I Hate ALS

My friend Ethan was 8 when he wrote this story for a candlelight vigil in May 2007. His grandfather passed away shortly after on July 18th 2007. He has asked me to help him send his story.

My name is Ethan Dolph, and my grandpa has ALS.
I hate ALS
It’s sad for someone to have Lou Gehrig’s disease and horrible for family members too. My grandpa chokes when he tries to eat and drink. He falls down. He can’t use his hands to brush his teeth or send me e-mails. He has a feeding tube because he can’t swallow, and the only real food he can eat is applesauce and sometimes hot cereal. He can’t smile.
He used to be able to work with wood and help us fix things, and whenever Mommy had trouble, she’d call him. Five years ago, he built me a playhouse. But now he can’t build things like he used to. And sometimes I’m scared of talking to him on the phone because I might not be able to understand him and answer his questions.
Grandma has had to call 9-1-1 three or four times to get help when he fell. She is always working hard, because taking care of the house and Grandpa is hard work.
We’ve all been sad about him having ALS, and whenever I start talking about it to Mommy, it makes me cry. But the good thing is I still have fun with my grandpa. After we found out he had ALS and would start getting worse, we planned a trip to New York with him. We had lots of fun there. I helped drive his power scooter in Central Park, and we went up the Empire State Building. We go to Spokane on many weekends to see him, and I can hold his hand or we can watch the Speed channel together.
I’m also glad that people from the ALS Association in Spokane help Grandma so much. They make food for her and visit. They help get the things my grandpa needs, like a power chair and a lift so Grandma doesn’t have to call the firemen all the time. They help her figure out the insurance papers and which doctors to talk to. And all the people in the group know what ALS is like, so they have lots of good ideas about how to have a better life with ALS.
I pray for my grandpa every day. When I grow up I hope that someone will find a cure for ALS. Maybe it will be me.

Dunedin man walks for Lou Gehrig's disease cure

By Tamara El-Khoury, Times Staff Writer
Published Thursday, April 10, 2008 8:00 PM

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[JIM DAMASKE | Times] Bill Motley, who has Lou Gehrig’s disease, takes his dog, Tessie, out for a walk while his wife, Camille, sees him off.

DUNEDIN — Bill Motley served in the U.S. Army during the Vietnam War and later sweated his way through 16 marathons.

Today, he considers himself lucky to be able to walk and talk. After all, many of those diagnosed with his disease can't.

There will be a time when amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease will take away those abilities. Until then, he's using his voice to spread awareness of ALS and his feet to raise money for research.

Saturday, he and his supporters — dubbed the "Motley Crew" — will walk 3.1 miles at Bright House Field in Clearwater in the ALS Association's annual fundraiser. Hundreds will participate at 2:30 p.m. in the Walk to Defeat ALS, which raises money for research and patient care.

Last year, 477 people raised about $100,000. The goal this year is for 600 participants to raise $185,000, said Kamden Alexander, spokeswoman for the ALS Association's Florida Chapter.

There is no cure for ALS, a progressive neurodegenerative disease that paralyzes those who have it. Although their minds stay sharp, those with ALS progressively lose their ability to walk, talk, use their arms and eventually the ability to breathe. The disease is considered rare and is found in about two per 100,000 people in the general population.

Motley, 59, a Dunedin resident, worked as a police communications officer for the city for more than 20 years. After the Pinellas County Sheriff's Office took over, he worked in the code enforcement department for Dunedin and then Tarpon Springs.

He and his wife of 32 years, Camille Motley, have six adult children.

Motley began developing symptoms in 2003 when he started dropping his head and couldn't hold his right arm up when running. His left arm was already paralyzed from a motorcycle accident in 1970. Like all patients who are diagnosed with ALS, he was given two to five years to live. But Motley's progression has been slow.

"(God's) keeping me around for a reason," Motley said.

His marathon days are over. He can't lift a glass or button a shirt, but Motley is still active. His running buddies threw him a surprise party and bought him a racing three-wheeler. He serves on Dunedin's ADA Committee and Environmental Quality Committee. He's part of an ALS support group.

