VA Inadvertently Sent Letters ALS Diagnosis to 1200 Veterans

Comments

1. Glenn says:

   August 23, 2009 at 7:16 pm

   I thought ALS was difficult to diagnose? At least thats what my VA doctor told me. I think I have it, but if I do I am in the early states. I have no idea how long it takes for it to move into advanced symptoms where it is impossible to miss. I cant see how the VA can sent out these letters, unless they have a blood test they aint telling everyone about.
   • DSNurse says:

     August 24, 2009 at 1:17 am

     ALS diagnosing involves a very extensive list of diagnostic testing!
     It is not done by lab work only….you would have been referred to A neurologist and had extensive work up done and your neurologist would have been the one to diagnose you.

     It was a mistake, gulf war veterans that had listed neurological type symptoms that have not been diagnosed or part of the undiagnosed were sent these letters in error.

     If you got one of these letters please email me at DSNurse1@yahoo.com
     Include your contact info, when you received the letter, which Regional office and the person ie Service Manager that signed the letter, which state you are in.

     I will call you and follow up with you.

     Hopefully if you got one of these letters you have been contacted by the person that sent them from your RO. I am here as a fellow gulf war veteran, officer, nurse, gulf war illness sufferrer too.
     I am not on anyone’s payroll!

     Please do not accept this letter from the VA as truth unless your doctor had told you in person and I guarantee you it would have been an extensive work up to get that diagnosis.

     In a study in 2003 40 cases were documented

     At last count there were maybe 65 Gulf War Veterans with ALS. Out of 697,000 plus in theater during 1990-91.

     The VA is aware of this error and more should be coming out this week!

     It was an awful mistake they made and we are holding them accountable for this error. What started out as proactive to reach those with ALS or survivors of those with ALS backfired.

     By a change in diagnostic coding number they sent out a number of these letters reported to be 1200 by mistake!

     Will be updating information for each of you and answering your questions and concerns here!
2. SSG M says:

   August 23, 2009 at 8:58 pm

   I to am a Gulfwar Vet. Not sure if I have ALS or not. I did hear that most or some GW Vets can get this disease. What are some of the systoms? What ways other than a blood test can you tell? Thanks!
   • DSNurse says:

     August 24, 2009 at 1:50 am

     www.alsa.org/als/what.cfm [www.alsa.org]

     http://www.healthscout.com/ency/68/53/main.html [www.healthscout.com]

      

     http://www.ninds.nih.gov/…/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm [www.ninds.nih.gov]

     http://www.ucsfhealth.org/…/lou_gehrigs_disease/…/als/signs.html [www.ucsfhealth.org]

      

     These are good links for ALS information.

     Please remember this is one of the most serious neurological diseases. It is progressive.

     Slurring of speech is one of the most clear symptoms.  Atrophy of muscle size occurs

     Breathing is the biggest problem. 

     Dealing with normal secreations ie spit becomes a problem because the abilit to swallow is affected.

     Visual symptoms of nerve twitching is usually pretty obvious in shoulders and upper arms and can be seen even more as muscle atrophy(size of muscle) occurs.

     Many  more gulf war veterans have been diagnosed with Multiple Sclerosis ie MS and that disease is not as severe, deteriorating, or progressive as ALS ie Lou Gehrig’s.

     And many more gulf war veterans have ill defined, undiagnosed neuromuscular conditions.

     Diagnosing is very complex and involves EMG electrodiagnostic testing and nerve conduction testing(NCV).  Blood and urine studies to look at protein electrophoresis, thyroid, and parathyroid hormone levels(to rule out other conditions with muscle weakness symptoms).  Spinal taps, Xrays and specifically MRI studies, mylelograms of cervical spine, muscle and nerve biopsies, complete and thorough neurological examinations

     Usually second opinions are encouraged.  Neurologists are the ones that are the ones to deal with these examinations and workups.  Some estimate that as many as 15% of people diagnosed with ALS have been incorrectly diagnosed.  Symptoms of ALS and other neurological diseases can mimic and overlap with other medical conditions.  So extensive testing is the normal course of a complete and thorough workup.

     ALS is an uncommon disease 2 cases per 100,000 population per year or 5,000 new cases of ALS in the US per year.

