The experience of A Touch of Understanding is greatly enhanced by the dedication of our speakers who have disabilities.  These individuals travel to attend presentations to give students a glimpse into the lives of people with disabilities.  They help them understand that people with disabilities are people first.  Many of the students comment, "We may be different on the outside, but we are all the same on the inside."

Please scroll down to meet some of our incredible volunteers who share their insight and experiences.  I think you will agree, they are excellent role models for our students.  Along with learning about disabilities, participants also learn about determination, perseverance and character.  One student said, "After this presentation, I feel like I can do anything!"  How empowering!

The mission of the program is what drew me to A Touch of Understanding.  I wanted to be a part of a program that would help people to better understand the lives of people who have disabilities.

I live with a chronic pain condition called fibromyalgia, which leaves me dealing with disabling pain and fatigue.  In high school, I used a wheelchair to get around.  Because of that, I was enrolled in an adaptive P.E. class my sophomore year.  This was the first time I had met anyone with a disability.  I got to know my classmates and they quickly became my friends.  Their positive attitudes and perseverance in the face of incredible challenges inspired me.  I learned so much from them. 

 The most eye opening experience for me occurred every day as we lined up for class outside the locker rooms, next to the other P.E. classes.  My classmates and I faced relentless teasing, name calling, and humiliation at the hands of the students without disabilities.  Sadly, this often went on with teachers watching.  Some days it was so bad that when we finally were separated from the other classes to begin our lesson, some of my classmates would spend the first half hour crying because of the ridicule they had endured.  Because I was shy and struggling to deal with my own lack of confidence in having to be in a wheelchair everyday, I never stood up to these bullies.  I never stood up for my friends. 

A few months into my sophomore year, I had to drop out of the school and start home study.  But thoughts about what I had experienced in that adaptive P.E. class were never far from my mind.  So when I read a newspaper article about ATOU six months later, I knew I had to call and see what I could do to help.  I was invited to a presentation and was hooked.  Being able to share my experiences and educate people about life with a disability gives my pain meaning, gives my life meaning. 

 The most rewarding part of working with A Touch of Understanding is watching how just a few hours of education can completely change a child's attitude.  How quickly they can go from laughing at our introductory video, to total admiration and respect for individuals facing a disability.  My hope is that in the future, every child will have been through a program like ATOU and people with disabilities won't have to endure the teasing my classmates and I faced.  I believe if the kids that were teasing us had the opportunity to learn about what life was like for their classmates with disabilities, they would have been able to see all they had in common, and become friends.  Through ATOU I have made many wonderful friends.  The people involved are dedicated, fun and welcoming.  I would encourage you to join us in this mission.  Together we can make a difference. 

I'm 14 years old and just finishing up the 8th grade.  I had a stroke at birth, which caused a disability called hemiplegia.  I have right-sid hemiplegia which means my right side is weaker than my left.

I joined ATOU as a speaker this year because I wanted to let people know that just because I have a disability; it doesn't mean that I can't do whatever I want to do.  Sometimes I just do things a little differently or my friends, family or service dog, Lucey, help me.  I love to ride horses, fish, water ski, ride jet skis and snow mobiles, and have been cheer leading for the last 3 years.

I like speaking with ATOU because it gives me a chance to let people know that kids can also have strokes, it's not just something that happens to older people.  It also gives me the chance to let other kids know that I like to do the same things they do.  I just may do them a little differently.

Dan is a below-knee, double amputee as a result of a toxic blood infection, complicated by diabetes, in 1996.  He really enjoys sharing his story with all people, especially the young ones.  In an effort to make his audience comfortable, he attempts to inject a little humor, most of it at his own expense.  His hope is for the kids to come away with a new perspective on disabilities--that we're all just people--and, that we have so much to be grateful for.

 In addition to his volunteer work with A Touch of Understanding, Inc., Dan leads the disability outreach at Bayside Church called Through The Roof.  He also volunteers for Joni and Friends, an organization which ministers to the disabled around the world.  Locally, they offer Family Retreat camps in the Santa Cruz Mountains for families affected by disabilities.  Globally, Joni and Friends' Wheels for the World distributes free wheelchairs to underprivileged people in developing countries.  Dan has been to Vietnam, Thailand and Africa twice as part of the outreach teams.

