Saturday, March 28, 2009

Homework Assignment

When Judy left us (leaving our world a little less colorful by contrast) she gave us a homework assignment. We each drew a random name of one of the others, and were tasked with writing a paragraph about that person. Well, everyone has done that, and here are the results:

"Marian on this assignment (and Marian gets a gold star for turning hers in first):
Anyway, here is my "homework assignment". Turns out, my dog didn't eat it after all!
About My Friend Karen (by Marian)
I used to think that courage meant not being afraid. I used to think that strength meant not crying when your heart was breaking. Then I met Karen. She showed me that courage means going on even though you’re afraid, and strength means reaching out to others even though you’re crying. Karen has looked into the eyes of despair and rejected it. She has laughed through her tears and defied the odds. She has reached out with a strong hand to help others while her world was turning upside down. She is a wise woman and a joyful (and sometimes frightened) little girl all at the same time, and I’m so proud and happy to say that she is also my friend.
Love ya,
About my friend Sherri (by Judy)
I learned alot about my friend Sherri when she came to visit me in Tennessee in January, so this is a cumulative summary of some of her characteristics. Sherri is of course a writer, so she soaks up things about people without much outward interaction at first. And then I think she evaluates a person or situation with her heart and mind and interacts in a most sensitive manner. She may seem shy upon first meeting her, but then when she speaks what she says is very thoughtful and sincere. She is tentative about sharing much about herself at first, and she puts on the front of handling life with PD quite well, but I'm pretty sure that is because she puts all the hard life stuff in God's hands. Her faith is a strength much greater than her own because she has experienced God's strength in her life before and knows she can depend on it above all others.
While at her home I got to see her with the ones who make her most proud, her family, but I love the look on her face when she talks about and plays with her 'bright spot'...her one year old granddaughter. It is a very special bond they share! And I got to share for an afternoon planting and digging in the dirt with her--another one of her passions. And I learned, here is one way we are different....I like admiring the end result of it all...the lovely garden, and will gladly leave the diggin', sweating, and wondering if what I just planted will grow process to others like her! lol Sherri may look like she is too serious (PD masked facial look) but she can get zannie and silly just as fast as the rest of us!! And her KGB jokes are a riot! To me though, the most impressive characteristic and the trait I most admire in her is her compassionate heart. You immediately sense it, you know it by her words and actions, and in her writings as well. She is selfless, funny, and a wonderful person to know and call my friend.. Thanks Sherri for making my adventure so very special. 4 ever admiring your heart....judy
About my friend Judy (by Karen)
It was nearly two years ago Judy and I met online through a support forum known as Patients Like Me (PLM). She reached out to me through an instant message system they had at PLM. From there a friendship began to blossom. It would not take long before I would really learn exactly what Judy was all about…OK well maybe not exactly she just too unique of an individual for that! Judy has a heart of gold and a spirit of passion for God that stretches beyond the heavens. She has a sense of humor that is infectious especially when she starts to laugh and she also knows how to be not only a compassionate friend, but also giving.

I will never forget the time I came home from work in the afternoon; I was feeling not only emotionally beat up by Parkinson’s but also physically. I had been home on disability and had gone back to work, which was grueling every morning for me. One particular day stands out in my memory; I was too ill to continue my day at work and had to leave after only being at work a few hours. I called Judy on my cell phone en-route home in tears. I felt not only disappointed and betrayed by my body, but embarrassed to admit to my employer that I was having a hard time working a full day. After I had been home for a while my telephone rang; it was Judy on the other end giggling and telling me that when my front door bell rang to open it and sign the paper and please add a tip…I said "What???" she continued to giggle to the point she was in tears on the other end and gasping to catch her breath and then blurted out to me "what kind of pizza do you like??" Yep you guessed it the bighearted Tennessee wild woman ordered me lunch…all the way from Tennessee…I have never had anyone do that for me! Not only was I surprised but so was her credit card company when they called her concerned someone in CA had gotten a hold of her credit card and was using it!! Looking back upon the memory of that very day showed me the heart this gal has for her friends.