     So please all do not over react to this letter from the VA.  I am available to each of you and will help one on one and anxious to hear from you!  DSNurse1@yahoo.com 
3. Glenn says:

   August 24, 2009 at 1:19 am

   Muscle twitching and weakness, difficulty talking and swallowing. But these can also be symptoms of MS. Basically its a problem with “demyelation” of the nervous system. The myelin sheath around your nerves is kinda like the plastic coating around an electrical wire. So, demyelation is when that sheath starts to erode. Some think its because of squaline in the many, many injections we all got prior to deploying. I took alot of vitamins during the war and have been doing some serious detoxification over the last few years but my health aint too good. Im starting to drift into moderate symptoms of…I have no idea what.
4. DSNurse says:

   August 24, 2009 at 3:15 am

   On Sunday, August 23rd, I received a letter from VARO Winston-Salem
   from Veterans Service Center Manager, K. Pfanzelter. It read, in part,
   "According to records of the Department of Veterans Affairs (VA), you
   have a diagnosis of amyotrophic lateral sclerosis (ALS)."

   As a retired service-connected disabled veteran with active diagnoses
   of PTSD, sleep apnea, narcolepsy, chronic fatigue syndrome,
   fibromyalgia, degenerative cervical arthritis, depression, anxiety and
   panic attacks, receiving this letter was devastating. I was
   immediately depressed and my eyes began to water. Then, I thought, how
   could this letter come from the VA when my PCP has never mentioned ALS
   in ANY of our visits. Then, I reviewed the symptomatology of ALS and
   became painfully afraid and correlated my current diagnoses with the
   symptoms of ALS. I then decided to reach out to one of my veterans
   blog sites to see if anyone else received the letters. No one
   responded immediately, so I searched and found through and article
   written by Denise Nichols of "Veterans Today" that the letter was sent
   out to many veterans inadvertantly.

   My fear turned into immediate anger and reflection. I became concerned
   that if I had received the letter a few days earlier, I may have
   committed suicide in grief. A few days ago, I was depressed and in
   pain from arthritis and became triggered with a panic attack. I was
   feeling down and many thoughts of taking my life passed through my
   mind. The love of my children have continued to keep me grounded.
   However, I thought "what if"; what if I had received that VA letter
   during those thoughts, it may have activated my mind to plan and
   follow through on the act of suicide. I hope and pray no veteran
   received the letter and decided to give in…

   Samuel Hargrove, Veterans Service Officer
   American Legion Post #45, Clarksville, VA
   Member, Rural Veterans Health Advisory Council for Rep. Tom Periello, VA-5
   Service-Connected Disabled Veteran, US Army (Ret.) & Persian Gulf Veteran (’91)

   Note:  I got email from Samuel Hargrove and immediately got in touch with him and talked with him as a fellow gulf war veteran and as one of the nurse officiers that had served in theater and a very active advocate for all of us.  It was good to be able to lower his anxiety by directly connecting with him.  I want every veteran to be able to have someone they can talk with and trust to give them straight answers. 

   I want to emphasis that ALS is one of the most serious neurological conditions one can get.

   I want to emphasis that if you got one of these letters please know that at least 1200 were sent out in error!

   ALS is more of a paralysis type condition because the nerve cells and nerve conduction is affected.  There are symptoms including slurring of speech, difficulty in swallowing and dealing with your spit, or progressive type swallowing problems ie food.  Muscle atrophy (size of muscle) will show up pretty quickly.  One can often see visual nerve twitching in the shoulders and upper arms when you look at the back.  Symptoms can vary by individual.  This is different than MS multiple scelorosis that have been diagnosed in more gulf war veterans than ALS.  And many more gulf war veterans have ill defined or yet to be diagnosed problems involving muscle weakness.  Many other conditions like thyroid abnormalities can cause muscle weakness.  So please all be aware that if your DOCTOR has not told you this is a possibility or referred you for a neurological consult and extensive testing you probably have received a letter in error.

   This is something your doctor would have talked with you about and a very thorough and comprehensive work up done by a neurologist. 

   If you got one of these letters in the last week or so speak up. 

