Shake, Rattle and Roll

Videotaping Reveals the Good, the Bad and the Ugly

If you've read one of my previous posts, you might assume that I am opposed to videotaping. On the contrary, under the right circumstances, I believe the benefits from videotaping can be positively exhilarating and downright motivating.

 

In coping with my Parkinson's body, I've taken yoga lessons from Paul and Carolyn Zeiger, for three years. I KNOW that I've made progress. I can do the downward dog and the bridge as well as the next gal. However when they showed me a video of me performing yoga poses a couple of weeks ago, there was no video of my starting point three years earlier to compare with the current video. I saw no progress. Absent any improvement, I was only able to see my body flaws and nitpicked and obsessed on them.

 

In coping with my Parkinson's voice, I've taken voice coaching from Mary Spremulli, creator of Voice Aerobics. She developed a method to help me quickly attain a stronger, better voice. Mary filmed me and gave me a copy of the videotape so that I could review it, and use it as inspiration for what is possible with my voice. You can view the video that was posted on You Tube at: http://www.youtube.com/watch?v=w-HfkQK4dnY

 

The video is a segment from the first session of voice coaching. The goals of the session are to identify the "best voice" I am capable of; to set a target; and to use a sound level meter for ongoing monitoring while performing specific voice exercise and during conversation.

 

I don't care that the whole world can see my voice and speech flaws in the video as long as they can also see that there is hope for us to speak with strong voices with Parkinson's.

 

For more information on Mary’s innovative methods of voice treatment, check out her article at: http://voiceaerobicsdvd.blogspot.com/2010/05/voice-speedometer-broken.html

I Still Prefer Italy

You've probably heard the Welcome to Holland story, which is applicable to those of us living with Parkinson's Disease. But in case you haven't, here's another version.

I still prefer Italy,

WELCOME TO HOLLAND

by Emily Perl Kingsley

Copyright 1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  

  

 

 

Happy 36th Wedding Anniversary

 

Happy 36th Wedding Anniversary

Kate and Tom were married on May 11, 1974

DBS: Would You Do It Again?

I wake up this morning filled with mixed emotions:

Excitement and dread

Serenity and anxiety

Fearlessness and fearfulness

Optimism and pessimism

Today is May 4, 2010 and the fifth anniversary of my Deep Brain Stimulation (DBS) surgery on May 4, 2005 (you can find out the not-so-gory details at Uneventful Brain Surgery).

I've learned these five lessons during the past five years (Okay, I’m a slow learner):

1. An experienced DBS programmer is just as important as an experienced DBS neurosurgeon. Programming may often take longer than you would like, but with patience and expert programming, good results may occur.

2. Create a rewarding new life even with Parkinson’s and DBS. Life can be meaningful despite the loss of employment and career.

3. Count your family and friends as among your greatest blessings. Express an attitude of gratitude for their ongoing support and assistance.

4. Strive to make your life as normal as possible by getting out of the house, socializing with friends, doing errands and enjoying life.

5. Remember that everyone with Parkinson’s and DBS has their unique symptoms, progression of disease, strengths, challenges and own way of coping. Just because they “look real good” on the outside doesn’t mean they feel the same on the inside.

Despite mixed emotions as I reminisce about the surgery five years ago, I learned lessons along the way. And in answer to that inevitable question of “Would you do it again?” my response is “Yes – absolutely.”