"I'm not going to be idle," he said. "I'm going to do as much as I can to make this disease known because it's so rare."

He thinks his military service made him more prone to developing ALS and encourages other vets with the disease to file a claim with their local Veterans Administration officer.

Although many questions remain about the cause of ALS, studies have shown that those who served in the military are nearly twice as likely to have ALS than those who didn't serve, according to the ALS Association.

Motley hasn't lost his competitive spirit. He and another ALS patient are in a challenge to sign up 100 people to their teams.

"You've got to have your faith, you've got to stay involved in the community," Motley said. "Focused, focused, focused, focused. Just like running a marathon."

He wants people to say he ran a good race.

Tamara El-Khoury can be reached at tel-khoury@sptimes.com or (727) 445-4181.

Life in reverse

April 13th, 2006. 47 years old. I sat stunned, alone in my primary care doctor’s office as she repeated the dx of ALS. After a few years of tests and MRI’s to figure out why my right side was diminishing in strength, this was what it had come to. She appeared to be as stunned as I.
After a lifetime of establishing myself as a driven, determined, and fiercely independent individual, I was being forced to face a reality of slowly losing every ounce of dignity and independence until I would be totally dependent on everyone around me. Being told that no matter how much I drew upon my stubborn determined strength I had nurtured within, it would be and indeed was happening anyway.
I had been raised surrounded by a great supportive family. 4 brothers, 2 sisters, and 2 parents of German heritage proud to be able to outrun and outlive any tragedy sent our way. I was the third child, and had lived the most colorful life of any of my brothers and sisters. Our parents encouraged and exemplified a strong work ethic. I had always been taught never to let the obstacles get in my way. If you come up against something you find in the safest and fastest way over it or around it. There was always at least one way. So naturally, being told there was no way around ALS was probably the most difficult thing that I would ever encounter in my lifetime. I was being forced to reverse every life lesson ever learned.
Remember the aftermath of 9/11? Remember how stunned we all were, and how angry that this could happen to our nation, and how numb we were? Then slowly the feeling of camaraderie overcame every one of us. No matter how angry we were, we could not help but to be inspired by what it brought out of each and every one of us. Strangers comforted strangers-the poor reached out to the rich. The famous stood shoulder to shoulder with street people. Slowly across our nation we were unified by tragedy. We were fueled by knowing that there would be light at the end of that tunnel, that we would one day began to heal. Then slowly it began. Little by little we returned to our lives, and a part of us relinquished that anger and pain. Sometimes it seems that we may have almost forgotten.
My observation since my own diagnosis of ALS is that “PALS” (patients of ALS) are stuck in our own “9/11”. We were put there when we were given the dx of ALS. We reach out to each other to keep one another afloat. We comfort a wife when her husband's life is snatched by the hostile disease ALS. We remind each other daily that we are not alone, that there are many of us who know this pain. We are in fact all we do have to reach out to. We do not see the light at the end of the tunnel-for there is none. As in no cure, no treatment, no remission. Imagine being stuck there. We have been unable to get the attention needed from our government, from our media and from our peers. Instead we find strength from those left behind, and we learn from their struggles. Like vultures we are forced to survive on the remnants of their loss. While I would not for a moment trade the golden friendships I have forged with these people, the most courageous people I’ve ever met in my life, I would still like to see the day when no one has to suffer from the merciless claws of ALS. Please do your part to help us gather some attention for this orphan disease.
Sincerely,
Jenny Hoff
Spokane Washington

Keep on posting, please

We now have 38 who have indicated they wish to be authors. We have a ways to go to get all we need to make an impact. If you haven't posted your story yet, or emailed it to the celebrities, it is not too late. Make it a project to complete by Tuesday. We can only get our message out if we band together.