   Hopefully the VA will be responding  Monday in a complete and thorough manner in every way possible.

   It is exactly in the thoughts of Samuel Hargrove that the NGWRC took the lead in getting the first press release out on this situation after we were notified by two gulf war veterans that are very active in the gulf war veteran community.  We had to step forward as fellow gulf war veterans, advocates, and sufferers of GWI when we saw a suspicious situation.  WE do not want to loose one veteran due to an erroneous miscommunication.

   Sincerely,

   Denise Nichols

   DSNurse1@yahoo.com
5. DSNurse says:

   August 24, 2009 at 12:34 pm

   Follow up on this story:
   From our sources, Va headquarters is working to correct the problem.

   The number of letters sent out by a technical error erroneously appears to be limited to 1200 from all regional offices.

   I am reporting that VA is responding seriously to this issue. They do understand the concern that has been addressed on this issue.

   I would also like to state that the number of letters sent out that did meet the need for those with the diagnosis of ALS or to the survivors of a veteran that died with ALS greatly out numbers the letters sent erroneously.

   The overall intent was to reach out to the veterans with ALS or their survivors since the formalization of the ALS regulation. That portion of their effort is to be complemented because these veterans or their survivors that carried the diagnosis of ALS warranted all the help, benefits, and outreach they could access.

   We complement the VA for responding to the concerns that the NGWRC were first to recognize. We at Veterans Today back up the efforts being paid by VA headquarters on this issue and hope to see press releases from them soon.
6. DSNurse says:

   August 24, 2009 at 3:45 pm

   Further update.

   I got a call from my own VA Regional Denver.

   They now have deadlines set in dealing with this issue and are working in a postive manner to call each veteran personally.
   If you got one of these letters….and do not have ALS and had no diagnosis or Doctor tell you that they needed to work you up for the possibility….
   Please let me know
   Especially if you were in Denver VA RO area!

   DSNurse1@yahoo.com
   and if you need just to talk contact me and I will call you back.

   The VA is responding very appropriately now that they are fully aware.
   I and others of your gulf war veterans community and your advocates
   are pleased at the response of the VA at each level today.
7. Jim Davis, Veterans-For-Change says:

   August 24, 2009 at 4:35 pm

   Just another unbelievable mistake on the part of the VA and a truly outdated computer software system with hundreds of “glitches” and no human intervention to verify and/or confirm.
8. dsnurse says:

   August 24, 2009 at 5:23 pm

   I want to clarify here.
   This was due to a change ie Diagnostic code numbers re
   ALS and those gulf war veterans with undiagnosed illness that included neurological complaints.

   Secondly the wording on the letter re you have ALS
   which was stark. And For RO offices to have sent the letter out without appropriate checks and balances from up at headquarters and by a dr.

   The majority of the letters were sent correctly to the true targetted ALS veterans and their survivors.

   They are working this and realize now the concern and are on phones calling every vet that got the erroneous ones which we now believe was 1200 out of the total. WE have successfully alerted our veterans so hopefully they will not jump to worse case and hopefully not one veteran will give in or up due to this error, which is why NGWRC got out their quickly.

   We hope the letters have been stopped. WE hope the VA puts out an official press release as soon as humanly possible because it takes time to get phone contact with each veteran and because some veterans phones may be unconnected, or wrong or changed number. This needs to go online at http://WWW.VA.GOV!!!

   WE want the VA to pay the bill for any veteran that immediately turned to civilian neurological or doctor follow up and the extensive diagnostic tests that are required. That is the right thing to do.
   They also need to facilitate the civilian dr having access to the VA medical file on those veterans.

   They should seek out those 1200 and be sure they each get to neurologist of their choice for the further complete workup that is needed to assure them and to deal with their fears or broken trust!

   They should set up a 24 hour manned phone line specifically to deal with this situation.

   Letters in the future need double and triple review and then review of who is to get each letter if it has such a stark sentence in it of you have ALS. This letter from RO service managers was obviously a mis step but when you are the veteran and not medical background I can understand the reactions that have occurred.

   There needs to be SOP on each step of letter approval to include a Doctors review. Also there should be an employee system ie hot alert to question something like this and to have that trigger a national hold action until resolution of question.

