Walk or Talk

I cringed when I heard someone say, “You can walk or talk with DBS.” DBS referred to Deep Brain Stimulation surgery for Parkinson’s Disease (PD). I wondered if it was a cruel joke, making light of PD and such serious brain surgery.

Perhaps I’m greedy, but I’d prefer to walk and talk with DBS. So does Pam Gehrts.

Pam is too humble to tell her story, but generously gave me permission to share it with you. Pam doesn’t consider herself a PD hero because “we're all going through the same thing” on parallel PD paths. However, I personally don’t believe that the number of PD heroes is limited but is infinite. We are all trying to make a difference in this world, fighting the good fight, while living with this debilitating disease.

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Pam’s Story

“I’ve had Parkinson’s Disease (PD) for sixteen years – since age 35. I’m now 51 years old. Needless to say, I’m a “young on-setter” (Young Onset Parkinson Disease - YOPD). Due to PD, I was forced to retire from my career as an urban planner about ten years ago. When my PD symptoms began, I had two young children, ages 7 and 3, and I had just started my own urban planning consulting firm. I had the credentials (a Master’s Degree) and extensive work experience to be on my way to the “good life” – then PD hit and everything changed.

For the first five years, I was in denial. I didn’t take any PD drugs and persevered in spite of this insidious disease. Naively, I thought no one noticed my tremors and slow movement. Finally, everything caught up with me, and I started taking the PD drug Sinemet. Sinemet got me through the next four years but there are horrible side effects to this drug - dreaded “dyskinesias” (uncontrollable body movements). From that point on I went down hill fast. I had extreme pain from dystonia (muscle spasms and rigidity) in my legs. I lost over 40 pounds from the constant and violent dyskinestic movements.

In spite of my loving family and supportive husband, the daily physical pain from PD was unbearable and at age 48, life was not worth living anymore.

Deep Brain Stimulation (DBS)

On December 22, 2003, I had bilateral Deep Brain Stimulation (DBS) surgery at the University of California in San Francisco. During this 11-hour brain surgery, two pacemakers were implanted in my chest and wires were run under my skin, up my neck into to holes in my skull.

Although DBS was not a cure, it gave me back much of my life. I no longer have the unbearable leg pain and the dyskinesias are gone. I still have mobility issues with walking and balance, but in the scheme of things, these problems are a small price to pay for the temporary relief from the terrible physical pain and disability of PD.

But alas, no PD treatment is without its side effects. Due to the DBS, I now have slurred and delayed speech. I’ve given up ordering Chinese food over the phone or calling motels to make reservations. I usually get hung up on because they think I’m drunk. (I seem to have the most trouble being understood by nonnative speakers). “Getting the words out” is an exhausting experience because my lips are so tight over my teeth. By the end of the day, I feel tired, frustrated and misunderstood. I tried conventional and LSVT (Lee Silverman Voice Therapy) speech therapy. But, voice volume is not my problem – my problem lies with the DBS stimulating the area of the brain that coordinates the muscles that control speech. I know this is true because when I turn off my DBS my normal speech returns in several hours. Unfortunately, the PD symptoms also return and I must turn on the DBS again.

Before my surgery, I had been homebound for several years and was visited on a weekly basis by a wonderful volunteer from the Friendly Visitor’s Program. Once I had my DBS surgery, I no longer fit the program’s criteria and I ‘graduated’. During my pre-DBS years of physical pain and debilitation, I always said that, “If I can ever function again as a person without extreme pain and disability, I want to volunteer my time and share 'the lessons' that I have learned.” My wish came true and I learned about a wonderful disability awareness group called A Touch of Understanding (www.touchofunderstanding.org) started by Leslie DeDora.

A Touch of Understanding (ATOU)

ATOU’s talented and compassionate volunteers go into Sacramento-area schools and share the message that disabled people are just like everyone else. Disabled people like to have friends, they like to go places, they have family and pets, and most importantly, WE have feelings and souls. The kids hear the message that by choosing to be kind to all people – even those with disabilities- the world is a better place for everyone.

The three-hour ATOU program consists of two parts – in one part, the kids are introduced to a hands-on activities which allow them “to walk in the shoes” of a disabled person. There is the mirror station (which replicates the experience of having a learning disability); the Braille station where kids learn how to write their names in Braille; the prosthetic station; the wheelchair station, and the white cane station. The second part of the program consists of disabled speakers sharing their stories. Some of the speakers were born with their disability and others became disabled due to an accident or a disease.

ATOU has given me the opportunity to share my story with the kids – YEAH, my wish has come true! I have always found the kids to be empathetic, curious and supportive. After my talk, it is so rewarding to see the warmth and the twinkle in the kid’s eyes that clearly conveys, “Ah...now I understand …”

Although I have been an ATOU volunteer for almost three years, it has become increasingly difficult because of my speech and voice difficulties. For the past two years, due to DBS-related speech problems, I have been unable to be a speaker for this program. However, on February 23, 2007, I turned off my DBS so I could present "my story" to twenty-nine sixth graders. I have never turned off my DBS before as it was too scary. I turned off my DBS at 8:30 AM and spoke to the students from 9:45 AM to 10:15 AM. My speech was clear and it got clearer as the day progressed. I had to turn the DBS back on at 3:30 PM due to the return of debilitating PD symptoms. Within an hour of turning my DBS on, my speech reverted back to slurring with the tight lips and throat. This was a very interesting DBS/speech experiment.

I touched one little girl so much during my presentation that she cried. She left the room to compose herself and after the speakers finished and we asked for questions, she said, "It's not a question, it's a comment. I want to thank you all for coming. You are all my heroes." The teacher then told us that during the time she went out of the classroom to compose herself, this sixth grade girl committed to becoming a neurosurgeon when she grows up.

Because of my ongoing speech and voice difficulties, I recently consulted with the same neurosurgeon who performed my first DBS surgery. He has agreed to perform a second DBS surgery on April 10, 2007. He hopes to move the electrodes to a place in the brain that allows me to speak and doesn’t compromise my mobility.”

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Although Pam doesn’t consider herself a hero, I consider her one. I look forward to her walking and talking with ease and spreading her message of hope and inspiration.

Comments

[Steven Gulie]

I recently underwent DBS surgery and had similar difficulties, but I can now speak and move normally. Please tell Pam that her DBS is either not optimally placed or not optimally programmed. Please also tell her she can join the Yahoo group DBSsurgery. She can get answers and suppor there. Has she tried Requip at night for the leg cramps? She's suffering bravely, but let's help her suffer a bit less.

[Heather Puckett]

Just wanted to say thanks to Pam for allowing Kate to share your story on her blog! I noticed that your second surgery is scheduled for next week. I, along with the ladies that work with me, will commit to praying for you (for an incredible recovery) and your neurosurgeon (for success in improving speech). I just think it never hurts to have prayer when you're facing brain surgery!

[Meg]

Hi Pam:
I am a friend of Kate. I have mild CP. I have had a few surgeries recently to decrease the spasticity in my left arm. Although the first surgery was not as successful as the second - I kept a positive outlook. Facing surgery is never fun, if you keep a smiling face and think positive everything will work out. I will pray that things go smoothly and your recovery goes well. ~Meg

[Janet daves]

hey pam ,
i am 51 also and had pd or since 91. I am in the boat your in but the dbs hsnt help that much just wanted to let you know i feel your pain