 Dan adds a tremendous amount of enthusiasm, humor and insight to the ATOU team.  We are so thankful he is with us to touch the lives of the students.

Article, Sacramento Bee, Dan Adragna, June 2, 2005

NOT A LEG TO STAND ON

In the week leading to Christmas, I started feeling as though I had the flu. Each day the symptoms worsened. But as the foreman electrician on a high-tech office building project, I had to plug along. The job had to be completed before noon December 23, and I certainly wasn't going to disappoint. So, I would wake at 5:30 a.m., leave by six, and drive Highway 17 over the Santa Cruz Mountains to start at seven. Only by the grace of God did I make the completion deadline and later a Christmas party at my employer's office. After sitting in a chair there for an hour without saying a word or eating anything, I left. I honestly have no recollection of the drive home.

Typically, I'd check on the kids and get the day's mail upon arriving. Instead, I plopped down in bed and felt as bad as you can feel without being in a train wreck. I had every flu symptom imaginable. Later that evening, I had Ryan drive me to the urgent care clinic. After answering questions and submitting to an examination, a physician said I had the flu. We made a stop at the drug store to fill a prescription and I went to bed soon as we returned home. 
 
On Christmas Eve, we were expected at my brother Dave's home in Half Moon Bay with our families. But by morning, the flu symptoms worsened, so we cancelled. I was taken to the medical clinic that afternoon. A chest x-ray indicated pneumonia in my right lung. I was beginning to feel as though I would black out. The combination of pneumonia with the fact I have diabetes was enough to authorize an emergency room trip to Dominican Hospital in Santa Cruz. The last thing I recall was being wheeled into the admitting office to answer insurance-related questions. Then the lights went out and no one was home. I slipped into a deep slumber—and didn't wake for six weeks.

Somehow, dangerous bacteria had entered my blood system and caused a toxic blood infection called septicemia, like blood poisoning. For good measure, I developed a staphylococcus infection. I was given an assortment of antibiotics and other drugs to increase my blood pressure. My heart stopped pumping blood on four occasions the first three days, and each time I was miraculously saved with a defibulator. I was on dialysis several weeks because of failed kidneys. My body temperature rose to 107 several days in a row. Because of this, the hospital staff warned my family that even if I waking from my coma, I would probably be a "vegetable." My close friends have said I did become a vegetable because millions of brain cells seemed to have vanished.

By the next morning, pneumonia filled both lungs, which prevented breathing on my own. A ventilator was connected to my throat through a trachea tube. It's likely this procedure caused paralysis to my vocal chords, tongue and epiglottis. Because of a high white blood cell count, I had several blood transfusions. From poor circulation and complications due to diabetes, my lower limbs were removed below my knees to stop gangrene. Aside from all this, I was doing pretty darn well.

The hospital staff gave my family virtually no hope. On the day I "flat lined" twice, my pastor was called in to prepare everyone for my death. Upon arriving, he and about 50 of my friends and family members huddled in a waiting room for the eventual bad news. My family instructed the hospital staff to take all lifesaving measures and I am glad they did!

When first becoming conscious and barely opening eyes, I felt like I was in a science-fiction movie or Steven King novel. Morphine provided frightening nightmares and strange images. And suddenly, I would again dose off. Several days passed before I could remain awake any length of time. To no one's surprise, Kelly volunteered to tell what had happened to my legs. I remember it clearly. He said, "Your legs had to be removed in order to stop the gangrene from spreading so you could have a chance to live."

I remember saying, "Well, that's a small price to pay in order to be alive". I honestly felt that way and still feel that way today. Sure, it's an inconvenience and I can't do all I used to do. But I've chosen to focus on what I can do and not dwell on everything else. Compared to being dead, I'll take walking with prosthetic legs any day!

When I physically came alive for the second time in my life, I weighed 85 pounds. I looked down at my chest and saw nothing but skin on bone. Having paralyzed vocal cords meant I had to receive nourishment through feeding tubes. It also meant I had no voice—barely a faint whisper. To communicate, I was given an alphabet board to point out letters. My deformed fingers couldn't grasp a pen.