   Each letter like that needs to have a fail safe system of a live 24 hr line phone number and contact person name that can be called directly to question.

   WE need evidence of accountability and responsibility and transparency now.

   And any other suggestions that others may have from the veterans community. Please share your suggestions here!
9. dsnurse says:

   August 24, 2009 at 6:03 pm

   Veteran with ALS fights VA for benefits

   05:40 PM EDT on Monday, August 24, 2009

   By RA/ NewsChannel 36
   E-mai

   Video
   August 24th, 2009Veteran fights VA for benefits View larger E-mail clip More video Search Video: CHARLOTTE, N.C. — A U.S. Army veteran who is fighting for his life is also fighting the Department of Veterans Affairs for his benefits.

   “I’m frustrated with the VA,” said Todd Overgaard at a news conference in Charlotte.

   Overgaard decided to go public with his story, hoping coverage would force the VA to act.

   Overgaard is 45 years old and has ALS or Lou Gehrig’s Disease, a disease for which there is no cure. He has been in a back-and-forth struggle with the VA to get $72,000 for end-of-life benefits that he says he is entitled to in order to make handicapped upgrades to his home in Hendersonville.

   The improvements his family says he needs include a special bathroom and a lift. He says his requests have been delayed and denied after years of trying.

   His wife Cindy said, “The frustration is having to fight for something you know by law they are entitled to.”

   When he was in the Army, Overgaard was a chemical weapons instructor. Since he left the service, the military now recognizes ALS as a service-related disease, making vets eligible for benefits.

   “My job was the years I served,” said Overgaard. “They are not doing their job.”

   The VA told NewsChannel 36 late Monday that the money has now been approved. They blamed the most recent delays on getting plans approved for a door in the basement of the Overgaards’ home.

   The family believes the VA acted finally because they were going public with the story.

   But the VA says that is not true and calls it a cumbersome process.
10. DSNurse says:

    August 24, 2009 at 7:24 pm

    TBO > News

     

    1,200 veterans wrongly told they have ALS

     The Associated Press

    Published: August 24, 2009

    Updated: 34 min. ago

    CHARLESTON, W.Va. – Former Air Force Reservist Gale Reid received a letter from the Veterans Affairs Department that told her she had Lou Gehrig’s disease, and she immediately put herself through a battery of painful, expensive tests. Five days later, the VA said its "diagnosis" was a mistake.

    The Montgomery, Ala., resident was among at least 1,200 veterans who received a letter about disability benefits for ALS, also known as Lou Gehrig’s disease, even though they hadn’t been diagnosed with the illness, according to the National Gulf War Resource Center. Veterans were initially suspicious of the letters, but still went through the agony not knowing exactly whether they had the fatal disease, which typically kills people within five years.

    At least 2,500 letters informing veterans of disability benefits for ALS were sent out, and of those, some 1,200 were a mistake, according to the National Gulf War Resource Center. The wrongly sent letters were supposed to inform veterans of an undiagnosed neurological disorder, according to the Gulf War veterans group, which provides information, support and referrals about illnesses to veterans.

    No one knows for sure exactly how many letters were mailed to veterans treated at VA hospitals and how many were a mistake. VA spokeswoman Katie Roberts didn’t return telephone messages or an e-mail Monday.

    Former Army Sgt. Samuel Hargrove cried Sunday after opening his letter.

    "I can’t even describe the intensity of my feelings," said the father of two from Henderson, N.C. "With so many health issues that I already have, I didn’t know how to approach my family with the news."

    So, at first, he didn’t. Hargrove later discovered the mistake after talking with fellow veterans in the resource center and online, and he became angry.

    Reid was just as upset.

    "I’ve been through a week of hell, emotionally, physically and financially," she said.

    Denise Nichols, vice president of the National Gulf War Resource Center, said her group has received calls and e-mails from panicked veterans in Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming.

    "Our fear was this could push somebody over the edge," said Nichols, who was worried the news could lead already fragile veterans to commit suicide. "We don’t want that to happen."

    Jim Bunker, president of the veterans group, said he talked to someone at the VA and was told the mistake was caused by a coding error. The VA uses more than 8,000 codes for various diseases and illnesses and veterans with undiagnosed neurological disorders, which can range from mild to severe, were accidentally assigned the code for ALS, he said.

    ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.

    Nichols said she suspected something was amiss because some of the veterans she knew who received the letters did not exhibit any ALS symptoms. Hargrove said he became suspicious because the letter didn’t come from his doctor, and Reid said she sought a second opinion even though she believed the letter wasn’t the right way to inform patients of a diagnosis.

    The veterans groups notified the VA of the problems late last week, and the agency was in the process of calling every person who mistakenly received a letter, Bunker said.

    The VA has taken some heavy criticism already this year. In June, Congress questioned the agency over botched colonoscopies at medical centers in Florida, Georgia and Tennessee that may have exposed 10,000 veterans to HIV and other infections. Last month, the VA Medical Center in Philadelphia disclosed that the number of cancer patients receiving incorrect radiation doses had risen to 98 veterans over a six-year period.

    The Gulf War veterans group is urging the VA to reimburse any veteran who scheduled additional tests with civilian doctors. Reid said her tests cost about $3,000, though it may take weeks before she finds out how much her private insurance will cover.

    "We are trying to work with the VA because we realize it was an error and they were trying to do something right for the people who were diagnosed with ALS," Nichols said. "Basically this was a good effort that ended badly."
11. DSNurse says:

    August 24, 2009 at 8:12 pm

    Volunteers complete ALS patient’s dream car
    Jim Matheny     Updated: 8/24/2009 12:55:13 PM    Posted: 8/16/2009 11:31:57 PM  
    This week, a Loudon County man diagnosed with ALS found out how close an online community can be.

    Don Voorhis lives in Tellico Village where the self-described "car nut" has spent the last two years buying parts to build a replica of his dream car, the Ford Cobra.

    "It was 1964 and there was a Cobra in this garage," said Voorhis. "I played hooky half the day and sat in the car, just daydreaming. I’ve wanted one ever since."

    Voorhis frequented the FFCobra message board for advice on building the car. Then Don’s project came to a screeching halt in February of this year when doctors diagnosed him with ALS, also known as Lou Gehrig’s disease.

    There is no cure for ALS, a cruel disease that slowly robs its victims of all physical abilities while leaving the mind intact. The disease essentially leaves patients paralyzed but completely aware of their surroundings, a prisoner in their own bodies.

    As the disease progressed and left Don too weak to assemble his vehicle, the unfinished car gathered dust in his garage. Don decided to return to the ffcobra.com message board and sell his Cobra kit.

    "The generosity of the people on the forum was amazing," he said. "They told me not to sell it and offered to travel here and build the car for me."

    "It just touches your heart," said Cheryl Voorhis, Don’s wife. "I don’t think I can explain how good it makes you feel to know that someone really cares. We both cried like a baby."

    Greg Marsh of Knoxville had built a Cobra kit identical to Voorhis’s and quickly volunteered to organize several weekend "build parties" for volunteers to work on the car. Dozens of volunteers traveled from across the country to help build Don’s Cobra over the course of 12 weeks.

    See previous WBIR story from March 21, 2009.

    "It was really heartwarming," said Don Freeman, a friend of the Voorhis family who also helped build the Cobra. "One guy came in from California to spend three days on the car. They came from everywhere."

    Thousands of people followed every turn of the wrench online in what became a race to finish the car before ALS left Don unable to drive. In recent weeks, Voorhis started wearing a neck brace as his muscles have become too weak to constantly support his head.

    "I figured they were going to need somebody to paint it, so we volunteered our services," said Jeff Collins, owner of Whitby Motor Cars in Greensboro, NC. "All of the guys in the shop really wanted to be a part of this and help Don."

    Once the car was assembled, a forum member from Charlotte, NC, hauled it from Tennessee to Whitby Motor Cars in Greensboro for the paintjob.

    "You spend a few months putting the thing together. Then when it is finally done, you have to hand it to more strangers and say goodbye to your baby," said Voorhis. "It was really tough trying to be patient while they painted the car."

    Collins delivered the car to Voorhis on Thursday afternoon. A crowd of friends and local ffcobra.com forum members gathered at the Voorhis home for the unveiling of the completed Cobra. Checkered flags adorned Don’s yard as he stood with children and grandchildren who traveled from as far away as Seattle, Washington, for the big event.

