Banding Together for PALS

2008-05-17T22:09:00.003-04:00

The Tampa Support group says thanks to Ken Patterson for his courageous journey to Washington DC to raise awareness about ALS. Yes the group is actually a little blurry.

2008-05-17T21:38:00.002-04:00

Here is a video of Ken Patterson's courageous trip by wheelchair from Orlando to Washington, DC. The video covers Ken present a wreath commemorating all the veterans that have died from ALS. And then he arrives at the Advocacy Day flagship hotel in Washington, DC.

May is ALS Awareness Month- at least in Florida

2008-05-12T20:27:00.001-04:00

Donate Now | Register for ALS Info | Contact Us

Tell a Friend | Email Preferences

Visit Our Website

The ALS Association Florida Chapter

Florida Cabinet Joins the House and Senate in Declaring May to be “ALS Awareness Month”

The ALS Association Florida Chapter is celebrating another advocacy success. The Florida Cabinet soon plans to echo the actions of the House and Senate in proclaiming May to be “ALS Awareness Month.”

Governor Charlie Crist, along with Florida Cabinet members Bill McCollum, Alex Sink, and Charles Bronson, will make the proclamation in a meeting scheduled for Tuesday, May 13 in Talahassee. Association supporters, patients, and caregivers are welcome to attend the short ceremony. Please meet in front of the cabinet meeting room in the Capitol Building no later than 8:45am.

The resolution will dedicate the month of May to educate the public about the devastating effects of Lou Gehrig’s Disease. Cabinet members hope their efforts will aid the fight against ALS, while supporting patient care and biomedical research.

“This resolution is the culmination of a six week campaign. For the first time, ALS will achieve recognition across the entire state and gain distinction in the minds of state legislators,” Dara Alexander, ALS Association Florida Chapter President, said.

The ALS Association thanks Attorney General Bill McCollum for his support of this resolution and ALS Advocate Ed Kourt for his efforts in meeting with state leaders. As a result of this resolution, we anticipate great success in educating the public, increasing funds for research and patient care, and ultimately taking another big step toward making ALS a disease of the past.

What next?

2008-05-12T14:05:00.005-04:00

We can only hope that all our emails are still wending their way through the desks of the celebrities. One day we may here that one or more of them picked up the ball and will do a segment on ALS. Certainly we generated a collection of stories that will live on telling of living and dying from an "orphan" disease.

May is ALS Awareness Month but so far the only ones who seem to be aware is the ALS community. I have seen nothing in the print or broadcast media, just emails from MDA and ALSA to me.

Ken Patterson should have completed his tour yesterday. Ken's Rolling Over ALS Tour was a courageous action to put some meaning and muscle into awareness. If you are reading his journal on the tour, at least there seems to be one gaggle of folks out there that know of a lone man in a power chair followed by a van and trailer plastered with ALS awareness ribbons. This gaggle slowed down long enough to give this courageous soul that ubiquitous single fingered salute. I say "right on" Ken and Glenda, you both deserve medals.

Maybe we will see a new path or a new campaign growing out Advocacy Days in Washington DC this week. Just getting some news on the ALS Registry Bill will be a bright light of discovery shining through the darkness of any news since December. There were rumblings that some of our fellow PALS are planning a visit to the offices of Senator Tom Coburn, the single roadblock to the ALS Registry Bill to see if putting a face on the disease and the rage and frustration will somehow break through his erstwhile roadblock mentality, and maybe the presence of 500 or more PALS on Capitol Hill will stimulate the other 99 Senators that Coburn is thumbing his nose to show some guts and bring the legislation to the floor for an up or down vote.

Let's see what we hear and what we see come out of Advocacy Day.

Ken Patterson Is Rolling!

2008-04-19T14:00:00.002-04:00

Orlando Sentinel Front Page Feature

I highly recommend all adding encouraging comments to Ken on the Orlando Sentinel story.

When I watched the national evening news last night, I thought that it would be totally cool and appropriate for ABC News to honor Ken as Person of the Week when he rolls into DC. CBS News does a similar concept story weekly called "Assignment America."

Here's the link to contact ABC News --
Contact ABC News
Select "Contact World News with Charles Gibson" to submit a suggestion to honor Ken as Person of the Week.

Here's the link for CBS News Assignment America --
Contact CBS News Assignment America There is a link there to Submit Your Story to nominate Ken.

This is the perfect opportunity to honor one of our heroes whose whole purpose in this ambitious trip is to raise awareness about ALS. He knows the value of some news coverage, so let's try to help him get some national press! In order to get their attention, I think we need to make the messages short and simple... just enough to tweak their journalistic juices to follow Ken's journey.

Keep Posting

2008-04-15T22:07:00.002-04:00

We are doing pretty good with number of stories posted. They all fill in the tapestry of living with ALS as each of our lives are threads woven into that tapestry. Keep the stories coming. If anyone hears from any of the celebrities, please shout it loud right here on the blog.

My mother's story-ALS took her life

2008-04-15T21:28:00.003-04:00

Our MotherMonday, March 3, 2008 By: Nicole Arredondo .Our mother was diagnosed with ALS in Feb 2006. She had gone for at least a year with symptoms from ALS that when undiagnosed. ALS is hard to diagnose, because it can mimic so many other disease in it's early stages. In Feb of that year she was using a cane and able to move around with no other assistance. Shortly after she was only able to walk using a walker or she would fall. She was unable to hold herself up without assitance. Her speech at that time was beginning to slow down and at times vey difficult to understand. By thanksgiving, she had minimal speech and was completely in wheelchair, unable to move her legs at all and little use of her arms and hands. At the beginning of 2007, my mother lost all of her speech and barely able to move her arm out a little and minimal movement of fingers. In the spring of 2007, we had to insert a feeding tube, because of the dramatic loss of weight she was no longer able to swallow without choking. She had to be assisted in every area of daily living and was not able to move at all on her own or even to communicate. By early summer, she had lost all movement of hands and fingers.Our mother died on September 9, 2007. It is ironic, because that was grandparent's day. She loved her grandson very much. She was his "nanna". I tell this story, because I cannot comprehend some days what she went through or why. I cannot begin to understand what she was thinking or even the pain that she endured as her body deteriorated right before her eyes. She was a beautiful and spunky woman of independence. Always had things done perfectly or worked until it was. She loved with all that she had and made sure that everyone was always taken care of. We love and miss her so much. I will be married in November of this year, she will never see me that day...nor will she ever meet my little babies that I will have. But I will be sure that they know who their nanna was and that they will grow up helping to honor her memory and working to save the lives of those living with ALS and those not yet diagnosed.Thank you for listening to my story. God Bless You All.

In loving memory of my mother-Nicole Arredondo in Lexington KY
nmarredondo75@hotmail.com

I Hate ALS

2008-04-13T16:22:00.002-04:00

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

2008-04-11T13:20:00.002-04:00

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

	Digg		Facebook		Stumbleupon
	Reddit		Del.icio.us		Newsvine

[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

2008-04-10T19:02:00.003-04:00

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

2008-04-05T23:58:00.003-04:00

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

2008-04-05T01:32:00.002-04:00

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

2008-04-01T23:58:00.001-04:00

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

2008-04-01T13:04:00.002-04:00

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

All for what?

2008-04-01T12:13:00.002-04:00

Sunday evening, March 30, 2008, my sister Ruth was admitted to the hospice wing at our local hospital to stabilize her meds and move into their hospice house to live out her final days. She was only diagnosed with ALS in January, three short months ago. It is a scary fiery crash.

She signed a Do Not Resuscitate order and will not get the feeding tube that can keep her alive. I guess she is tired of fighting this, and I don't blame her.

I have failed her........I couldn't save her, I couldn't fix "it", I couldn't get what she needed to stay ahead of this.

It is best that I truly learn what that means and let her go........this is my last attempt at ALS advocacy, albeit, it is to surrender.

The only thing that I can hope for now is that someday, ALS will wreak it's havoc on some influential person and their famous family.

Someday, ALS will kill the "wrong person", then something will be done to help people with ALS and their families all over the world who suffer mercilessly with the freight-train-like ravages of this disease.

Dear God; it just makes me want to vomit to even think that........

Pat Harbachuk (CALS, sister) to Ruth Rogers

My sister Ruth went from the photo at the top to the one at the bottom in three short months. It is frightening.

Celebrity Addresses

2008-03-31T15:30:00.005-04:00

As my Daddy used to say, "It looks easy but it ain't." And that explains the methods to reach the four celebrities. Some require you to use a form on their website and the address below will bring you to that form. It requires personal information, so each of you will have to fill them out. I tested it and found that it works fine.