Last week Judy made a trip out to the west coast and Marian (another CA gal) and I were on the list of visits…we had a grand time with Judy, Sherri, Marian and myself…No one but Judy could preplan the fun she had in store for us…she went out to the car and returned with a bag filled with small cups of different colors of Play dough…giggled and said "OK everyone pick 3!" We laughed, we sculpted, it was great fun to see four women ranging in age from their 40’s and 50’s so young at heart, each intensely immersed in creating masterpieces! Judy you truly are a wonderful, energetic, vivacious woman…thank you for your friendship!

About my friend Jeanette (by Judy)
I really think I threw my friend in Washington state, Jeanette, a curve ball she never expected when I asked her if I could come and visit her! That's just the way she is ...unassuming the power of her friendship and the blessing of her attitude. If there was a bubbling- over joyous-friend award, she would get it! I so wish she could have come along on the rest of my adventure with me....she would have fit right in...lil bit serious...whole lot of fun and giggles. The other thing so special about Jeanette is how much she just loves people and children and animals. She finds something good in everyone and everything to be grateful to God about. I had the joy of attending her church with her on Sunday morning and it was just a great time of fellowship. Later that day we went on a ferry boat ride and talked Jeanette into coming to Tennessee to visit sometime in the near future. I'm holding her to that promise, no matter what! The thing I absolutely love about Jeanette is her laugh! It is so fun filled and she uses it alot. And she also has the best dead pan humor that is always got me grinning. So Jeanette is my joyful friend. Don't misunderstand, she has her days too when life gets hard, but it doesn't take her long to look and find a blessing to claim or something to laugh about in it all, and that's an amazing thing, I think! Lov ya kiddo...looking forward to you coming to see me in TN!

About My Friend, Marian (by Sherri)
She walked around the corner as we exited the hotel and I could tell it was Marian by her smile, which matched the one on her Daily Strength and Facebook profiles. We had never officially met, only through the exchange of emails and updates through the PD community.
Marian is quiet and shy but once we all met and exchanged greetings, it was as if we all knew each other forever. Marian makes you feel important and rarely talks about herself but instead asks about you. She has an extremely strong vocabulary, evidenced by her competitive spirit in a game of Cranium. So much so that we blew Judy and her team clear out of the water in that round. An avid reader of such novels such as Moby Dick, she focuses on the importance of its message and not necessarily the size of the fish or what the author chose to name such a massive fish.
If I could use one word to describe Marian, it would be 'charming'. I'm not sure why, except that is what came to mind. She is funny, witty, innocent in her own way - perhaps it's because she made an extraordinary ukulele snake charmer couple, complete with baby snakes, out of an ordinary lump of Play-Doh.
Whatever the reason, Marian is a warm and wonderful person who went from being an acquaintance over the internet into a warm and wonderful and wacky person I am honored to call 'friend'. God is good.
About 4 wild women I read about on Facebook by Jeanette (as described by phone to Judy) note: Jeanette knows all four of us online but had only met Judy in person (isn't she lucky?). For her assignment she was to pick some words or phrases to describe Judy, Sherri, Karen, and Marian from the pics on Facebook of Judy's trip:
Jeanette on Judy..."drop-dead gorgeous" (further evidence of her insane humor and need for new glasses!), courageous, uniter, joyful (gee, thanks J!--your check is in the mail, lol
Jeanette on Sherri--struggling (to stay awake??? she did drive awhile), deep, enduring, and a great friend (and Judy agrees!)
Jeanette on Karen--love her smile, infectous attitude, intense (as in Dr. Fernandez --but if she had witnessed the Cranium game she might change this had to be way to describe !)
Jeanette on Marian--looks like she gets along well (with PD and others) and Sparkles as well as great PlayDoh modeler.
Jeanette also mentioned that the two Facebook pics she liked best were of the coat on the octopus bush and on the Chessman statue! Octopus one the best. And she mentioned that she would have loved being a kid again and playing with the Play doh (she said when she ran a daycare she never got to play with it..just always cleaning it up!) And she liked the picture of the sign that said "Live it's the 2 minute warning". (I did too, Jeanette! see I told ya she was crazy--in the good kind of way! )
Thanks everyone for your thoughts...I hope our blog audiences like this!"

My personal note on all of this: these are totally incredible women, and each one of them is a hero to me. How about Wonder Woman, Super Girl, Bat Girl and ... uhh can't think of another one. Anyway, you get the idea.

Tuesday, March 24, 2009

What's So Funny?