    "When they opened the trailer and I saw the car, it was just unbelievable," said Don. "It’s just amazing to see this car and know it’s all done and you can drive it. It’s fantastic."

    Don then climbed into the car and sped around the block with Cheryl in the passenger seat.

    "To see Don with his car brought tears to my eyes and a lot of the other guys here," said Freeman. "There have been a lot of people behind this project who were unable to be here and some who never actually worked on the car. But they followed the project every step of the way online and were here in spirit."

    "It’s rewarding to see a project like this come to fruition," said Marsh. "And it’s very rewarding to see the happiness that Don has now that he has got his baby."

    "We’re just going to enjoy this while we can," said Don Voorhis. "And if it gets to the point that I can’t drive the car anymore, we’ll worry about it when the time comes. Right now I’m just so happy and cannot say enough about the generosity of the people who worked on the car. It is truly humbling."

    Collins estimated the total monetary value of donated labor and materials for the project to be more than $30,000.

    Factory-Five Racing manufactures the Mk3 Roadster kit. Factory-Five awarded Greg Marsh its first annual Legacy Award in June for his contributions to the Voorhis project.
12. DSNurse says:

    August 24, 2009 at 8:15 pm

    Financial News
     
    BrainStorm Cell Therapeutics Inc. (OTC: BCLI) has received funding for clinical trials of Lou Gehrig’s Disease

    Rochester, NY 8/24/2009 09:11 PM GMT (TransWorldNews)

     

    BrainStorm Cell Therapeutics Inc. (OTC: BCLI) has secured funding to complete trials for the treatment of ALS. Amyotrophic Lateral Sclerosis (ALS) is also known as Lou Gehrig’s disease. BrainStorm Cell Therapeutics develops stem cell technologies and therapeutics. Phase I of clinical studies is expected to begin in 2010.
     

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    The Israeli Government’s Office of the Chief Scientist (OCS) has given a grant to BrainStorm Cell Therapeutics to help with funding. BrainStorm received private investments as well. ACCBT Corporation has announced an additional investment of about $1 million in BrainStorm in exchange for shares of common stock in the company.
     

    About BrainStorm Cell Therapeutics (OTCL: BCLI)
    Brainstorm Cell Therapeutics Inc. (Brainstorm) is a development-stage company. The Company is engaged in developing stem cell therapeutic products based on technologies enabling the in-vitro differentiation of bone marrow stem cells to neural-like cells. The Company focuses on utilizing the patient’s own bone marrow stem cells to generate neurotrophic factors (NTF) cells that may provide treatment for amyotrophic lateral sclerosis (ALS), parkinson’s disease (PD) and spinal cord injury. The Company’s technology is based on the NurOwn products, an autologous cell therapeutic modality, consisting of the extraction of the patient bone marrow, processed into neuronal-like cells and re-implanted into the patient’s muscles or brain.
     

    Sign up for the free TheCapitalGainsReport newsletter. To subscribe, enter your e-mail address into the frame at the bottom of this press release or visit our website.
13. DSNurse says:

    August 24, 2009 at 8:17 pm

    Derek Walton taking ALS awareness to new heights
    FUNDRAISER: Skydiving senior raises cash
    Posted By J. T. MCVEIGH
    Updated 10 hours ago
     

    Free of his scooter and canes, Derek Walton flew with the birds Saturday, touching down softly in the grass.

    The 65-year-old Barrie resident refused to give into his ALS (Alterial Lateral Sclerosis), and took to the air and back again raising hopes, awareness and a nice bit of cash for the cause.

    Slated as the Jump for PALS (People with ALS), Walton, joined by more than 100 friends, professional football players, cheerleaders, a couple of clowns and musicians, worked hard to bring the end-of-life neurological disease out of the shadows.

    "The is just awesome," yelled Walton as he lay in the field next to his jump master, Canadian parachute team member, and veteran of 3,000 jumps, Lukacs Hatvani.

    "You really have to try it," Walton said to family and well-wishers who rushed over to him as he landed safely on the jump field at SkyDive Toronto, in Innisfil.