The constant flow of family and friends encouraged me. Pastors and people I didn't know from church came by to pray daily. My room was filled with balloons, cards, flowers, pictures, posters, books, and Rene's sermon tapes. Not only was I encouraged, but inspired.

After spending nearly four months in the hospital and a rehab center, I was taken to the house I grew up in. It sure felt good to be home. After everything, living with mom and dad was a treat. My new mode of transportation was a manual wheelchair.

In November 1996, I was fit with my first prosthetic legs. Having bought in August a car with hand controls, I was beginning to regain my independence. During this time, I contemplated what to do with life. I could no longer work as an electrician, so I began attending college—something I'd always wanted. In February 1997 I rented a room from my friend Steve and moved back to Aptos.

I've often been asked if I had ever been depressed. Or would I change anything about my life? My answer is always, "Not a chance!" Considering that I probably should not have survived, how can I be depressed? My primary physician during this ordeal told an RN and friend of mine that he had no medical explanation for my survival!

These past few years volunteering with A Touch of Understanding have been a real blessing to me. While a challenge initially, it has given me the opportunity to hone my speaking skills and to serve with awesome group of volunteers! My favorite part of the presentation is answering questions, especially from the younger children as they will ask anything! And I strongly encourage all students to do so--no question is off limits for me. I think this is a great program. I wish thee was one when I was growing up!

You can reach Dan at dsadragna@comcast.net
 

Darlene O'Brien brings energy, laughter and insight to A Touch of Understanding.

After a long battle against detaching retinas, Darlene lost her sight completely in 1998.   In July 2001, she attended Guide Dogs for the Blind, where she was partnered with her beautiful and loyal black Labrador, Callahan.  Darlene is also the mother of two incredible daughters who attend school in Rocklin, CA.

Darlene says that although she has lost her sight, she never lost her vision.  She passionately pursues her ideal of a world where "blind" refers to the judgement we pass on one another based on differences of ability, nationality, color, and creed.  Her fast-paced and ambitious lifestyle includes serving as the vice president of the ATOU Board of Directors.  Darlene has been a speaker for the organization since August 2000 and served as volunteer coordinator for two years before becoming board vice president.

Darlene has also started a company which is aptly named Blind Ambition, capturing her zestful approach to life and her determination to help blind and visually-impaired people find meaningful work.  Blind Ambition offers blindness etiquette training and consulting to private corporations and federal, state and local governments.  Through presentations at meetings, conventions and conferences, Darlene offers a lively Blindness Etiquette Training program to human resource professionals, recruitment and staffing agencies, medical professionals, teachers, and many others.

In addition to running her company, Darlene serves as the career developer at the Society for the Blind in Sacramento, CA.  In this position, she helps visually-impaired and blind job seekers find competitive employment in the greater Sacramento area.  Darlene spends much of her time in the professional community speaking with employers and introducing the idea of hiring a qualified and competent visually-impaired or blind applicant.  She acts as liaison between applicants and employers, coordinating the recruitment process, including interviewing, assessing accessibility issues, evaluating job sites, and recommending adaptive technology for the job.

Before losing her sight, Darlene was an avid basketball player who also shot a mean game of pool.  She still wins at pool sometimes and is determined to find a way to conquer the courts again.  Though known for her commonsense and ability to keep two feet on the ground, Darlene also loves roller coasters and plans to skydive in the near future.  At amusement parks, you can always find Darlene behind the wheel of a bumper car.  As she puts it, "These are the only cars they let me drive anymore, and crashing is considered a good thing."  

Regarding A Touch of Understanding, Darlene says, "I originally volunteered to work with A Touch of Understanding because I wanted to help children and make a difference in their lives.  Little did I know that no matter how often or how long I will do this, I could never give as much as I receive from the honesty and understanding of the children.  What a difference just 'a touch of understanding' makes." 

