did a few years ago. The one where you wore the t-shirt and hat advertising that sports company to raise money for people with big problems, like an incurable disease. You shared the best photos of yourself looking svelte, next to your equally fit friends, arranged in a victory line. You are a winner and enjoy a good challenge. I know this, so I'm offering another challenge. Ready

1. Tie a hand behind your back. Preferably your non-dominant hand. If you want to continue the experiment, you can do it in two rounds and use your dominant hand next time. Make sure you have not eaten or slept, and try this during a time you have a million things on your mind for a more authentic effect. 

2. Stand on one foot in a loud and disorienting place, with everyone yelling over dueling music tracks on crackling speakers with nauseating feedback. Invite a dozen screeching kids in bumper cars drive in circles around you. Incredibly loud reverberation, and perilously close- these unpredictable savages! You know, just like a high school pep rally in the gymnasium. Someone is poking at the back of your neck and stepping on your feet, but you are expected to clap. 

3. Wrap yourself in a damp wool blanket with a change of clothing inside the blanket. Include jewelry and belts, shoes and your handbag or briefcase. 

4. Exit the pandemonium by rolling down a set of stairs. It's fine if you feel like screaming, because absolutely no one is paying attention. People have jobs, and stuff. 

5. At the bottom of this seemingly endless staircase, submerge yourself in the pool and attempt to change into the new outfit while remaining inside the blanket with your hand still tied behind your back, underwater. The water is freezing, so your body will shake a bit. 

6. Pop up for air and listen for clinking glasses and fabulous travel plans. They are all moving slowly around the party, yet appear blurry as the freezing water slows you down. Continue changing your clothing, but please try not to drown! Remember that this is just a game...for you. 

7. Revelers at the pool party see you thrashing about in the bitter water, and assume this means you are enjoying the party. They call your name and talk about what they are doing. You try to listen and stay engaged, but you are drowning and there is no lifeguard. Everyone is going home and you haven't even enjoyed the hors d'oeuvres. 

8. Drag yourself onto the side after you change clothing, and sigh yourself to sleep, waking five times in the night for no apparent reason. You may get four hours, if you're lucky

9. Get going before dawn because everything will take a little longer and you need to feel normal, or at least semi-productive. You'll be falling asleep by 2 PM. (Just a heads up.) Picture yourself moving through cement. That's pretty close to how Parkinson's feels on a bad day. Maybe today will be a good day, you never know! 

10. Usually this takes years, but in the interest of our game, we'll expedite your progress: you'll lose your sense of smell, taste, ability to digest and swallow properly, breathe or speak evenly, and your hand will close up whenever it likes while your foot drags. Your neck, back and general alignment will be so far off that you start to feel more pain than pleasure. Your sight may grow dim and your brain will process at a different speed. 

11. As you are thrashing about, you have to graciously accept the endless advice well-meaning folks at the party may offer. They tell you what you should do because they read a cure or had an Aunt who had the same thing. The wool blanket effect and the fact that you are now on PT (Parkie Time) aren't apparent to an untrained eye. "You look fine!", they insist. Just like you, they mean well. 

12. Repeat with your dominant side tethered. For an extra challenge, put a wad of cotton in your mouth and keep a glass balanced on your head. 

Someone asked what it's like to live with Parkinson's. Does this help explain things? Once I was just like you, and had big plans. Add a baffling array of bizarre side effects, shifting symptoms, anxiety, depression, and increasing doses of marginalization and misunderstandings from people who you mistook for 'forever friends', or friends of friends who can't distinguish symptoms of a disease from deliberate choices. Genetics loads the gun and environment pulls the trigger, baby! Isn't this a blast? Let's get ready for the next round of games, in cement. This is going to be...

Hey, where are you going? 

Fast forward to the BART train yesterday. Zombie nation has become a reality! Like rush hour traffic, Bay Area Rapid Transit certainly brings out the best in humanity. Passengers hypnotized by tiny glowing screens, sans eye contact, with earbuds securely in place, all following the universal mantra of 'ME FIRST' (or move out of the way!) The handicapped seats were occupied by people under 30ish attached to electronic devices. 