I used a simple cut and past operation. I highlighted the letter I had written and copied the entire text that I wanted to send. Then in each of the forms you merely have to paste that text in the appropriate "Subject" box. It took my entire text with no apparent problem.

Using the forms, it is not possible to send photos. For Ellen, I found an alternate email address that should allow photos to be attached or included.

I also found two snail mail addresses. Oprah clearly states they do not accept snail mail.

So tomorrow is the day to let your emails fly. I got acknowledgments from each of them.

The bad news is that Montel is broadcasting his last live show in late September and will go off the air. They still said my email was being referred to the producers, so all may no be lost.

Good luck my friends and fellow PALS and CALS.

Oprah

http://www.oprah.com/email/reach/email_showideas.jhtml

Larry King Live

http://www.cnn.com/feedback/forms/form5.html?12

Montel Williams

http://www.montelshow.com/mail/

Viewer Services
The Montel Williams Show
433 West 53rd St.
New York, NY 10019

Ellen DeGeneres

http://ellen.warnerbros.com/show/respond/?PlugID=10

http://ellen.warnerbros.com/

The Ellen DeGeneres Show
PO Box 7788
Burbank, CA 91523
Attn: Fan Mail

A Young Woman's Story About Living With ALS

2008-03-31T11:12:00.006-04:00

My name is Kristen. I am a young, energetic, newlywed. I am a dental assistant, certified nurse’s assistant and a nursing student. My husband and I enjoy spending time with family and friends, playing softball and volleyball, hunting, fishing and vacationing in northern Wisconsin. We dream about having a family and growing old together. Our future is bright!

That was me before the fall of 2000 when everything changed. I started walking strange and was losing dexterity in my fingers. After lots of tests and different doctors in February of 2001 I ended up in the Neurology department at the Mayo Clinic in Minnesota. When you’re from the Midwest you know it’s serious if you have to go to Mayo. They don’t mess around. We were told to prepare to spend a week there. They would continue to do tests until a diagnosis was made. We spent less than a day at Mayo and received the worst news and what should have been the best news of our lives. I left Mayo that day with the diagnosis of a terminal illness, ALS, and the shocking news I was going to be a mother. I was 24 years old.

It was a long 9 months. I was given 2-5 years to live. How was my husband going to raise a baby, take care of me and continue with his job as an electrician?

Fast forward 7 year and all I can say is God had a much different plan for our lives and time has a way of working things out. My husband has stood by me through good and bad. We have a beautiful 6 year old son. I started my own business putting 8mm reels, VHS tapes, pictures and slides on DVD. I’ve outlived the 2-5 years I was given. Over all I have a pretty good life. That doesn’t mean me or my family have an easy life. ALS is a harsh and ugly disease that affects the entire family. A lot of people walk away because for one reason or another they aren’t able to deal with the reality of ALS. I am very lucky my Mom was able to retire and become my primary caregiver along with my husband. The only functional movement I have left is my head and neck. I’m also able to speak a little. Otherwise everything is done for me.

One thing people have a hard time with is my quality of life. They don’t understand how I consider what I have to be a good and productive life. I learned long ago not dwell on the losses and be thankful for what I have. I spend everyday watching our son grow. That is my reason to keep going.

My gripe is insurance companies be it Medicare, Medicaid or private insurance. It’s a constant battle to get them to pay for the things I need. I’m fortunate; my dad is very familiar with how the insurance companies work. He keeps pushing until they finally pay. The latest challenge has been getting my electric wheelchair adapted so I can drive it by myself. I have been waiting 4 months for insurance to approve the new parts. In the mean time I only have my manual wheelchair. Which means when I actually get out and go to Wal-Mart my mom has to push me with one hand and the cart with the other. It shouldn’t have to be so hard to get the things we need covered by insurance and my problem is minor compared to some of the horror stories I’ve heard.

We, as a community of people “living with ALS”, need you to help raise awareness about ALS. There is no celebrity who has been touched by ALS to make our disease a household name like Cancer or Parkinson’s disease. Please help give Amyotrophic Lateral Sclerosis a face.

Sincerely,
Kristen Sauer sauergirl@milwpc.com

Madelyn H. aka Lou G. and Me

2008-03-30T17:45:00.004-04:00

Hi, my name is Madelyn and was diagnosed with ALS at the age of 48.

Often referred to as a "princess" i had fun no matter what!

"Do you have a credit card for your purchase..let me run that for you...oops I should try out for the Yankees with a throw like that!" When really I was hiding my embarrassment of how that credit card ended up 50 feet away.

After several times of winging credit cards across the way I went and got my hands checked out..this was in February of 2005...carpal tunnel and ulnar nerve damage in both..hmmm....both...ok lets get theses fixed. Left done first...a ok...now we do right...2 weeks later still no right response..very weak, unable to grasp anything...lets do occupational therapy...6mths in tears the doc says I haven't given enough healing time...more occupational therapy, but changed therapist..within 4 visits the therapists says to me..here is the name of a hand surgeon see him asap. ok..i'm scared...

the new doc had his person do an emg...2.5 hours long head to toes...Both docs called me a day later...and said we have an appointment set up for you for a neurologist. Me and hubby get to our appointment to have doc and a student come in..doc looks thru the file and says "you have Lou Gehrigs disease/ALS... I suggest you get your affairs in order and get shit done fast..oh yeah eat whatever you want while you can...see ya in six weeks as he's walking out the door. Even his student sat their with his jaw open. I immediately sought out a neurologist familiar with ALS.

My grandson was born Sept.7th, I got this dx in Oct..had to put my 13 yr old dog to sleep in Dec and by end of Jan my daughter and grandson ran off with an army guy and I didn't see or hear from her for over 8 months.

Getting out of bed much less going to work were not a priority.

I was born and raised in New York..a Yankees fan since I was knee high to a coke bottle..new all about Lou Gehrig...my hubby and i even had a sports room in our house my side was Yankees memorabilia but I have since taken it down. It became an erie sense of coincidence for me.

In the last two years I have had to give up control, of everything...personal, physical and emotional. I gained a new respect for life and my moto became "Live hard, live fast" and a greater depth of love. My daughter and grandson are back in my life and my hubby/caregiver is the loving man I always new he was. He never new what a checkbook was much less sorting whites and colors was till this event. I refer to it as an event because this diagnosis took our lives as we knew them and never gave it back.

Friends..came and went...family came and waited, for what I have no idea.

Then..what do u mean I cant stay home alone cause I fell....whats the big deal? After 5 falls I agreed. This is where the fun begins.

What do you mean you don't provide coverage for this or that. Who's supposed to help me while hubby tries to work? Yup...I've got family all over, but not here where I am. Why wont anyone HELP ME!

With every hint of a cure, I wonder could this be it, could this be the cure? The one thing that will get me past the 5 year mark....

So I sit here watching everything go by me. Filling my time being as productive as I can and thank God for His arms around me.

ALS and Me

2008-03-30T01:27:00.005-04:00

ALS is a devastating disease that cripples the body by affecting the lower and upper motor neurons. In my case, it has started slowly with weaknesses of my right hand. It has now affected my breathing (with a need for a breathing machine), swallowing of liquids, and some speech. It has also given me leg pain, spasms, a slower gait. It usually strikes ages from 40 to 70. I’m 45 years old, with two teenage boys who still need their mother to drive them around. I use a steering wheel knob to drive my car.

With this diagnosis, I am expected to be completely paralyzed before reaching my death. Prior to this formal diagnosis in late 2005, I worked in hospitals as a respiratory therapist, helping both young and old patients with their breathing issues. It caught me completely off guard when I found out I had ALS and that this disease can actually kill me within two to five years.

I admit the fact that there is no such a thing as a “pretty” death. However, I have come to the conclusion that this disease is like as if you were sentenced to life in prison without the possibility of parole and on top of it, you know that you are going to be executed in a slow, unusual and cruel manner. I sometimes describe the way I feel about my breathing problem as a boa constrictor wrapping around my chest walls, taking away my ability to take a breath.

People with ALS often struggle with the idea that they are going to become completely dependent on their family members. I'm often left feeling guilty about the disease, when I know that there was nothing I did wrong to cause this upon myself. Every day, every week, changes such as losing strength from muscle atrophy, bring on new challenges to adopt. The other day I was so tired and exhausted, I could not even hold a utensil for long, and I had to allow my husband to spoon feed me like a baby.

Imagine! And I ask you to put yourselves in the shoes of an ALS patient. At advance stages, people still can live quite a long time (in many cases extending their lives 10 years plus) if they have an elective tracheostomy, which requires a surgical procedure to open up the wind pipe to go on a full life support respirator machine. Long before this happens, one will also require a feeding tube. The paralysis marches on and overtakes your whole entire body. The only method of communication may be by blinking your eyes. One may then be left in what is called a locked-in syndrome, where he or she will not be able to communicate with the outside world.