Q: What’s so funny? A: Everything!

Judy and Sherri (co-authors of the Parkinson’s Journey blog; see my blog list on the right) came to visit me and Karen this weekend, and we had a ball! We stayed up late, we laughed, we played, we ate ice cream for breakfast (well some of us did ), we laughed some more. In fact, I laughed so much this weekend, it got me thinking about why we laugh. I have a theory that laughter is partially defiance. We laugh to dispel our fear of something, and when we’re not afraid, that thing has no power over us any more. What was it Frank Herbert said… “Fear is the mind-killer, fear is the little death”? Something like that. Well, laughter is the best way to chase fear away that I know of.

So there we were, 4 grown women, sitting around Karen’s kitchen table, playing with Play-doh, (I kid you not), playing charades, taking goofy pictures of each other, and basically laughing till we cried and our stomach muscles hurt. And what do we 4 have in common? Well, a few things, but mostly we share the experience of having an incurable, chronic, degenerative brain disease that is slowly crippling us and eating away at our quality of life. Not very funny. Scary, in fact. So, we laughed at it (and everything else!) and the fear disappeared; it was like when Harry Potter and his friends waved their magic wands and yelled “Ridikulus” at a truly terrifying bogart and it turned into something silly and disappeared.

So here I am, wearing the bright pink and lime green socks that Judy gave me, and a t-shirt that says "Will Work For Dopamine". I’m going to keep laughing, and never let anybody tell me I should be more serious. “Serious” gets me nowhere, but “silly” delivers me from fear.

Sunday, March 22, 2009

Coming Down From the "Middle-Age Crazy Tour"

I will post more on this later, but suffice to say I had a WONDERFUL time meeting Judy and Sherri, the c0-authors of the Parkinson's Journey blog, and spending time with them and with Karen. We laughed, we shopped, we played with play-dough, we ate ice cream, and when we said goodbye, we cried. What an amazing group of women they (we!) are!

Saturday, March 14, 2009

23andMe and other new developments

A lot of us have been sent invitations to join "23andMe", the private genetic evaluation business at a reduced price (usually $399, special deal $25!) for a limited time. This is the brainchild of Sergey Brin, the co-founder of Google, and a well-respected figure around here ("here" being the SF Bay Area). He has arranged a partnership with 23andMe to start the biggest online research project on Parkinson's Disease EVER!
I must admit, I was confused when I got the letter about this, even though the letter was sent by two very respectable entities; the Parkinson's Institute and the Michael J. Fox Foundation. I couldn't figure out what they really wanted and why I was being asked to pay even the reduced rate of $25.oo to basically participate in a research study. Now I know; "23andMe" is a private company, and Sergey Brin has donated a LOT of his own money to underwrite the cost of their services. What happens is, they send you a genetic testing kit (a saliva test). You spit in the tube and follow whatever directions are on the kit, then send it back. In about 10 weeks you get you get a complete detailed report on your genetic makeup. This report will tell you if you have any of the genes known to cause Parkinson's (only a very small percentage of Parkies do) and also whether you have any of the genes known to cause other serious conditions, such as cancer or Huntington's Disease. The report will also include information about your ancestry, which should be interesting for most people.
This information is invaluable for researchers, especially when combined with the surveys that you have to agree to participating in when you sign up for the service. The data that are mined from this could lead to spectacular discoveries about Parkinson's. Or not; who knows? I think it's worth a shot, myself.
The thing we have to ask ourselves is this: do I WANT to know all this information about my genetics? For myself, I have a family history of breast cancer; my mother had it, and so did her mother. If I have one of the infamous breast cancer gene mutations, what will I do with that information? I'm too much of an optimist to just have my breasts removed to prevent cancer; if they told me I had a 95% chance of getting cancer, I would assume that I would be in the 5% that didn't get it. So, I would probably simply worry about it. That's just me. On the other hand, suppose I found out I DIDN'T have any of those nasty mutated genes? That would really ease my mind.
Anyway, after weighing the pros and cons, I did go ahead and sign up for it. I really think that this will help the researchers find good therapies and possibly a cure that much faster, so it will be worth it to me. I do think, though, that everyone considering signing up for it should think carefully about how the results of the test might affect their lives first.
I will certainly share anything interesting that comes of all this.

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.