Louie CK captures it perfectly, and this is worth repeating. (I'll figure out how to use hyperlinks one of these days.) Here I am, getting coffee in California: 


I was the woman to your left in dark glasses (no crying on the train!), unsteady and vibrating because the my parkie meds refused to kick in. I do not want to have Parkinson's and it seemed no one wanted to be on that train, but all I needed was a seat. As the train filled, passengers got shuffled, and with less to hold onto of course the tremors increased. Instead of simply asking someone to move, I focused on slowing the breath in hopes the shaking would subside. A few random folks stared then looked away. No one offered a seat. Since many diseases don't present as a particular disability, I was reticent to insist anyone give up a seat- although this was the first time that I might have gnawed off a finger to get one. (Not your finger, mine.) 

I know enough about non-motor symptoms to realize everyone who appears able-bodied may not be healthy enough to stand for an hour on a moving train. My symptoms don't always show. I look perfectly fine most of the time and only my closest friends and family (many of whom live across the country) even know to ask if I need help. I do need help every day... with things that are ridiculously simple. Turns out the brain is kind of important, and mine is under attack

We share this world. Our parents taught us to consider others, hold doors, and offer seats. When in pain, we all become less generous. It is no big deal to someone who can stand to give up a seat- basic manners. Laptops, tablets, smartphones, radios, and listening devices too often trump consideration for others. Bad experiences on public transportation can cause us to deliberately ignore fellow passengers. We are overworked, underpaid, and if dismal attitudes are any indication... we are definitely underlaid. We crave connection, yet we ignore those in our immediate presence. 

The real problem is that no one is paying attention. 

What can we do? We can advocate for ourselves, and each other. Perhaps something along the lines of, "May I have a seat? I have Parkinson's and can't stand much longer," or asking someone directly if they wouldn't mind giving their seat to someone. Most people like to be helpful and happen to be kind. They have no idea some of us are moving through cement, or underwater in a wool blanket. By using your voice, you are advocating for all of us. We owe each other this genuine courtesy. If you can't do it for yourself, do it for awareness and the greater good. 

I spend the rest of that afternoon walking along buzzing streets passing hundreds of people from all over the world and deliberately made brief eye contact with anyone not staring into a screen. All three of us shared a smile as we passed one another. The Body Snatchers and Stepford Wives didn't get to everyone after all!

Remember when we used to talk to each other, in person? 

It's not as easy as it sounds to use your voice to ask for what you need, plainly and without blame. Although, when you are confined to a heavy wool blanket, underwater, your concerns about reputation or perceptions tend to fall away. You must survive for yourself and for your family. I used to be a whirlwind, capable of juggling copious amounts of whatever came my way. I always had seventeen things going on at once. Now I am lucky if I can make it to my kid's big game. Traffic soup is hard on people with neurologic disorders. 

There will be plenty of opportunities to practice asking for what you need. Prepare for the worst, but expect the best. If you are fortunate enough to have a partner who understands, you can have a chat about potential situations and make agreements in advance. Instead of allowing constant change to provoke greater anxiety, I'm learning to get more comfortable with uncertainty. In these hectic times, people prefer having solid schedules and making plans in advance, but close friends allow space for when my body says, "Nope. Not today!" 

"Once this was" - Seen on the street in San Francisco, where I used to live and move about in a healthy body. I was a dancer.

Would you like to dance underwater? 

Compassion is our key to survival. Aside from maintenance, (treatments, rest, healthy eating habits, meds and exercise) you can strive communicate better with those around you. Disease affects everyone nearby, not just the person suffering it's wrath. Those who matter will support you, but anyone who denies your new reality has to be let go.  As we've discussed, it isn't that they don't love you enough, it's more an issue of capacity. This is a painful realization when you counted on and trusted someone. Parkinson's should be reframed for what it is: a war, relentlessly dismantling each of us. It is not our fault. If someone you know is resentful or judgmental, you may suggest they hate on the disease, not the person

Some of us are handicapped by disease and others are handicapped by lack of compassion. You just experienced a glimpse of life with a brain disorder. By a certain age, we can easily recognize that not everyone has the same experience in this life, and how our template just doesn't fit others. Well done on the experiment, you finished first! Your ability to see 'how it feels' just expanded. Isn't this wool blanket itchy? You get to take it off and get out of the pool, you lucky dog! Next week we'll be running through cement. Doesn't that sound like fun? I'll bring the champagne!

By the way, the next time you need a seat, just ask.