I was told that I had a slow progressive type of ALS. However, with this disease, nothing is ever slow enough. I ask you to join me to open up your hearts to gain more understanding with this bleak picture for all people with ALS and the huge challenges that their families face as the care giver. I would like to encourage people out there to gain interest in learning more about this orphaned disease which was first described in 1869 by the French neurologist, Jean-Martin Charcot. Without the development of medications that can halt or cure the disease progression, the chances of my two teenage boys losing their mother before they graduate from college is realistically very high.

Juri Kameda

Martin's Story - An Uneasy Truce

2008-03-27T21:51:00.002-04:00

I will always equate the peak of my career in banking, as the day I was made a corporate officer, with the title of Assistant Vice-President. I knew I had gotten a position through perseverance, struggle and my sense of independence.

Of these three qualities, the one that is most damaged by my life with amyotrophic lateral sclerosis, is independence.

It was somewhere in the middle of 2006, that I was shopping with my wife at a local grocery store. She commented on the fact that I must be tired, as I was dragging around the store. Since I had had vascular problems with my left leg for some time, I mentioned that my foot seemed to be dragging. But she was right in that I was feeling fatigued.

Looking back on it now, I clearly see that particular event was the herald of ALS! Each time I discovered my left foot dragging and felt fatigued over small things, I shrugged it off.

It was the beginning of 2007 when I realized that I seemed to be losing power in my right hand. Naturally, I didn't associate the dragging left foot and a weaker right hand. I bought an exercise training ball and worked my weakening hand with it.

Little by little weakness became more apparent. At about the same time, my cardiologist was concerned over the fact I couldn't do the treadmill during a stress test. Combining that with the weakness in my hand, he referred me to a rheumatologist. That doctor ran a couple of tests, but said she couldn't help me any further. She referred me to a neurologist. Of course all of these referrals took time, and the months were going by.

When I finally got to see a neurologist, he ran numerous tests... carotid doppler, EMG, EEG, blood work, etc. Finally, he told me that in his opinion, I had ALS. When he briefly explained to me what that was, it was as if the floor had fallen out of his office. My wife gasped and I just sat there feeling very cold.

I went home and immediately got on the Internet, finding out all I could. I registered, online, with ALSA and MDA. I ordered all kinds of literature on it. I called my local ALS clinic and scheduled an appointment. I was lucky, in so far as I live only 20 minutes away from New York State's University Hospital were the clinic is held.

Of course, I was now totally positive that the neurologist had made a big mistake. Once I had gone to the clinic, they would set the record straight. But that was not to happen... the diagnosis was confirmed.

I won't go into all the nitty-gritty, as we all know what it is. Suffice it to say, that at this point in my life, my right hand is almost useless and my right arm is atrophied. My left hand is still viable, but weakening and that arm is quickly becoming useless. My left leg, the culprit that was the first to go, now frequently feels like so much dead meat, while my right leg is weakened.

The three qualities that made my career and in which I placed so much trust, have all come to play a part in this unique disease. Struggle is the most obvious and I am finding the simplest things in life, now require a struggle. I cannot get to my feet from a chair without often breaking a sweat. Reaching for my drink at dinnertime requires Herculean abilities. And so each day, becomes a struggle.

I know I must strive for perseverance, for, while the end result is always the same, the knowledge that you are persevering can give one the direction and focus to carry on, which is of the utmost importance.

But above and beyond all, is independence! I have fought, kicking and screaming, against losing my independence. My caregiver-my wife-would ask me, "Can you do this?" to which I would reply, smiling, "Marty can do anything!"

As time goes on, however, and my wife is helping me to walk, to brush my teeth, to comb my hair and to dress, the phrase changed into "Marty can do almost anything!"

I cannot let anything steal my independence, but ALS seems to always have the last word. With that in mind, ALS and I have called an uneasy truce. I am learning how to live with ALS and maintain an "independent dependence".

2008-03-26T11:48:00.004-04:00

This is the letter that I wrote and used while speaking to our Congressman and Senators from Alaska at the ALS Advocacy Day May 2006.

Linda B. (Teal) Kreider
PO Box 1596
Ward Cove, Alaska 99928-1596

May 16, 2006

My Dad; in addition, was a wonderful husband for 54 years, awesome Grandfather, Great Grandfather and Uncle Charles Melvin Teal, Sr. He was born in Falls City, Oregon on March 28, 1925. “Mel” worked as a logging truck driver, yarder engineer and many other positions in the logging industry and then worked in road construction. We moved to Wrangell, Alaska in 1962 where my dad worked with Dick Sykes. In 1963, we moved to the Prince of Wales, Ratz Harbor, and my father worked with Clarence Kramer for several years. When I started high school, my father wanted his children to be in a public school, so we moved into the “town of Ketchikan”. My father continued to work at many different road construction sites throughout Southeast Alaska. My father loved the logging industry, loved working on the front-end loader, and played cribbage any time. He taught all of his kids to play cribbage, and to this day we still all play cribbage and his grandchildren and great grandchildren play!

Dad has four children, two daughters and two sons. All of who reside in Alaska. I watched my parents suffer the loss of my younger brother, Gregg in 1993. On the day of my brother’s funeral, my dad told me that he never thought he would be alive to bury a child of his and hoped that he would never have to do this again. Well, my father will not have to… my father lost his short, but courageous and hard battle to ALS, better known to people as “Lou Gehrig’s Disease”. He passed away on May 16, 2006 at 3:00 AM, Alaska Pacific Time at the age of 81 years young!!

The last time I saw my father, was Saturday morning, May 13, 2006. I went up to the New Horizon’s, a long-term care unit at the Ketchikan General Hospital before I left on my flight to attend the Annual ALS Association’s National ALS Advocacy Day and Public Policy Conference this week here in Washington, DC. Dad and I talked earlier about me going. He was so proud of me; he wanted his body to be donated to research for ALS. He said that this disease needs to be stopped! He told me to “give them hell honey”. I kissed him good-bye, we held each other, and I told him I would be bringing back pictures of me in front of the Lincoln Memorial and other pictures. I told him I would be lighting a candle for him and others at the Annual Candlelight Vigil Monday, May 15. I also told him that I would hold that candle in memory of Lu Tice, my oldest son’s grandmother, who also passed away 2 years ago to ALS. (Grandma Lu Tice also worked in the same logging camp as my father.) My dad smiled and said I could make a difference, “all we can do is try honey; anything is worth a try”.

I really did not want to be so far away from him. Dad was “diagnosed” in January 2006, just 4 months ago, although he was having symptoms in October 2005. Dad’s last day to “walk on his own” was November 4, 2005. He used a walker for a month or so, then to a wheelchair. Because of Medicare regulations, he was not eligible for Home Health Care at that time. They said, “Just because he chooses not to go down the 18 stairs, and be lifted by several of us, he is not eligible for home health care”! We took my dad south to the Swedish Medical Center for appointments, 6 specialists, who ruled out all other disease that COULD be causing all the problems. However, the doctor’s best diagnosis was “it appears to be a lower motor neuron disease”. That was it… My dad’s comment was “at least I am 81 not 51”, and “I have had a great life, done all the things I have wanted to do, I am happy with my life, it’s complete”. I knew then that we had a fight on our hands.
There we were, my dad and mom, and me… standing there…with the look of “where do we go now? what do we do? We had been in Seattle for almost 2 weeks. My sister in law gave us passes to come down to Seattle. My father believed that Medicare was assisting in the trip or he would have never gone. We stayed in hotels, spending well over $3,000.00 in food and accommodations and transportation. Medicare did not reimburse for travel and accommodations even though the services that my dad needed were not available in Ketchikan. The trip down was worth it, we needed to know what it was that dad had. It was not a definitive diagnosis, but a start. We signed up on ALS’s website, got our books for patient, caregiver, family member and for the physicians in Ketchikan, so they could have some resources too. Great information and wonderful resources. Well, my best description of that is: It is Christmas Eve and I am looking at an instruction book on how to put together a huge dollhouse in less than 2 hours! ....Everything that I read was overwhelming. No chapter or support group in Alaska to contact. We were lost. We moved my mother and father out their home for the last 16 years into my family’s home on February 18, 2006, so that dad did not have to have any stairs to maneuver with the wheelchair. The wheelchair he had was a loaner from a friend. A prescription for a custom-made wheelchair was given to the local healthcare equipment distributor, as my dad is 6’4”. The chair he had was made for someone about 5’ or less. It took more than 5 weeks to get this chair and when it was delivered, it was the exact chair of what he already had. Dad told him to take that back and get what his physician ordered. I called the company myself. I was told, “that is all I GET REIMBURSED FROM MEDICARE”, I told him to repeat what he just said, and he said it AGAIN. I told him that was fraud...that my father was to have a chair that fit HIM. I told him I did not care what it cost, that my dad needed a chair that fit him and to get it now! It took another 2 weeks and we got it. About 2 weeks later, my father needed to have a hospital bed. The story on the hospital bed was pretty much the same “can’t have a larger one, as Medicare doesn’t pay for a different size”. My father was so uncomfortable, his feet hit the footboard, and we had to move him and the mattress up several times a day, as he would slide down. The mattress had to be replaced as it “fell apart”, the motor to the bed fell off, and it had to be replaced. Yet, the company still refused to get a bed for a person over 6’ tall as the company said “Medicare doesn’t pay for this; this is all that is allowed”.