Click here for Board of Directors article

I was born with congenital hydrocephalus.  My mother found out about my condition when she was 7 ½ months pregnant from an ultrasound picture that showed my head was abnormally large for that stage of her pregnancy.  She was sent to UCLA Medical Center in Los Angeles for high-risk pregnancies.  The doctors at UCLA decided to try an experimental surgery to correct my condition while I was still in the womb. At that time, fetal surgery was on the cutting edge of technology. They performed two brain surgeries, to relieve the pressure on my brain, while I was still inside my mother's womb.  I was the first baby in California to have this surgery and the first baby in the world to survive.  I had other complications at birth, including epilepsy, vision problems, hearing loss, and scoliosis.  Altogether, I have had 12 surgeries to correct many of these problems.

My early challenges were learning to do basic functions such as sitting up, crawling, and walking.  I went to an early intervention program at UCLA for children with disabilities where we were taught, using special devices, how to strengthen our bodies in order to perform these tasks.  I used to sit in a corner box to strengthen my back muscles, which helped me to learn to sit up.  I would practice crawling using a carpet roll under my stomach supporting my body, which helped me to stay on my knees and learn how to crawl. I used a child-size walker to help me walk. As I got older, I think the hardest thing for me was my balance problem. I never learned to ride a bike or skateboard but I can do those things now when I play video games.  I do like to rock climb and play Challenger Baseball, which is baseball for kids with disabilities.  I have no directional sound, since I'm deaf in my left ear, but I've learned to adapt by asking people where they are. 

My biggest challenge was in my junior year of high school.  That year I had 3 surgeries and had to miss a lot of school.  One of the surgeries I had was for my scoliosis and I had to wear a body cast 23 hours a day, for 6 months, to straighten my spinal cord after a 10 hour surgery. That was really uncomfortable. The only time I could take my brace off was for 1 hour a day to take a shower. I also had a spinal cord surgery and two eye surgeries that year.

I continue to see specialists on a 6 month to 2 year basis.  I have an MRI every 2 years to check on my shunt, which is a flexible tube surgically placed in the ventricle of my brain.  The end of the shunt is in my abdominal cavity and the shunt drains the excess spinal fluid that accumulates in my brain. Sometimes the shunt malfunctions and has to be replaced.  I've had 5 shunt revisions, so far, and I am not sure how many more I might need.

As long as I take medication everyday, my seizures are controlled.  I am capable of doing almost everything.  Some things, like cutting my nails or toenails, are difficult because I have fine motor problems.  That also affects my writing, but I use a computer as much as I can.  At this time, I'm very dependent on my mother for driving but I'm working on getting my driver's license someday soon.

I graduated from Granite Bay High School in 2001. While I was there, I was mainstreamed in almost all my classes.  I started working at Blockbuster Video while I was in high school and still work there part-time.  I just graduated and received 3 degrees from Sierra College in Administration of Justice in May of 2006.  One was for AA in Courts, one for an AA in Corrections, and one for an AA in Law Enforcement. 

After finishing college, I took a 51 hour course at the Rocklin Police Department Volunteer Academy.  So far, I've helped them log in evidence and assisted in a SWAT Team Exercise for crowd control at a simulated high school take-over.  I've been on ride-a-longs with police officers and I've helped to maintain squad cars with pertinent information and supplies. 

In addition to volunteering for the police department, I started volunteering for ATOU this year (2006-7).  It has been an incredible experience for me.  I've been able to share my story with children and make them more aware of people with disabilities and how to act towards them. I tell them that we are not all that different and we all like the same things, even though disabled people may have to do some of the same things differently.  I encourage students to never doubt what they can accomplish if they put their minds to it and tell them how important education is in helping them reach their goals.  My motto for everyone, including those with disabilities, is:  FOCUS on what you CAN DO...not on what you CANNOT DO!  Find another way to do the things that are difficult for you... and always remember, it's OK to be DIFFERENT!

ATOU has been as valuable to me as I think it is to the students.  I've met so many wonderful people who have so many life experiences to share.  I believe we open the eyes of the students in a way no textbook ever could.  The "hands-on" experience with the wheelchairs, canes, Braille cards, assistive devices, mirror boards and the messages of the presenters are life-changing for these students.  It's just an incredible disability awareness program.