Jay's story

My husband is a composer, a teacher, an inventor, an artist, a pianist, and an avid prankster. Before ALS attacked his body, laughter permeated from our household, and music could be heard at all hours of the night. I remember initially, the nights he would awaken with horrible cramps in his legs, and rushing to buy calcium tablets thinking it was some kind of vitamin deficiency. I remember that a man who could type 150 wpm on the computer keyboard, and in the next instant sit down and play a mean Rachmonanoff, was suddenly unable to open a ketchup packet. I remember the fear that me gripped when the doctors starting throwing around the acronym "ALS". I had done my research, and I knew what it meant...3 to 5 years, and a horrible piece by piece deterioration of his physical body, ending in death, most likely by suffocation.When we received the news, Jay sat quietly staring. It was Fall of 2005, and by Christmas, he was using a cane. He watched the girls unwrapping their gifts and a deep sadness gripped him. "How many more Christmas's?" he wondered... By April of 2006, he was in a wheelchair, and by the following Fall, he was unable to play his beloved piano. The year 2007 brought the full time use of a breathing device called a Bi-pap machine and a feeding tube and no more of his favorite beef ribs. It was also the end of family dinners...By Christmas 2007, he was experiencing respiratory failure. In January of 2008, Jay was ventilated, effectively taking all of his speech and leaving him completely dependant on a machine for his life.We do not have the funds to hire full time nursing care, so my daughter's and myself have learned the ins and outs of vent care, tube feeding, changing dressings, transferring, and generally caring for a completely paralyzed ventilator dependant person. Some nights, no one sleeps. Often, we hold each other and cry at what these two years have wrought, but most of all, we are grateful. Grateful for each day that we are together and what it has taught us.Jay has never lost his fighting spirit. He has composed an entire children's musical using a software program and one functioning finger. He is quickly learning an eyegaze system, so that when the use of his last remaining finger leaves him, he will still be able to communicate using his eyes and a computer keyboard. He is now composing a string quartet, and completing his 9th time reading through the Bible. He is his daughter's hero, and my beloved. We have been given two years to learn a lot about each other and the love and compassion of those around us. I will not pretend that the suffering and losses are not huge, but I will say, that we have chosen to walk this road with a positive attitude and peace in our hearts. We are human, and we grieve, but we know that something far greater than us is at work here and that the human spirit is far stronger than we think it is.The best outcome, would be a cure. My husband would be able to walk his girls down the aisle on their wedding days. He would see his younger daughter's graduate high school and his older daughter's graduate college. He would grow old with me in the small town we always dreamed of living in together. In my dreams, I see a cure for this disease, and a monster being destroyed. I see people with ravaged bodies whole again... I see my husband.. able to hug me and tell me in his precious voice, that he loves me.TJ ThompsonCALS to Jay Thompson

Paula Ann Jenkins 61
Diagnosed with ALS 4/07 Passed away 2/08

Left behind 3 adult children 39, 38, and 28 years old. 3 grandsons, one granddaughter (2 months old), 1 mother, many friends, and 2 cats


To Whom It May Concern:

Obviously…letter writing campaign going on-wanted to give my 2 cents worth!

I keep re-edting this letter and am having a really hard time getting it out because I keep trying to find the words to sum up the craziest thing that ever happened to me. I'll never be left without a story to tell that is for sure. You want a funny story, sad, pathetic, inspirational? Well it all happened and it all happened in one year.

A year ago today my mother was alive and in the midst of tests and «I don't know what's wrong with yous». At this time last year we had no idea that the rest of our lives were going to be spent without her. And I had no idea that my sister would not be talking to me! Life changes on a dime.

My mother passed away 10 months after she was diagnosed. Some people like to call what we've been through a journey and that is not being trite or overdramatic -I feel like I've been through a war I've done things I thought I would never have to do, made decisions that I never dreamed would have to be made.

When my mom was finally diagnosed I expected my mother to have the opportunity to fight this disease with every resource available.

I did not expect:

• That my mother’s life would be shortened because we didn’t have a wheelchair accessible van to get to the better doctor.

• That a terminally ill person would have to wait 4 months to see a doctor! THAT is disgusting! I had to beg and plead for my mother to get medical attention from day one to day last. She was given the worst care and bad advice from people with degrees every step of the way!