On May 4, we had to have the ambulance take my father to the Ketchikan General Hospital. He was having difficulty with his bowels. He was in so much pain, I have never known my dad to cry, and he cried. He was admitted into observation, as “Medicare doesn’t recognize this as medically necessary treatment or condition to be admitted for long-term care”. My father had not had a bowel movement in 3 days. The doctors and nurses had to physically reach up and remove the feces. This went on for a couple of days, making sure there was a male nurse with long fingers to assist in this! Dad was humiliated, embarrassed, etc. We got my father into long term care, not sure what happened paperwork wise, but he got to go into a nursing home. He had lost use of all his back muscles. Swallowing became harder and then, breathing was becoming difficult. He was receiving oxygen, but was not put on ventilator. He did not want to live that way.

I attended the Candlelight Vigil Monday evening. I received a call a few hours before the vigil and was told that my father had taken a turn for the worse, and had developed pneumonia. His doctor told me that he and my dad had spoken earlier about me and the he did not want me to come home. He wanted me to continue doing what I came to do and so I did. During the vigil, I held my cell phone out, my sister put the phone up to my dad’s ear, and he heard the music, smiled, and nodded his head. He knew I was there. I told him I was looking up at the Lincoln Memorial and with the Washington Monument at my back and candles were lit for him and all others with ALS and those who have lost their courageous and hard battles to ALS. I cried and cried; my fellow advocates were there to hold me and I felt so selfish in my crying over my father’s dying as one of the ladies I was standing with has her husband at home who has had ALS for over 10 years.

I promised my dad and my family that I would attend and stay throughout the session and make my journey to Capitol Hill and, here I am to encourage and plead for you pass the ALS Registry Act (H.R. 4033/S.1353), legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide, ALS registry. This ALS Registry Act would help identify the incidence and prevalence of ALS in the US and collect data, which is urgently needed for ALS Research, disease management and the development of standards of care. A National ALS Registry will also promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.

Also, please support ALS specific research at the Department of Defense’s (DOD) Neurotoxin Exposure Treatment Research Program (NETRP). Currently, there no funding appropriated to the NETRP is used to conduct ALS specific research despite the fact that studies repeatedly have shown the military personnel are at a greater risk of dying from ALS than those in the general population.

Linda (Teal) Kreider, daughter of Charles Melvin Teal, Sr.

R's Letter to Oprah, Ellen, Larry, Montel...

2008-03-22T06:59:00.003-04:00

I'm always appreciative of comments/edits for the draft. I don't mean to be maudlin, but I thought a dose of reality might convey some urgency. Thanks. R
_____

Dear Oprah, Ellen, Montel, Larry,

This week the folks who read your mail have encountered a barrage of letters from people dealing with ALS. It has not been a wild coincidence. People with ALS support each other online. They share a common frustration and rage at being handed a diagnosis without the medical options that give them any fighting chance. They find ways to try to get the word out about ALS.

If this campaign to engage you to get this public health problem out of the shadows fails, they won’t give up; however, many of their bodies will soon give out. In a few years, many of them will be gone.

So if we don’t get some help now, there will be another group of people with ALS in 2011 who get a great idea to band together and get some help from someone with a major media voice. Most of the names will be new ones. The letter-writers of 2011 are enjoying healthy and productive lives right now. The stories will be all too similar. It won’t stop until we do something about it!

Every 90 minutes an American gets the diagnosis. Every 90 minutes we bury an American who has died from ALS. Please use your voice to stop this deadly revolving door now. It has gone on too long. We Americans can do better. What better place to focus our collective energy!

Sincerely,

Jim's Story

2008-03-21T21:22:00.001-04:00

My name is Jim and I have Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig's disease.

My terminal journey began in 1999 when I noticed ordinary activities such as mowing the grass were completely exhausting. Throughout the summer of 1998 it took 45 minutes to cut the grass, by mid 2000 it would take almost 3 hours because of the numerous breaks I had to take. In the spring of 2001 my wife took on the job because I couldn't walk more than 30 or 40 steps. Numerous doctors had no idea what was happening to me. Late one afternoon my wife suggested she should take me to the emergency room. After a heated discussion off to hospital we went, because she said I looked bad--of all things. She got me situated at the admitting desk and went to park the car. While she was gone I stopped breathing. I awoke 5 days later, permanently on a ventilator. I can truthfully say, if my wife had not been so persistent, I would have died around 5:30pm May 17, 2001.

ALS affects every victim differently. I know of several victims who noticed a slight unusual weakness and within 8 months they were unable to move, not even open their eyes. When the progression is this fast, within a very few months you are faced with making a decision that only "other people have to make." Are you going to be placed on a ventilator? You have no idea whether the disease’s progression will plateau, be a slow steady decline, or accelerate. Financial concerns, family stress, mobility, and medical care are some of the factors on one side of the balance scale with certain death on the other. The two individuals that I referred to--one opted not to vent and promptly died, the other went on a vent to live until his youngest child graduated from High School. This individual was totally paralyzed, unable to even open his eyes for 3 years, but the goal was achieved. As he wished a few months after graduation the vent was withdrawn. This disease does not affect your mind or your hearing but over time your body becomes completely useless. Statistics reveal that life expectancy is 2 to 5 years after diagnosis; however, I have known several victims who passed 6 months from the onset and a few who are still alive over 30 years after their diagnosis. I almost died without a diagnosis. How many are not as lucky as I was? ALS may well be the cruelest disease on earth; this is arguable because there are all too many torturous fatal diseases. Do not think it can't happen to you, as I once did. It is not only ALS that can permanently change your life--there are numerous others including paralyzing injuries.

Why did I create this site? My purpose is to have a website to make the public more aware of ALS. In addition, I want to have an uncensored public forum. Censorship suppress truth and ideas! I am also concerned with our politicians and the way they waste taxpayers' money on pork-barrel projects. We should not pamper them because of their position--they are throwing billions away every year and cutting funds that could benefit the terminally ill and permanently injured. That's my story; please help me prevent it from becoming your story, or the story of a member of your family, a loved one, or a friend!

Be well,

Jim AKA- pigiron308@yahoo.com

Marty Allen's Story - A Real Tough Guy

2008-03-21T21:18:00.001-04:00

Marty Allen was a tough guy. He was an athlete, a U.S. Marine, a recovering alcoholic, a tree doctor and he had ALS. He was my best friend. Marty once said, “Everytime you hear an umpire yell “play ball”, jump in and enjoy life. Play hard and play to win, but after the game, always be willing to shake your opponents hand whether you win or lose.” That's how Marty dealt with his ALS. He jumped in; he enjoyed life, he played hard and he played to win. He tried so hard to fight the ravages of ALS. He tried to live every day to its fullest. He tried to be grateful for what he had instead of mourning what he lost. He tried to inspire others with his attitude and his courage. Marty won all those battles except for the first one – he died from ALS on July 29, 2003 at the age of 55. However, while fighting this last battle, he so inspired his loved ones that they have continued the fight in his name. Marty taught his friends who travelled by his side as he lived with ALS, that just like in baseball, its not about whether you win or lose but how you play the game.

Since Marty lived and died with ALS, I have come to learn so much more about this devastating disease. I am a physical therapist and yet when Marty was diagnosed, I knew NOTHING about ALS. The sad thing is that many health care providers don't know enough about ALS. At one point, Marty was applying for medicare coverage and going before a board of doctors at a local hospital. One of the doctors, hearing his slurred speech, despite knowing his diagnosis of ALS, asked him if he were drunk. Countless times, we had to tell health care providers what ALS was, how to manage his care, and what to expect (as best we knew it). More often than we can count, we had to inform people that ALS affected his body, not his mind. If knowledge is power, Marty's fight against ALS was an uphill battle.