Photo and Caption, Granite Bay View, Kiersten Schmidt, Nov. 2005

Article, Granite Bay View, Kiersten Schmidt, Feb. 2006

This missioin of A Touch of Understanding, Inc. is to encourage acceptance and respect for all individuals and to minimize the discrimination and misunderstanding experienced by people with disabiltiies.  What a privilege it is to work with this team of incredible human beings toward our goal!

The team of ATOU volunteers has become a circle of friends, more like family than coworkers.  This close relationship is easily observed through the laughter and cooperation shown when we arrive for a presentation.  The fact that some of us arrive using white canes, service dogs, wheelchairs, artificial legs or arms and share this camaraderie is a lesson in itself.

The combination of meeting the teammates, speaking with our disabled volunteers and participating in activity stations gives the students a true glimpse into the lives of disabled people.  Through this newfound understanding, students are more likely to invite a person with disabilities into their lives.

My life has been enriched exponentially by the friendships I share with individuals with disabilities.  It is my hope that the students we reach will have their lives enriched as I have, and enrich the lives of those with disabilities as well.

In November, 1991, when Mike Marasso was three weeks from graduation from college, he was home for a family reunion.  He was standing on the flat carport roof, video taping activities in the yard below.  He took a misstep and fell about 10 feet to the driveway below.  Unfortunately, his head took the impact, and he received a severe head injury.  He was in a coma for about 3 months.  As he very gradually came out of the coma, he received lots of physical therapy and eventually came home in August, 1992.  As a result of the brain injury, he is mute, has short term memory problems, has limitations in vision, walking and using his right hand.

The good news is he kept his great sense of humor, still has his long term memory, was able to receive his diploma in History from Cal State Long Beach, and now uses a speech synthesizer and signing to communicate.  He's active in the Head Trauma Support Group that meets at Easter Seals weekly, travels, loves watching the Kings, participates in many activities with his family, works out at the gym daily, and enjoys life, family, friends, music, and dog, Zeus. 

He says he enjoys ATOU because he likes to see the kids so attentive to his story.  He feels he can make a difference in showing how important it is to protect the head in everyday activities like biking, skateboarding, roller blading, skiing, etc.  He likes the kids' questions, and always looks forward to working with the friendly ATOU "family". 

 Click here to view a KOVR13 news article about Mike

Article, Vacaville Reporter, July 31, 2005

Article, Vacaville Reporter, March 26, 2006

Article, Stumps.org Newsletter, Summer 2006

It seems like a long time ago ... drinking my morning coffee and skimming through the SACRAMENTO BEE en route to the sports section. What's this? The second section had most of the entire front page dedicated to a group called 'A Touch of Understanding'.  I read the article ... this sounds interesting! They had listed a contact phone number so I called them.  The following Wednesday I met Leslie and her dad Ed for lunch and I was invited to observe the next ATOU presentation and the rest is history.

It not only seems like a long time ago ... it was a long time ago, 10 years ago!

After living my entire life in the fast lane I had suddenly became 100% disabled and the best therapy I discovered was talking about my situation. I joined ATOU because of the therapeutic value I received but after several speaking sessions I noticed my audience (usually 3^rd to 5^th grade school kids) changing before my eyes. The kids gained as much from the program as I did!

That fast lane I mentioned ... I had a good education, (I stress the importance of education to the kids) which enabled me to become an Officer in the United States Marine Corps and spend a fantastic career flying the Douglas A4 Skyhawk. Imagine a 24-year-old kid with a government credit card and a supersonic jet ... aircraft carriers, supersonic flight ... rock n roll, hair on fire! And they even paid me!

The flying continued but now it was fire bombers during the summer fire season ... the Grumman S2, PBY Catalina, B17 Flying Fortress, C119 Boxcar, PB4Y2 Privateer became tools of the trade. Winters consisted of snow skiing but occasionally a well paid flying safari in other countries would happen. I have flown through Central and South America; I have seen the Galapagos and Cocos islands from the left seat of a PBY Catalina.

I have done things that will never happen again ... Tegus, Honduras I ease the throttle forward, the R2800 responds as the F4U Corsair lifts off the runway, gear up, flaps up. I keep my Corsair on the deck and soon I see 300 knots, I smile, the sky is mine.