    The event wasn’t without its challenges. Bad weather and heavy clouds rolled in just before his 3 p. m. jump, threatening to postpone the event entirely.

    Rain started after, first as a drizzle and then fell harder as Joe Chow, owner of Skydive Toronto, monitor aircraft weather radar, updating the dwindling crowd that the jump would be on hold until 6 p. m.

    Taking advantage of opportunities isn’t something new to Walton, a cancer survivor, and one of a small percentile of ALS sufferers who live longer than the usual three-year diagnosis.

    For more than seven years, Walton and his family have faced down ALS, so a little rain wasn’t going to deter him.

    Earlier in the afternoon, speakers had their chance to talk about the jump to the crowd of friends, health-care providers, and members of Walton’s ALS family.

    Barrie MP Patrick Brown, who has known Walton for more than six years, brought a certificate from the government before adding his own thoughts about Walton’s courage.

    Advertisement
    Likewise, friends read a letter from Walton’s neighbours at the condominium complex he and his wife, Diane, live, that was left in a basket at their front door Saturday morning. Citing his character and compassion, neighbours had quietly left more than 40 cheques for the cause.

    Looking to raise $100,000 for his own foundation, Walton announced a preliminary total of more than $81,000 raised, with pledge sheets and the totals from a silent auction still to come in.

    ALS, better known as Lou Gehrig’s disease, is a neurological disorder that causes the body’s neurons to stop working, essentially paralyzing muscles and organs.

    On average, a patient dies within three years of diagnosis, however, there are rare cases where life expectancy can be extended to 10 years.

    Approximately 3,000 Canadians are fighting the disease annually.

    Affecting such small numbers of patients nationally, Walton feels there isn’t enough money being directed towards finding a solution to the disease, or some of the other similar maladies, such as Multiple Sclerosis or Muscular Dystrophy.

    "We don’t have a Michael J. Fox (the Canadian actor/spokesperson with Parkinson’s Disease) because we don’t live long enough to have one," Walton said. "That is why an unknown like Derek Walton from Barrie, Ontario is doing this, to try and bring attention to us."

    Throughout the afternoon, Walton looked remarkably calm, although some of the crowd didn’t. Nervous smiles tightened as he and his wife took the trip to the airplane waiting to take him and eight other jumpers up.

    Smiles became tighter still when two small planes that had been ferrying another parachuting organization up into the sky were quickly brought down and tethered to the airfield.

    The sun shone from the west, but black clouds were forming in the east. Gasps were heard when thunder rolled from the darkness as Walton’s plane climbed to 12,500 feet.

    Looking up into the skies, tiny parachutes came into view. As they got closer, a hand waved to the relieved family gathered below. And, within a couple of minutes, Walton drifted softly back to earth.

    Surrounded by his grandchildren and friends, Walton looked up with a huge grin and said, "I told Joe that I would bring at least 50 more jumpers. Whose next?"
14. DSNurse says:

    August 24, 2009 at 9:52 pm

     

    Author: Department of Veterans Affairs

    VA Web Site for ALS Information: http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1583 [www1.va.gov]   

    Headline: VA Issues Statement on ALS Letters

     

    August 24, 2009, Washington, DC – In our efforts to keep Veterans informed of their expanding eligibility for benefits, the Department of Veterans Affairs (VA) sent notifications to Veterans with amyotrophic lateral sclerosis (ALS) for disability compensation benefits from the VA, outreach letters were sent to 1,864 veterans and survivors last week.  VA has since been contacted by a small number of these Veterans who do not have ALS, but were mistakenly sent the ALS outreach letter.  VA is immediately reviewing the individual claims files for all the recipients of this letter to identify those who received the notification in error.  VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter and express VA’s sincere apologies for the distress caused by this unfortunate and regrettable error.  Recipients of this letter are encouraged to call VA at 1-800-827-1000 with any questions.