It is ironic that Marty fought, as a U. S. Marine, for the health of his country, worked as a tree doctor for the health of the trees he so loved (sometimes using powerful chemicals), and then at the age of 52, those two things may have contributed to his losing his health and ultimately, at age 55, losing his life – the villain, ALS. He is not alone. Why? How? A state registry would allow researchers to track cause and effect and better be armed to search for a cure or way to control symptoms. Yet few states have instigated this and a national bill is being held up in the senate. ALS is an orphan diseases - little known and little revenue for research. Yet many of our veterans who have survived war time, now face the terror of being twice as likely to face a battle against ALS. In light of increased awareness of environmental issues, ALS should be in the forefront as a disease which truly seems to be the byproduct of environmental toxins. Awareness is key and YOU can help. ALS is a disease that takes young, healthy, vital people and strips their muscles away one by one until they are forced to either live out their days on a ventilator or die of respiratory failure. YOU can make a difference by the millions that you impact. Ted Koppel did that years ago with Morrie Schwartz. Advances have been made since then on “how” people live with ALS thanks to modern technology. Yet, hardly any advances have been made in a cure or public awareness of this horrible disease. As Marty's friend, I promised, I would help make sure to continue his fight against ALS. Please help us to honor those who have died and those who are living with ALS so their battle is not in vain.

ALS Me - Gary's Story

2008-03-21T21:11:00.002-04:00

My name is Gary. I was a school teacher for 37 years in the state of Washington. I had planned to teach one more year, but this thing called ALS forced me to retire.

I had worked at staying healthy for years, and when I turned 60 a couple years ago, my daughter assured me that 60 was the new 40. I felt pretty good about that until I started having trouble walking. I went to the doctor and he tested my blood and found that my thyroid was out of whack, so that’s what he treated. It didn’t help; and finally I went to a neurologist who determined that there was something serious going on with me. After seeing a specialist, I was told I had some form of motor neuron disease. Several months later it was determined that I have ALS.

In less than a year, it has effected my walking (I now use a walker and wheelchair), my hands are weaker, my breathing capacity is diminished (I use a BiPap machine at night, and sometimes during the day.) and I recently had a PEG feeding tube put in my stomach.

This has not been fun. It is especially difficult for my wife who has to do so much to take care of me. She even has to do the manly things I used to do, like take out the garbage. Of course there is no more cutting the lawn, (not that I liked that!) So much now falls to my wife. My children and grandchildren don’t quite know how to deal with it either, except they know that I can’t do much with them anymore.

I know there are many diseases that are devastating, but because most people die of ALS in two or three years, it seems to go relatively unnoticed. When my wife or I tell someone that I have ALS, they either give a blank stare, or look very sad because they had someone they love die from ALS.

At present, there is almost nothing that can be done for people with ALS except to treat their symptoms. Rilutek, the only FDA approved drug for ALS does virtually nothing.

No one would wish this disease on anyone; however, it seems that only when high profile people get it or pay attention to it is their any public awareness. It was more than 60 years ago that Lou Gehrig died from this disease that bares his name. What has been done since that time to treat or find a cure?

It is my prayer that by raising awareness, there will be a nation hue & cry to do something about this ongoing yet unknown disease.

My story is just beginning. And they don’t usually last very long. Two springs ago my wife & I visited our son in New York where I first noticed something was wrong. Last spring, I had been diagnosed a month and had a lot of trouble walking, often using a wheelchair. This spring I will depend on one for all my mobility. I pray that I will be able to return in a year.

Some kind of doctors?

2008-03-21T21:00:00.004-04:00

First it was Dr. "Death" Kervokian to raise the image of ALS, now we have another doctor who seems to have the same outlook for sick people. I speak of the infamous Senator Tom Coburn, Republican, Oklahoma who has single handedly put a hold on the ALS Registry legislation in the Senate. He has done this in spite of 73 of his colleagues from both parties having co-sponsored the registry legislation.

In case any of you are traveling to Washington, DC, for Advocacy Day I thought I would post Senator Dr. "Double Death" Coburn's photo just in case you see him around. In fact I would mention our high regard for this guy who is vying to be vice president to McCain's presidency, and ask your own Senators to go around, go over or buy this dude and get the registry bill approved.

Wouldn't it be an idea to consider to post his photo on all our power chairs as we ride around Capitol Hill? The black border and caption seems to reflect his impact on all of us with ALS.

ALS Awareness

2008-03-21T14:02:00.005-04:00

Comments please!

My name is Bill Hamley, I'm 64 years old. I took early retirement in 1998 since retirement benefits were beginning to be cut by the company for which I worked. Since that time I have been diagnosed with ALS or Lou Gehrig's disease. I guess that my story really begins as a result of 9/11. My daughter encouraged my wife and I to join her and her husband in a run/jog/walk 5K Memorial race in honor of a local 9/11 victim. I hadn't run for many many years but felt it was a great cause. The result was that I became hooked on running. During a race on Thanksgiving Day 2003 I started stumbling over
my right foot. I thought I was just tired.

Little did I know that it was the first symptom of ALS. The stumbling continued to happen on occasion. In June of 2004 I fractured my pelvis in a bicycling accident and after recovering from the injury I found that I could no longer run. I couldn't get my legs to move fast enough to run. At that point I thought I just needed more time and the legs would strengthen and I would be running again. That day never came. At that point the stumbling became tripping and falling then just falling without tripping by losing my balance.

After going back to my orthopedic doctor, physical therapy, Lyme tests, MRIs, blood test and EMG/NCS test I was finally diagnosed with ALS. Since at time my balance is almost completely gone. I feel very fortunate that I started running when I did. Running improved my breathing and that is so very important to anyone with ALS. Unfortunately since I chose to retire early and was diagnosed with ALS seven years later I was not eligible for disability. Because of the 20/40 rule the 34 years that I worked and contributed to Social Security did not count.

While in physical therapy a fellow patient came up to me one day and asked me how progress had been made in the treatment of ALS since Lou Gehrig had passed on from the disease. I had to tell him that almost no progress had been made since then. There is one drug available that extends life by 2 to 3 months. Not much time at all when you are given 2-3 maybe 5 years to live. We can put a man on the moon, computers have become a household item but since 1869 when ALS was first identified we have no treatment and no cure. On top of that those of us who chose to serve our country in military are twice as likely as the general population to contract this disease.

This disease has made it necessary to move from our house to an apartment that provides a greater measure of safety for me and frees my wife of the need to take care of yard and snow removal. I grew up not knowing two of my grandparents and now face the fact that my six month old grandchild may grow up not knowing one of her grandparents. The thought of not beginning to grow up is almost more than I can bare.

Please help us bring this disease to the forefront and at least find a treatment so that we can hold out till someone finds a cure.

JUST WOW AND HOW

2008-03-21T07:06:00.001-04:00

Edit

BANDING TOGETHER FOR ALS 2008
BANDING TOGETHER FOR ALS 2008 [Photo]As I read the posts sent to BANDING TOGETHER FOR ALS, I realize how many people be it PALS or CALS that do actually BAND TOGETHER, for one common goal. To get the public awareness of this MONSTER (als).We are all in this together, we support each other the best we can, by helping each other out through every painstaking step, venting, crying, asking, giving solutions, and most of all SUPPORT>Until you experience this MONSTER, you couldnt even imagine the life changes all must take, to make that PALS comfortable, to live a life full of LOVE, meaning, and compassion. Since I have been on the LIVING WITH ALS>YAHOO GROUP, I have experienced a FAMILY of friends that is by far the proudest bunch of PEOPLE, strongest, most sincere that one could ever meet and or associate with. Through this struggle everyday of watching MY BELOVED REGINA, deal with just surving and yet still as most who are dealing with this MONSTER, they show a certain type of courage when one of us CALS, seem it to be too hard to deal with, she just gives me that unbelieveable infectious smile, to somewhat tell me hey hon its ok, REGINAS ability to talk and or communicate is gone, but she somehow someway seems to generate LOVE, and as we all know LOVE is a universal message that needs no signs, just that look from ones eyes can feel the emotion of LOVE<>So I am asking all who experience that emotion from your PALS, to join in get this message heard, let the politicians, the everyday person that takes life for granted, that we as a community of LOVE and despair need to BE HEARD.............GOD BLESS EACH AND EVERYONE OF YOU..........russell cals for MY BELOVED REGINA

ALS Flashback - Katie Couric

2008-03-20T12:51:00.007-04:00

Jenifer Estess-Project ALS-
book "Tales from the Bed"

Today - Katie Couric pays tribute to Project A.L.S. founder, Jenifer Estess. - December 17, 2003

NBC's Robert Bazell reports on Project A.L.S. gene therapy breakthrough - August 8, 2003
HBO documentary produced by Academy Award winner Sheila Nevins.
Katie Couric covers the early impact of Project A.L.S. - July 6, 2000
NBC Nighly News- Project A.L.S. profile - March 1, 2000
Charlie Rose interviews Jenifer Estess - February 16, 2000

POEM FOR OUR PALS

2008-03-20T00:38:00.002-04:00

Piece by piece he faded away
ALS had brought decay
Muscles, nerves all started to fail
He was locked inside his human shell
His brain was sharp, his eyes were bright
His spirit was his guiding light

My undying love only grew for him
My heart ached as he grew weak
Silent tears would roll down his cheek
He fought as long as any man

ALS came out of the blue
And grabbed the strongest man I knew
He did his best, his heart was pure
Our only hope was to find a cure

A lot of people just didn't seem to care
But then again they have never been there
And until you see a loved one shrink away
You don't realize the price they pay

Mervin lost his battle with ALS March 2007 but I will continue the fight

Ginny

This poem was part of a poem Dianne Findly wrote for her husband and I changed some of it and put it in the past tense to use as a Memorial for Cale

ALS - Stealer of Dreams

2008-03-19T21:57:00.006-04:00

Living My Dream

Around the time my ALS symptoms began in October 2004

Not many people get to say they've gotten to live their dream, but I did. Until being diagnosed with ALS in August 2005 I was a flight paramedic/RN. The saying goes, "Never confuse your career with your life." Never have those words rung more true.