Eventually the airlines looked favorably on me and soon a Captain's seat with AirCal and eventually American Air Lines became a reality. That airline career was cut short in 1993.

The fast lane, speed (never enough) was my life. I built my own Pitts Special, flew aerobatic contests and air shows and in my spare time built racecars. September 1993 I had just won the bi-plane silver championship at the Reno National Air Races, the following day I am off to the Bonneville Salt Flats to meet my racecar partner and try out our new racecar, an E Fuel Lakester or E/FL. Two days later, as the car accelerated towards 300mph something happened. All I know is that I awoke 2 weeks later to find the car had rolled many times and the roll cage had scraped my hands off.

Suddenly I am, 100% disabled, my world has changed forever

And

Life would get better every day!

Not wanting to sit and watch paint dry I was soon back in the air. I became the first pilot in the world authorized to fly with two myo-electric prosthetic hands. I was back flying (and winning) aerobatic contests; I was in demand to fly aerobatic air shows. I even spent a month flying the aerobatic air show circuit in South Africa!

Busy, busy … touring the country as a speaker for my prosthetic company and volunteer work with ATOU seemed to occupy more and more of my time. It was at an ATOU function that I met good friend Nancy and her service dog Union. Soon a Golden Retriever was at my side and my life changed forever. My ATOU presentations now include service dogs and to date 'Magy' has participated in over 650 ATOU presentations to about 20,000 kids. Several volunteer ATOU speakers and several other people now have service dogs ... all because of MAGY!

Magy has become my shadow but on weekends she wears another hat, the hat of an agility champion. Soon after Magy's arrival I was watching 'Animal Planet' on TV and first saw the sport of agility. We soon began lessons followed by trials. She has earned over 35 agility titles and last summer a Canine Performance Event Trial Championship or C-ATCH. She is the first service dog to attain championship level and together we are the first service dog / disabled handler team to attain an agility championship. Life really does get better every day.

People often ask me what ATOU really does.  I simply say, "we bridge the gap where teachers and parents often fail, because if there are no disabilities seen in the classroom or home, the youngster gets no exposure to the disabled world. We are all the same; some of us just use different tools to accomplish the same goals".

Life really does get better every day!

Let me tell you a little bit about myself.  I was born three months too soon, weighing one pound, twelve ounces.  My parents were told that I had suffered a severe stroke on both sides of my brain during birth, due to my premature birth.  If by some miracle I would survive, they were told I would never walk or talk.

During the first two weeks of life, my parents were unaware of my head swelling and were shocked and surprised to find that I was scheduled for surgery to treat my progressing hydrocephalus.  Hydrocephalus is when the excess fluid of the brain does not drain properly. A shunt was placed to drain this fluid.  Since then, I have had four surgeries and have gone, an unheard of, thirteen years without having another shunt operation.

I am proud to say that I have proved the doctors wrong.  Today, in 2006, at fourteen years old, by the grace of God, I am fully functioning with only right-sided hemiplegia.  Hemiplegia is a condition which affects the right or left side of the body, causing the muscles to stay in constant contraction.  Due to this unfortunate condition, the everyday obstacles are endless, but slowly I find a way to overcome them.

Amazingly, I have learned to ride a bike, which most kids with hemiplegia never dream of accomplishing. I have also performed in twenty-eight musicals.  Most recently, I have joined the team of A Touch of Understanding, which has become an activity I am most passionate about.

I am a speaker for A Touch of Understanding.  It gives me a chance to be in front of an audience, which I love.  It reminds me of all the things I've overcome which gives me joy and more confidence.  I think the students like the fact that I'm close to their age.  I am able to help them understand what life is like for me and what I go through everyday.  I tell them it's hard enough to have a disability, when kids tease you, it makes it so much more difficult.

  A Touch of Understanding is important because it lets the students know that people with disabilities are normal people just like them.  We like to laugh and watch movies.  These kids may have a disability themselves one day and if that happens, they can look back on their experience with A Touch of Understanding and remember that Paige, Mike, Courtney and the others were content and happy with their lives.  And they can be too!