• I did not expect that my mom would have to sit in her own feces for hours because her morning health aide overslept, and her afternoon aide just decided not to show up for work that day!
.

Lest you think I’m a whiner I’ll give you the up sides.

• My mom had a rough time in her life -like everybody else some was her own doing some just bad luck. She lived with a lot of fear and frustration. All of that went away when she got this. I am proud of my mother she died with dignity, strength and courage.

• MANY MANY people went way above and beyond for my mother. These stories are the ones that made it so hard to keep this letter to just one page. I want to give everybody their due and tell about each person and their kindness, generosity, and compassion.

• My mom and I laughed our asses off on many occasions. I hold the record -6 minutes! to whip a wheelchair out of the trunk – lift my mom INTO the wheelchair and onto the toilet at the 7 Eleven!


AND I never realized until now:

That if I live to be 78 years old I will have lived more than half of my life without my mother in it!! And that is what this is about. Some attention needs to be paid to ALS, to find a cure, a treatment, a test. Please read all of the e-mails believe me you will be blown away by the stories I know I have.

Thank you
Stacey Lisk

My letter to Oprah

Dear Oprah,

I have heard you say many times on your show, “everyone has a story to tell”. I’d like to share with you mine.

I could tell you about the year 1992 when my husband and I lost our King Crab boat in the Bering Sea of Alaska. It was out fishing crab, sank due to bad weather, and all 6 people,were lost at sea. My husband and I supported each other as we worked our way thru the despair.

I could tell you about the years 1996, 1997, and 1998 when I was diagnosed with a rare form of cancer, cancer of the appendix, and fought hard to live despite doing many rounds of chemo that tried to kill me. My husband kept me in fighting shape and took care of our kids, who were 4 and 6 when I was diagnosed.

I could tell you about the year 1997, when in the midst of my cancer fight; my best friend was killed in a freak boating accident. She was 36. My husband kept me literally kept me standing thru the shocking and sudden loss of my Madeleine.

But instead, I’m going to tell you about the year 2005. You see, that was the year my husband was diagnosed with ALS-Lou Gehrig’s disease. ALS is a horrible, rotten, no good disease that will eventually rob my husband of all movement in his body, breathing included. Imagine if you can my husband, my handsome, barrel chested, physical, commercial fishing husband struggling to pick up a toothbrush to brush his teeth, or a hairbrush to brush his hair. This same wonderful person, who 5 years ago was helping to move 700 pound crab pots around the boat deck, now must devise clever ways to get a fork to his mouth because he doesn’t have the muscle strength to lift that fork. So, now, it’s my turn to stand and support my husband and fight hard once again.

I am writing to you in hopes of bringing awareness to this insidious disease. There are approximately 30,000 people living with this disease in the US. Most have a life span of 2-5 years. There is one medication that can help extend life 2-6 months, yes months. ALS is fast and cruel in its progression. A National ALS registry is on the cusp of fruition. This would allow the disease to be tracked, trends spotted, new beneficial drugs to be discovered, and ultimately a cure found. However, the bill has been blocked by one lone US Senator from Oklahoma. Maybe with your national media awareness that could change.

ALS patients are probably some of the most selfless, shining spirits you could meet. They face incredible odds and challenges everyday. Talk about “giving big”! ALS patients “give big” in many ways. Some live in wheelchairs to keep them mobile; some live with ventilators to help them breathe, and some speak with communication devices to keep their voices heard. But it is the spirit of the ALS patient (PALS) that “gives big” back to many many people. The challenges they face, make those of us who care for PALS realize that life is not about the big things, the cars, the money the glamour, but instead living life with love, laughter and compassion. While physically they have “given big”, the soul of the ALS spirit seems to shines bigger and brighter each day they live, breathe walk and talk.

May is National ALS Awareness month. One of our PALS is working to raise awareness in a big way. He is going to ride his wheelchair from Florida to Washington DC! You can check out his “giving big” spirit at http://www.rolloverals.org/ Most days, everything about ALS is hard. Maybe with your help, we could have one day, where things seemed a little easier.
Thank you so much for your time.
Jenny Gore Dwyer