My LIFE is one of a single mother of three children, all with disabilities. My youngest child, just 10 years old, still lives at home with me. When I wasn't in the helicopter, ER or ambulance, I was likely to be found at the regional children's hospital with my son, at therapy or in meetings with the school. Time at home consisted of arranging our world to meet the needs of my son's disabilites.

Christopher wearing "Mommy's" Flight suit

As a single parent of children with disabilities, life was always complicated but I have always felt that I was my children's first and best advocate. To be anything less would have felt like failure to me.

While working and raising three special-needs kids, I also squeezed in three college degrees, the last one completed 2 months after my diagnosis with ALS. I must admit that when I look back now, knowing that ALS would change the course of my life so drastically, maybe I wouldn't have gone back to school. After all, while I love learning, the ultimate goal was to improve my marketability and become more successful professionally.

I loved my job and I am honored to have been entrusted with caring for the "sickest of the sick". The best part of flying came when I completed a patient flight and realized that maybe, just maybe, I "made a difference for that one."

When I was diagnosed with ALS, my world was quite literally turned upside down. I went from flying in a helicopter to sitting in my wheelchair in front of the computer most of the day. My son's daily hands-on care is provided by a loving friend and I can often do nothing but sit and watch.

ALS has robbed my son of his advocate, it has robbed me of my career and has robbed society of someone who really did try to make a positive difference every single day. Yet, I am determined to make the best of the new chapter in my life that has been thrust upon me.

Please, help us find a way to stop this stealer-0f-dreams!

Don from Tennessee

2008-03-17T10:55:00.030-04:00

I'm a member of a club that nobody wants to join. The Living with ALS Club.

When my wife and I received the news that I had ALS just over three years ago, we went into a state of depression and shock. We cried in private not wanting to tell anyone, not even our children. Our lives were NOT suppose to play out this way. We were expecting to grow old together, just like our parents and grandparents. And what about our two children? I want to tell you that the past three years have been horrible for my children. The good Lord knows how I have unwillingly subjected my dear children to witness the slow deterioration of my body. The first year we tried our best to keep a positive attitude. My wife went totally organic with food and vitamins trying to slow down this monster inside of me as well as rid me of toxins. I went to alternative healers for the same reason. At that time I could still walk and talk, but by the second year I couldn't walk. I had to step down from management at FedEx and then ALS forced me to quit my job and go on disability. No more playing sports or going fishing with my children. By the third year I couldn't talk or use my arms. Now I cannot cheer or clap at my daughter's basketball games because this disease took away my voice and hands. I can only smile. I cannot attend any of my son's Boy Scout campouts. He has his sights set on making the rank of Eagle, just like I did. I don't know if I will live that long to see him earn it. I have become a bystander instead of an active parent. I was told all my life that I would make a good father. I loved raising our children with my wife because we agreed on almost everything when it comes to parenthood. We're so darn proud of our children. They both have excellent study habits and are self motivated. Both are Honor Roll students.

I came from a family that hugged and kissed. Not just on special occasions, but all the time. Now it takes so much energy to take care of me, there is no time for affection. I overheard my daughter say "Do I have to?" when she was asked to give me a hug. I don't let it get to me, she always speaks her mind. I was forced to turn over all my husband and father duties to my wife and teenage son. Such as the management of money, automobiles, yard work and cooking. The saddest part is knowing that as my children grow into adults, their memories will fade and they will NOT remember the love that I gave them and the absolute joy of raising them to be the best that they could be. I also think that they will forget many of the adventures (fishing, camping, swimming etc.) that we had. Instead they will remember their Dad in a wheelchair and a hospital bed unable to communicate except with a talking machine.

Probably the most significant aspect of my disease is the fact that my wife has become my caregiver. After my wife took care of her dad who died of lung cancer a few years ago, I became ill. She said to me in private that she didn't know if she could go through taking care of another terminal diseased person. Well it's been three years and she is totally burned out. I try not to be a burden but the daily care of me is getting more difficult. Soon I will be totally paralyzed. I thank God that my wife has such a large family. her mother and five brothers and sisters, that live close by. Plus my family visits from Colorado when they can. My mother is visiting right now. I know my wife appreciates the extra hands and moral support.

Everyday I sit and wonder what I should have done in my life to prevent this horrific disease? If I could turn back time, what would I do different? My extremely compassionate neurologist doctor and the ALS Association taught us how to have hope. I definitely know that there is a treatment and possibility a cure on the horizon. I just hope that when it is discovered, I will be able to take advantage of it.

So I'm asking for you to give us PALS and our caregivers some multi-media visibility desperately needed to help researchers find a treatment or cure for ALS. As well as the establishment of the National ALS Registry.

Sincerely,
Don Taylor (Don from Tennessee)

Glenda's letter

2008-03-16T21:21:00.001-04:00

I am 36 years old, a wife, mother, sister and daughter…I am proud of my role in each of these titles, however the role in which I am the proudest is as a “love-giver” to my husband, Ken. When we first met we had the typical dating relationship, as typical as any single parent’s dating relationship can be. Then came the day I will never forget sitting in the parking lot, with the phone in my hand wondering “what is ALS, who is Lou Gehrig, and how can this strong, vibrant man have a disease that will possibly end his life in 2 to 5 years”.

We were young (34 and 38) and we should be able to grow old together, making years of sweet memories with each other. In July 2007, just 8 months after Ken’s diagnosis, I am proud to say I became his wife and life partner. We now have a beautifully blended family in which we share our lives, lots of love and laughter, and a passion for raising awareness for ALS to find a cure. We struggle just as every family struggles with the day to day living with ALS.

Our story is not unique to the fact that Ken is no longer able to do the everyday things that we so often take for granted such as feeding ourselves or even scratching an itch. He has taught me to appreciate every single day for God does not guarantee tomorrow and I now cherish each tender touch that he sometimes has to struggle to give. He has developed the common “ALS accent” which makes it difficult for him to be understood, yet I am thankful for every “I love you” he showers me with, knowing ALS is slowly taking his speech. I am Ken’s caregiver (love-giver) 24/7 yet what I receive is far more than what I give. Spending every moment with my amazing husband can never be enough.

What makes Ken so special is his positive attitude and determination. He is a veteran and spent ten years as a firefighter/paramedic in Florida before accepting his dream job as a Safety Engineer at Kennedy Space Center. He has spent the majority of his adult life protecting and serving his community. It is no coincidence that he has dedicated himself to raising awareness and fighting for his fellow PALS (People with ALS). That is the motivation behind the Rolling Over ALS Tour and I am proud to say my husband will be “Rolling Over ALS” beginning April 19, 2008. More information is available at www.rolloverals.org

One of the things that ALS robs from its victims is their ability to speak, however they still have a message that needs to be heard. The odds for any one person to die from ALS are about equal to the odds of them drowning, it is about time we get out the life preservers and find a cure for this horrible disease by working together and spreading the word about ALS. Please help give back the voice they have lost.

Marcie was diagnosed with ALS when she was only 23 years old

2008-03-16T17:40:00.051-04:00

This is when it first started...

Fall of 1992
Marcie was a junior in college.
She had just turned 22 in November
Her arms were failing her
as she cheered and tumbled.

What if your daughter was 23 years old, a senior in college, about to be out on her own for the first time?

Looking forward to try outs for the Dallas Cowboy Cheerleaders and she learned she had ALS (Lou Gehrig’s disease).

A disease which has no treatment or cure and only 10% of people diagnosed with ALS live more than 3 to 5 years.