     Veterans Wrongly Told They Got Fatal Disease
    Veterans Diagnosed With Lou Gehrig’s Disease
    P.J. DICKERSCHEID, Associated Press Writer
    POSTED: 10:57 am PDT August 24, 2009
    UPDATED: 5:31 pm PDT August 24, 2009
     Email  Print
     Comments CHARLESTON, W.Va. — Former Air Force Reservist Gale Reid received a letter from the Veterans Affairs Department that told her she had Lou Gehrig’s disease, and she immediately put herself through a battery of painful, expensive tests. Five days later, the VA said its "diagnosis" was a mistake.

    Letters were sent to 1,864 veterans about disability benefits for those with ALS, also known as Lou Gehrig’s disease, and a "small number" have contacted the VA indicating they received the letters in error, VA spokeswoman Katie Roberts said Monday night.

    The National Gulf War Resource Center said Reid was among at least 1,200 veterans who received the letter, even though they hadn’t been diagnosed with the illness. Veterans were initially suspicious, but still went through the agony of not knowing whether they had the degenerative disease, which typically kills people within five years.

    The National Gulf War Resource Center said at least 2,500 letters informing veterans of disability benefits for ALS sufferers were sent, with almost half — some 1,200 — a mistake. Those who received the letters have undiagnosed neurological disorders, according to the Gulf War veterans group, which provides information, support and referrals about illnesses to people who served in the military.

    No one knows for sure exactly how many letters were mailed to veterans treated at VA hospitals and how many were a mistake.

    "VA is immediately reviewing the individual claims files for all the recipients of this letter to identify those who received the notification in error," the VA said in a statement Monday night.

    Former Army Sgt. Samuel Hargrove cried Sunday after opening his letter.

    "I can’t even describe the intensity of my feelings," said the father of two from Henderson, N.C. "With so many health issues that I already have, I didn’t know how to approach my family with the news."

    So, at first, he didn’t. Hargrove later discovered the mistake after talking with fellow veterans in the resource center and online. He was angry, as is Reid.

    "I’ve been through a week of hell, emotionally, physically and financially," she said.

    Denise Nichols, vice president of the resource center, said her group has received calls and e-mails from panicked veterans in Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming.

    "Our fear was this could push somebody over the edge," said Nichols, who worried the news could lead already fragile veterans to commit suicide. "We don’t want that to happen."

    Jim Bunker, president of the veterans group, said he talked to someone at the VA and was told the mistake was caused by a coding error. The VA uses more than 8,000 codes for various diseases and illnesses and veterans with undiagnosed neurological disorders, which can range from mild to severe.

    When told about the VA’s statement, Bunker said his group stood by its figures.

    ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.

    Nichols said she suspected something was amiss because some of the veterans she knew who received the letters did not exhibit any symptoms. Hargrove said he became suspicious because the letter didn’t come from his doctor, and Reid said she sought a second opinion even though she believed the letter wasn’t the right way to inform patients of a diagnosis.

    The veterans groups notified the VA of the problems late last week, and the agency was in the process of calling every person who mistakenly received a letter, Bunker said.

    The VA has taken some heavy criticism already this year. In June, Congress questioned the agency over botched colonoscopies at medical centers in Florida, Georgia and Tennessee that may have exposed 10,000 veterans to HIV and other infections. Last month, the VA Medical Center in Philadelphia disclosed that the number of cancer patients receiving incorrect radiation doses had risen to 98 veterans over a six-year period.

    The Gulf War veterans group is urging the VA to reimburse any veteran who scheduled additional tests with civilian doctors. Reid said her tests cost about $3,000, though it may take weeks before she finds out how much her private insurance will cover.

    "We are trying to work with the VA because we realize it was an error and they were trying to do something right for the people who were diagnosed with ALS," Nichols said. "Basically this was a good effort that ended badly."

    Copyright 2009 by The Associated Press
15. Kathlyn Stone says:

    August 25, 2009 at 2:23 pm

    Today I received an email from a Vietnam Veteran saying they had received an ALS diagnosis yesterday. I’m a health and science writer and have published articles about veterans and ALS and agent-orange related illnesses.
    I referred him to this web page. Who can people call at the VA to get a quick answer?
    Thanks.
    Kathlyn Stone
    http://www.fleshandstone.net
    • DSNurse says:

      August 25, 2009 at 6:28 pm

      Kathyrn, they can email me at DSNurse1@yahoo.com

      Sincerely,

      Denise Nichols
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