Vets Told they had Lou Gehrigs Disease

iVillage Member
Registered: 08-30-2008
Vets Told they had Lou Gehrigs Disease
13
Tue, 08-25-2009 - 7:42pm
 1,200 veterans wrongly told they got fatal disease

AP
Published: August 24, 2009


CHARLESTON, W.Va. (AP) - At least 1,200 veterans across the country have been mistakenly told by the Veterans Administration that they suffer from a fatal neurological disease.


One of the leaders of a Gulf War veterans group says panicked veterans from Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming have contacted the group about the error.


Denise Nichols, the vice president of the National Gulf War Resource Center, says the VA is blaming a coding error for the mistake. 


Letters dated Aug. 12 were intended to notify veterans who have Lou Gehrig’s disease of disability benefits available to them.


Calls to the VA were not immediately returned Monday.


Lou Gehrig’s disease, or ALS, is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.


http://www2.nbc13.com/vtm/news/local/article/1200_veterans_wrongly_told_they_got_fatal_disease/88686/

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iVillage Member
Registered: 03-18-2000
Wed, 08-26-2009 - 8:07am
TG the mistake was caught & rectified.
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iVillage Member
Registered: 02-19-2008
Sat, 08-29-2009 - 8:55pm
Wonder if they sent the VA Death Book along with the letters?
Community Leader
Registered: 04-05-2002
Sat, 08-29-2009 - 9:30pm
Ideally, if someone is told he/she has a terminal, progressively worsening disease like Lou Gehrig's disease, the person should get a personal consult on what happens as he/she nears the end of life, eg. what type of drastic measures the person wants, how long/if life support should be used, what type of pain relief is desired, whether to die at home on hospice care or in a hospital/nursing home, etc. Not doing so would be ignoring the elephant in the room and giving the person no choice. Giving it a name that one perceives to be negative, eg book of death vs a living will, doesn't change the issue.










iVillage Member
Registered: 03-26-2003
Sun, 08-30-2009 - 12:03am
My mom did have Lou Gehrig's and she didn't have a directive....this was back in 1980 when she was first informed she had this horrible illness.
 
iVillage Member
Registered: 03-18-2000
Sun, 08-30-2009 - 10:41am

"I didn't want her to suffer anymore....for that reason I have a directive, I don't want my children to have to make this decision...it is mine and mine alone."


Wise decision.

 


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Community Leader
Registered: 04-05-2002
Sun, 08-30-2009 - 11:04am
Sorry to hear about what you went through. It must be the hardest decision to make and you're so emotionally involved. I think it's smart that you've decided what you want instead of making your loved ones try to guess. I don't understand why people would rather force their family to decide what to do. Ignoring it won't make it go away. Call it what you want, a directive, a living will, a death book or what have you, but give people the option to make the choice themselves. They can still choose to make their families make the decision but don't force everyone do that.










iVillage Member
Registered: 08-30-2002
Sun, 08-30-2009 - 11:47am

I have watched what it is like when someone has no directive in place. I have a friend whose mom was severely burned in a fire and never fully regained consciousness. Her adult



iVillage Member
Registered: 03-23-2003
Sun, 08-30-2009 - 6:35pm

....for that reason I have a directive, I don't want my children to have to make this decision...it is mine and mine alone.


{{HUGS to you!}}


Community Leader
Registered: 04-05-2002
Tue, 09-01-2009 - 1:21pm

This might be one of the best articles I've read about the importance of having a living will. Call it a death will if you want but it's about making choices that you want, whether it's pain relief, how far to resuscitate, etc. but don't push the choice onto others.

http://www.washingtonpost.com/wp-dyn/content/article/2009/08/28/AR2009082803284.html

Nothing to Get Scared About
Living Will Gives Me Peace of Mind
By Ingrid Komar
Special to The Washington Post
Tuesday, September 1, 2009

I am 82 years old, have had a wonderful life and, although there are things I would still like to accomplish, I am not interested in merely extending my life via a much-diminished existence. As a result of smoking for many years, I have chronic obstructive pulmonary disease, or COPD. It is a debilitating disease. I can't walk very far without getting out of breath.

And I have a living will.

My disease is not curable, and it's only going to get worse, so several decades ago I drew up a document specifying exactly what medical care I do, and do not, want in my final days.

Opponents of health-care reform have tried to scare people into believing that the government, by encouraging doctors to talk to their patients about living wills and end-of-life care, will decide who lives and who dies. But the bad news is not that the government will make these decisions for you. The bad news is that you will have to make them yourself, and then make your wishes known to the appropriate physicians and medical facilities.

I characterize this as "bad news" partly in jest, but I can tell you from my experience in putting together my own living will that it is hard to make yourself think about all the possibilities that might occur as your life is winding down and how you want them handled.

The good news is that counseling about end-of-life care would be covered for the first time by Medicare under health-care legislation being considered by Congress. Medical professionals you choose would provide advice and guidance; you would be free to follow or to ignore it -- or not consult them at all.

The issue most commonly addressed in living wills is whether you want to be kept alive via breathing and feeding tubes if there is no reasonable expectation of your recovery. But there are more subtle issues. For example, in my living will, I direct that if I have a terminal illness diagnosed, "no matter what my condition, my health care provider(s) administer such medications and perform such medical procedures necessary to alleviate pain and provide comfort care, even if such medications and/or procedures may hasten the moment of death."

This and similar clauses are necessary to protect your doctor against lawsuits and to relieve him or her of the obligation to keep your life going at all costs. High doses of morphine to lessen pain may hasten death in some terminal patients. I don't want a doctor so focused on keeping me alive that he or she might limit the strength of pain-reliever dosages, resulting in needless pain and potentially considerable expenses as well as possible emotional distress for family and friends watching me suffer.

The proposed health reform legislation would provide reimbursement for seniors to review their living wills every five years, which seems sensible.

Based on experiences during my last hospitalization for COPD, I revised my living in 2004 to specify that I do not want to be treated with a breathing tube, should I have another crisis. In research I did on intubation, I learned that inserting a breathing tube is a difficult and traumatic procedure from which I would anticipate a long and difficult recovery that at best would leave me even more incapacitated than I am now. For me, it isn't worth it. Someone else in my condition might well make a different choice, but this is the choice I have put in my living will for my doctors and family to follow.

My sons were supportive of my living-will directives; far from pushing them, my doctor acknowledged them with slight reluctance. It is possible that when you ask your family to collaborate in the drafting of your advance directives, they will say, "We don't want to think about that!" But the time to think about these matters is precisely when things are pretty normal, when cookouts are the biggest item on the family agenda. It is in a calm atmosphere devoid of the distortions inevitably caused by a medical emergency that you and your family can best make big decisions that will affect all of you.

I hired a lawyer when I first drew up my living will (and an accompanying medical power of attorney, which specifically designates who will make decisions on my behalf if I become incapacitated). These days numerous listings on the Internet offer free guides and forms to help folks with this project avoid incurring legal expenses.

Executing a living will not only ensures that your last days on this earth will be as close to what you would wish them to be. It is also a measure of the consideration you have for your family and friends. Planning for the end of life does not lessen the sorrow family and friends feel when a loved one dies. But I do believe it enhances their ability to make peace with their loss and to move toward acceptance.

We all have to die someday. But unlike billions of people who lived before us, we have a few choices regarding our final days. Why would we not exercise them?

Ingrid Komar is retired and a resident of Washington. Comments: health@washpost.com.











iVillage Member
Registered: 03-18-2000
Tue, 09-01-2009 - 1:37pm
Good common sense article.
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