Marcie’s life and the life of her family came to a dead stop!

That is what happened to my family and to my daughter, Marcie. A school leader and cheerleader in junior high, high school and the 2 colleges she attended. She had a very active life – running track, being a cheerleader and gymnast herself and then teaching young children gymnastics and coaching young cheerleaders in Arlington, Texas.

August 1994

Summer of Marcie's diagnosis
Note her thin arms

Her elbows started hurting and her arms would not hold her up as she tumbled – something was wrong. Fourteen months later in January of 1994 we got the diagnoses - our 23 year old daughter had ALS – a disease which usually strikes in mid life – 55 is the average age for ALS – not 23. Yet we are learning more and more of young people being stricken with ALS. God has blessed Marcie and our family since we have been taking this journey for 14 years.

Marcie is paralyzed and she cannot talk and has not been able to talk clearly for maybe 3 years. On her 36th birthday she gave herself life by having a tracheostomy – on the true day of her birth - and being connected to a ventilator which breaths for her in order for her to live. And after being vented she was no longer able to make a sound. We use a letter board and a computer to communicate with her. ALS takes everything but your mind.

Marcie can only move her eyes and her eyebrows. We use a letter board when she is not using to her computer. We must point to one letter at a time and she will blink at each letter until a word is formed – very slow but it works. The computer has a camera mounted under the screen which is mounted to her wheelchair – this computer reads the retina of her eyes. This computer has opened her world – instead of just sitting in her room in her wheelchair – asking me to find something on TV, or putting in a DVD to watch or turning off the TV to listen to the radio – she can do it all herself. It has truly helped me and opened her world to a little independence.

My day is spent waiting for her to call using the computer – it is hard for me to get interested in a project knowing any minute Marcie may call and when she does I may be in her room a minute or 45 minutes depending on what she is needing. I am on call 24/ 7 all day and all night – getting up every 2 hours to turn her so she will not get pressure sores. I had to retire from teaching 5 years ago to stay home daily to care for Marcie. She has not been left alone in 10 years – a friend, her Dad or I are always with her. Her dad is here at night and on the weekends so I do not do this alone. And friends do come by to visit but for the past four years her Dad or I are always here with her, even if she has a friend here. Emergencies happen and we do not what her friends to be responsible – at this point usually it is an equipment failure we are dealing with. But equipment is helping her to live (the ventilator).

Marcie is now 37 years old and living with ALS for 14 years. She still spends her days in her room but now she can control her TV, VCR, DVD and her radio. She can do Instant Messenger and send e-mail – she can communicate with her friends and family using her computer which she has had less than a year. She found, ordered and paid for all Christmas gifts for her family using her computer. She leaves the house every other month to go the doctor in Dallas.

So that is her life and ours – living in her room – which is the smallest room in our house but she did not want to move to the master bed room – she wanted to stay in her room which she has had since she was 6 years old. I often wonder what her life and ours would have been without ALS in our life. I

think she would have been married, had children and a perfect house with lots of hand made things inside. Marcie used to sew; making her own clothes, and did all kinds of crafts. Painting a little before ALS took the use of her arms and fingers. ALS does not only affect the person with ALS but the entire family and all her friends. She told someone once she was “stuck between my parents” and she is. ALS has taken away a normal life as she should have had it. As for my husband and myself – we would have never miss an activity of our grandsons but this was not to be our life. Our life is caring for our sweet girl, Marcie.

We have no idea why Marcie has ALS – but we do know it is all in God’s plan and with Him we live.

March 2008 / Written by Linda Gibson / Marcie 's mom / Arlington, Tx lindafgibson@tx.rr.com Blog: http://linda-gibson.blogspot.com/

For Cay

2008-03-16T13:18:00.011-04:00

Dropping by my Mom's house as I did every Saturday around noon or so, I noticed her speech was a bit slurred. 'Mom, you sound as though you've had a couple drinks. You should call your doctor'. That was April of 2005 and the start of my Mother's journey with ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig's disease. On November 29, 2005 she was given the diagnosis for a disease with no known cause and no known cure. On January 2, 2007 she lost her fight.

My Mother was a singer. Old letters from college friends found after she died indicate she had been offered a contract with the Met in the late 40's or early 50's. She never once mentioned this to any of her 5 children. Her ability to sing was, she told me, the first thing to go. A cruel disease, but not one particular about who it picks.

All the literature and research indicate that this is an 'orphan' or 'rare' disease. But how can we be sure when there isn't a repository for information gathered from ALS patients? There isn't a registry to indicate exactly how many people have this disease. Death certificates don't list ALS as the primary cause of death: my Mother's indicates respiratory failure as the primary cause, ALS as the secondary cause.

Please help us advance research and awareness of a disease that remains a mystery more than 60 years after Lou Gehrig said 'I may have had a tough break, but I have an awful lot to live for'. Help those with ALS, who have a lot to live for, continue to do so!

Thank you for your time.

Patty Fuhry

R's Letter to Oprah

2008-03-15T07:07:00.005-04:00

All, I always welcome comments and suggestions for my drafts. Thanks. R
_________

Dear Oprah,

You gave us good t.v. with your production of “Tuesdays with Morrie.”

Please think about the possibilities of “Wednesdays with Ken” and “Thursdays with Betty” and “Fridays with Joe.” Morrie Schwartz gave us wonderful lessons in living and dying. We have thousands of Americans who would like a chance to use more of the living lessons and fewer of the dying variety.

As you well know, Morrie’s disease was Lou Gehrig’s disease and it’s Ken’s disease and Betty’s and Joe’s, too. All these years after Lou Gehrig, it continues to be a medical mystery that forces talented people into making the most of a very short time.

This qualifies as an American public health problem that we’ve failed to address adequately. It qualifies as an American outrage when we consider that our veterans are slapped with the diagnosis at a rate far higher than the rest of us.

Every May advocates gather in Washington, DC, to try to get the ears of our legislators so that we might address the problem that we know as ALS. These aren’t the highly paid lobbyists eating the expensive lunches on K Street. These are Ken and Betty and Joe and families who overcome great obstacles just to get there. Please take a look at http://www.rolloverals.org/ .

In 1939 the disease had a big voice in Lou Gehrig. Unfortunately he and Morrie and almost half a million others have since died from ALS. This is a public health problem without a big voice. Please add your voice.

Sincerely,

Rhonda's letter to TV personalities

2008-03-15T01:44:00.002-04:00

About 10 years ago, I met a woman whose husband had died of Lou Gehrig’s disease – Amyotrophic Lateral Sclerosis (ALS). I remember her recounting a panic call to a friend when she could not get her husband out of the bathtub. I was saddened to think of her husband’s embarrassment as he lay in the tub fully aware and totally unable to move. Her story was a sad one and I remember thinking how lucky I was.

My luck has run out. My husband now has ALS . . . and will die from the complications of this tragic disease. ALS reduces vibrant people to total dependency. The vibrancy, emotion, and intellect remain but the body becomes an unresponsive, immobile shell.

This future is very different than we imagined. My husband is a photographer who no longer has the strength to photograph events (like weddings); he is struggling to make a living doing portraits only. I retired recently and looked forward to motorcycle trips, scuba diving, walking the dogs, and dancing with my husband. Now, he can no longer do any of these activities. It is a struggle for him just to go to the grocery store. I will be his caretaker as long as possible, with weekend help from his children, but caretaking will become increasingly difficult as the disease progresses and his incapacity grows.

On a long-term level, we are frustrated that there is no national ALS registry showing the true number of patients with ALS; a true picture of the extent of the problem would help focus research for a cure.

On a short-term level, we are frustrated that there is no assistance or insurance coverage for the costly items needed to overcome day-to-day obstacles: $20,000 for equipment to add to a van in order to carry a wheelchair; the cost of widening doors and adding ramps in our home so a wheelchair can pass; the cost of modifying the bathroom so that my husband can bathe and get to the toilet.

We are taking this one day at a time, but feel trepidation about what awaits us. Close your eyes and picture yourself in our shoes. Can you help resolve the frustrations all ALS patients face?

See the following website which is promoting awareness of this disease: http://www.rolloverals.org/ .

Sincerely,

Rhonda C. Brodbeck
Caregiver to Mark, Person with ALS (PALS)

SUPPLEMENTARY THERAPEUTIC MEASURES IN AMYOTROPHIC LATERAL SCLEROSIS

2008-03-14T06:57:00.001-04:00

JUST THOUGHT THIS WAS REAL INTERESTING AND JUST MIGHT BE OF SOME HELP SUPPLEMENTARY THERAPEUTIC MEASURES IN AMYOTROPHIC LATERAL SCLEROSIS

Chuck's Letter to TV Personalities

2008-03-13T22:10:00.002-04:00

Here is a draft of the letter that I intend to send to the TV personalities when this campaign kicks off. Since we are using KenSr’s Rolling Over ALS Tour as a focal point, I propose that we start sending our emails to the TV personalities beginning April 1^st.