"I've had Parkinson's Disease (PD) for fifteen years — since age 35.  I'm now 50 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 nine 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 had to start 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) Surgery

On December 22, 2003, I had bilateral Deep Brain Stimulation (DBS) surgery at the University of California in San Francisco, California.  During this 11-hour brain surgery, two pacemakers were implanted in my chest and wires were run under my skin, up my neck into holes in my skull.  DBS is not a cure, but it gave me back most of my life.  I no longer have the unbearable leg pain and the dyskinesias are gone.  But alas, no PD treatment is without its side effects.  Due to the DBS, I now have slurred and delayed speech. DBS is not a cure, I still have mobility issues with walking and balance.  However, 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.

Before my surgery, I had been home bound 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 was "graduated".  During my 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."  Well, my wish came true and I heard about a wonderful disability awareness group called "A Touch of Understanding" (ATOU) started by Leslie DeDora.

A Touch Of Understanding

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 hands-on activities which allow them to "walk a mile 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.
 

Press Release for Pam's contribution to the book "Proud Hands"

Pam's feature page in "Proud Hands"

Patty is a retired computer programmer from Intel Corporation.   She now stays busy with all of her athletic endeavors, which include bicycling, kayaking, water skiing, snow skiing, golf and lots more.  She is also on the Board of Directors of Disabled Sports - Far West, a non-profit organization that offers sports programs to anyone with a disability.

Patty lost her right hand in an accident when she was 11 years old.  This hasn't slowed her down though.  Besides her athletic activities, she enjoys sewing, needlepoint, reading, and raising her son, Charlie.  She has worn a passive prosthesis and a myoelectric prosthesis in the past, but now only wears the various prosthetic devices she has had designed for her for snow skiing, golfing and kayaking.

Patty is a speaker with A Touch of Understanding.  The students are always amazed at all the sporting activities Patty is involved in as well as the adaptive equipment she shows them.  Patty also manages the website for A Touch of Understanding.

Patty enjoys being involved with others that are disabled to show them "where there's a will, there's a way!"

Paul is a caring, likeable person who uses obstacles and experiences to propel himself into challenging opportunities.  A survivor of a serious auto accident that resulted in a traumatic brain injury, he uses compensatory strategies to minimize the negative effects and maximize his life choices.

Paul lives in Rocklin, is an artist, and enjoys reading and movies.  He is highly social and thoroughly enjoys sharing his story with the students in A Touch of Understanding.  He values being a presenter because it allows him to grow as a person and make a contribution in helping others better understand individuals who have more visible challenges than their own.

In Paul's words, "As I think about how A Touch of Understanding has impacted my life, I realize that it has changed me into a more complete person.  How?  By sharing my story with students, I hope that they gain insight into my experiences; that my life can make a difference in theirs." 

"When I participate with the other volunteers, I gain inspiration, encouragement and feel proud of our efforts.  I realize that we are filling a specific need and we receive consistent feedback that we touch a special chord in our listeners.  If we can encourage mutual understanding and respect, we can change lives...including our own."

A Touch of Understanding is stronger and has a more powerful impact thanks to Paul.  His patience, perseverance and humor are lessons for all of us. 

THE INVISIBLE MAN 

I am a volunteer for a great organization called A Touch of Understanding (ATOU).  But how did this inspiring group and I cross paths?  Let me back up a bit.  Growing-up, my life centered around art, nature, and sports.  I developed quite a skill with art and have won awards at the California State Fair, as well as, local exhibitions.  Nature is my passion.  I am fortunate to have a great dad who shared his love of backpacking, fishing and camping, and from a very early age I grew to love the outdoors.  I have played sports all my life and participated on recreation and high school swim teams and have many awards to show for my hard work.  I am proud to say that I was a member of a high school football team that became State Division Champions in my senior year.  These activities served to instill in me a strong desire to be a team player, be competitive, and never give up.  Little did I know, these qualities would soon be tested.