Dear Oprah,

I am writing you about Lou Gehrig’s disease. I just want to let you know that one of my heroes who has this incurable disease is riding his electric power chair from Orlando, Florida to Washington, DC. He is doing it to raise awareness and to make people know that with their help a cure can be found. His tour, called Rolling Over ALS, can be found on his website, www.rolloverals.org. His courage to do this is amazing. He will be leaving Orlando on April 19th.

I also have Lou Gehrig’s disease or as it is also known, ALS. I am 70 years old and a retired engineer/executive, so I am much luckier than the many that have this paralyzing disease who have their lives ahead of them, many with young children. My retired career as a cruise lecturer came to an end when ALS took my speech away, confined me to a wheelchair and made it necessary to have help breathing as my muscles became paralyzed.

Awareness is so important. I did not know anything about the disease before I was diagnosed in 2004. It shocks me on how many health care workers, including doctors, know little about ALS. It is equally amazing that there is no simple diagnostic test for ALS. It troubling to learn that those who served in the military have double the rate of having this illness than the general public. Why this alarming fact is so, no one knows.

Maybe you can help change this by shining a light on this “orphan” disease. You can make a huge difference for all of the 30,000 Americans now on the path to complete paralysis.

With best wishes,

Chuck Hummer

CALS FOR MY BELOVED REGINA

2008-03-13T07:00:00.003-04:00

Regina was an active, caring person, who lived life to the fullest, involved in everything you can possibly imagine, always helping everyone and anyone, kind, compassionate.

Until that day back in 09/05 Regina fell to the ground, next morning woke up could not speak, thought she was playing, went to doctors after ruling out stroke, lime disease, and others, she was diagnosed in 06/06 with ALS aka LOU GEHRIGS DISEASE.

Regina went from 138lbs to 95lbs instantly, currently on a feeding tube, suction machine, and utilizes a wheelchair. Reginas ability to help herself are now non existent. 24hr care is necessary.

The only outcome for this MONSTER disease ALS, is going to be with the LORD> there is is no cure, not enough people know about this illness, even medical personell are in the dark about it.

I am REGINAS caretaker, her significant other, I will do whatever I have to do, to make her as comfortable as I can. We are fortunate to have a compassionate caring nurse AMBER, who has become part of our family.

We ask that anyone that reads this and the blog, to PLEASE advance the information to others, that maybe the politicians of this great country might look into this illness and do something about it. I ask that in your prayers that you pray that MY BELOVED REGINA is comfortable and free of pain......and that all the people living with ALS have the protective and healing hands of the LORD around them..........God Bless

Mervin Cale and ALS

2008-03-13T00:38:00.002-04:00

Mervin was diagnosed with ALS in March 2004. At the time he was a very muscular 210 lbs and was busy remoldoling our kitchen. In less than 3 years he weighed 139 lbs and could no longer walk, talk, eat or even breathe on his own. The only movement he could control were 3 fingers on his right hand and his eyelids.
This was a man that worked hard all his life. He served the public his entire adult life. He was drafted into the Army at 19 and drove a tank during the Korean War. After the war he was hired as a police man retiring in 1985.

Mervin was born to deaf unspeaking parents and did not learn to speak until he entered first grade. Once he could speak he was the spokesman for his family--at 7 years of age!! From this time on he was responsible to a fault. Can you imagine being so self-reliant and independent your entire life and then in a span of less than 3 years come to the place where you could not even scratch your own nose.

Mervin never said " why me". He wondered if there was something in his past that he may have done to cause this terrible disease to attack him. He had not been exposed to a lot of chemicals, he never smoked or drank to excess. He lived a very physcal life style- always taking the steps and keeping in shape. There were no answers for him.

There is no treatment or cure for this disease so that means there is also no hope. Please help us to spread the word. You never know who will be attacked next--it could be you or a loved one.

Project: ALS Awareness Campaign, TV Celebrity Hosts

2008-03-12T14:28:00.000-04:00

Concept:

Email and letter writing campaign to TV celebrity hosts to raise
awareness of ALS by general public. Objective is have one or more of
the hosts to feature a segment on ALS, preferably by showcasing
several people living with ALS. Campaign will solicit all people
living with ALS and their caregivers to write TV celebrity hosts with
a short letter or email giving a picture of how ALS has affected their
lives.

Format:

1. No form letters (they lack personality and beg to be ignored.)

2. Letters should cover in some order some or all of the following:
•Name
•Age
•Occupation
•Patient or caregiver
•Family situation
•Major impact of ALS on life
•Major frustration or wish
•A single photograph.

3. Try to keep letters to a single page. Long letters lose
readers. Short personal letters are attention getters.

4. Think of casting a bait, you don't want it too heavy and too
big to be of interest or to swallow whole.

5. It is hard to boil down a message into one page but if you
want your story read, the shorter the better.

6. Should the production staff wish to know more about ALS, we
will have a reference to an information page on the internet to which
to refer them when asked.

The stories about the sad stories of PALS aren't getting the job done.
Every sad story needs to target some spark of rage so that the host
or audience can grasp an action item.

Last year at Advocacy Day our group's congressional staff meetings
turned into Queen for a Day misery sharing rather than making a couple
of quick hit anecdotes to bring ALS to life that then ended with a
specific ask.

Every PALS's story needs to hook itself with a potential social or
legislative or medical action item.

Some ideas --

For a young parent PALS -- This disease is turning my children into
caregivers and they are not only losing a parent but also some of
their childhood. How can we fix this problem? Better benefits for
home caregivers would be a start. Programs for children of PALS would
help.

For any PALS -- I was handed a diagnosis with no tools to fight it.
Why in 2008 , over six decades since Lou Gehrig died, have we not
given people some therapy that might lead to a cure. We sent a man to
the moon almost 30 years ago but we still have not addressed this
public health problem.

For PALS who are no longer to work -- I have been a productive
contributor for many years and this disease steals that against my
will. I'm not ready to give up but need great deals of help from
caregivers and technology to continue to contribute. This isn't
cheap. We shouldn't write off PALS, but we need to fund the help they
need to continue to be positive contributors.

For military -- Does my government not owe us all an explanation? (A
bunch of veteran/PALS seems like an interesting concept to me)...

Just telling the story and expecting the host and audience to come up
with the needed action(s) doesn't work (although it should). I think
that every story needs to be crafted with a point in mind that will
specifically ask for an action.

Also, I realize that Oprah is huge and her interest would be
wonderful. She was involved in the production of the tv edition of
Tuesdays with Morrie. Maybe all communications to her need to hook to
that? She's knows what ALS is from Tuesdays with Morrie.

As much as it's about the individual PALS and families, it's also
about a public health problem and a societal problem about how we
respect and treat those who are slapped with a difficult, terminal
diagnosis. We have to help the host and audience make the leap from
individual to the big problem... and it never hurts to leave people
unaffected by ALS to think that they could be next.

Methodology:

1. Target four key celebrity hosts
•Oprah
•Ellen
•Montel Williams
•Larry King

2. Advance preparation to include:
•Widely soliciting participation by PALS and CALS using Living
with ALS, ALS TDI Forum, PLM Forum, ALS Advocacy group.
•Set target date to begin campaign; Idea is to create a
flurry of mail that has individuality and personality to get the
interest of show producers.

3. Begin campaign by email and snail mail. Provide a copy of
submission to blog set up for this purpose so we end up with a full
complement of stories of interest to internet readers.

Let's use Ken Patterson's Rolling Over ALS Tour from Orlando to
Washington, DC, as the constant hook in each of our emails/letters.
His tour starts from Orlando on April 19th and should be the public
interest story to focus attention.

NOW LET'S GET THIS THING GOING!!!

gamboachuck aka chuck hummer

Action Team Members

2008-03-12T14:27:00.002-04:00

First name	Last name	Email address
Chuck	Hummer	gamboachuck@yahoo.com
Pat	Harbachuk	gulfportgal@tampabay.rr.com
Linda	Gibson	lindafgibson@tx.rr.com
Russell	Gomez	brushnirple@yahoo.com
Patty
Kathy	Ball	kathyscat49@yahoo.com
Melanie	Coleman	tazzmel2000@yahoo.com
Jenny	Dwyer	jdwyer1987@aol.com
Maddy
Claudia	Burrows	claudiamedic@yahoo.com
Mike
Don
Rhonda	Brodbeck
Dan
Bobby
Madelyn
Juri
Stacy	Lisk
TJ
Jerry