At age 19, I was involved in a devastating auto accident that resulted in a very severe head injury.  When I was found, I was not breathing, so I went without oxygen for a while, causing additional brain damage.  I spent one month in emergency intensive care, most of it in a coma-like condition.  I then transferred to a hospital that specializes in head injury recovery.  There, I had to re learn how to walk, talk, even, swallow.  After three months of intensive therapy, I still had much work to do...I was in a wheel chair, was barely understandable once I was able to speak, and was still living on thick liquids.

Thankfully, I rediscovered my faith, and God walked with me through all these challenging times.

I transferred to a facility that helps people like me transition from 24-hour care to home care.  Finally, 6 months after the accident, I was able to return home to my parents.  However, I would continue full-time rehabilitation for a year.

During that time, I returned to college and with dedicated full-time tutoring from my mom and lots of other help, I was successful in completing the two-year degree that I had begun before the accident.  However, I encountered discrimination and rejection from my peers for the first time in my life.  No one would make eye contact with me or even say hello.  I knew they were uncomfortable with my disabilities.  I felt invisible.

I heard about Leslie and ATOU in 1998 and knew immediately this was the opportunity I had been hoping for to help others bridge the gap between discomfort and compassion in relating to disabilities.  I feel I have come very far in my recovery and I am extremely grateful.  I want to give back to my community and my ATOU message is geared to reaching these young minds and by sharing my story, trying to inspire them to believe in themselves and never give up. The students are often surprised to know that I am disabled because I have made great progress physically.  However, I still have many problems...

I take longer to process thoughts and my memory is very poor.  I believe this helps students recognize that hidden disabilities are just as real and difficult as more obvious ones.

We know we've touched the students when they open up and share about their own family and friends who are disabled.  They see us with different eyes and I believe that on some level, I am helping to change hearts.  I personally have gained so much from volunteering with ATOU.  I am more confident, compassionate, and inspired by the other volunteers.  I always end my presentation with a request that if the students find themselves in a situation where a disabled person is probably feeling invisible; try to let them know that they matter with a simple smile or a "hello".  In this way, I believe that my work with ATOU helps lessen the "invisibility of disability"...I know it has helped me.

I met the ATOU group when they came to present to my sixth grade class in 1993.  By that time, my son, Mike, was recovering from a severe head trauma and he, also, came to my class to "talk", even though he's mute.  I began teaching a Challenges unit and all of these programs greatly enhanced the curriculum.  ATOU came to our school in Folsom, California from then on.  When I got ready to retire, I told Leslie I'd like to volunteer for her.  A year or so later, she asked if Mike would like to join the speakers and he agreed and loves it!  Mike has a caregiver during the day to help with therapy and his daily schedule, so the caregiver has become a part of ATOU as well.

I've seen ATOU grow so much in 13 years and I'm proud that I can help out with such an important part of the community.  Education is so vital to the understanding of a part of society that sometimes gets overlooked or ignored.  As a parent of a disabled son, I know this program should be seen by every school.

Hi my name is Steven Sanchez.  I have a disability called Cerebral Palsy.  I started working with A Touch of Understanding in 2005.   I found out about ATOU through the Volunteer Center in Roseville, CA 

I remember calling Leslie for the first time.  She asked me what my disability was and invited me to a presentation.  In this particular presentation, I observed the program. I had no responsibilities.  I remember sitting in the classroom for my first time and thinking this is a neat program.  I was hooked! 

I am now a speaker for the program.  I speak to the students about Cerebral Palsy.  I tell them I was born with my disability.  I explain the tools I use that help me get around: forarm crutches, manual wheelchair and my new power wheelchair. (Thanks to the love and devotioin of my mom and stepdad!)

When I enter a classroom a lot of the kids know me already because I work at United Artist Theatres in Roseville.  So, for me the program doesn't end in the classroom, the kids see me at work.  They see that I have responsibilities and good friends, especially Kara.  She is a special friend because she sees me instead of my disability.

One day, I had an experience I will never forget.  I was at my desk at the door of the theater and this little girl came in.  I took her ticket.  She said hello and then left.  But she came back and started a conversation with me.  I thought that was really neat.  Even now I can't go anywhere without someone saying, "Hi, Steven!" 

A Touch of Understanding has made a big impact on me and I know I'm making a difference.  (I had tears in my eyes as I was writing this. I can't thank ATOU enough.)