My Friend With ALS, He Died Quickly.
This Fall, Congressman Alan Grayson (D) of Florida said, "If you get sick, America, the Republican health care plan is this: Die quickly. That's right. The Republicans want you to die quickly if you get sick."
He's right. Although I'm not sure it's the Republican plan, they don't seem to have one at all. I think the insurance companies sure want us to die quickly though. I've had it up to here with them. This month alone we saw a case of denying coverage to a child who was too "fat" at four months of age. And then to a child who was too "skinny" at two years of age. Want to know who's uninsurable? Remember the old Armour Hot Dog jingle? "Fat kids, skinny kids, kids who climb on rocks. Tough kids. Sissy Kids. Even kids with Chicken Pox."
In December of 2007, my dear friend Jim G. was diagnosed with Lou Gehrig's disease, ALS. He died early Sunday morning the 27th of September, in his wife of 29 years' arms in their bathroom. Perhaps he had a heart attack or stroke and fell. Or fell and then had a heart attack or stroke. His legs had withered to mere spindles and his left diaphragm was paralyzed as the disease progressed.
Jim and his vivacious wife Peggy personified the American dream. From humble beginnings living in a trailer in upstate New York as young newlyweds in 1980, Jim climbed the corporate ladder, while Peggy stayed home to raise their two children.
By the time Jim had turned 50, their kids had left the nest, and their nest egg was more than adequate. They traveled, dined out, drove fine cars, enjoyed a country club life. It would have been easy to envy them, since my husband and I have three kids with severe autism and have endured three job losses in six years. Our nest egg is is long gone. But Jim and Peg were good people, so it was hard to feel anything other than love for them. When my two older girls were diagnosed with autism in 1999, Peg brought their then 14 year old son Jimmy to our house every week to volunteer in our in-home therapy program. I'll never forget that.
Jim left a Fortune 500 company a few years ago, and joined a small, privately owned specialty paper company in Cleveland. Then he got sick. And then he learned what happens to people who get sick in America.
1) He had an incurable disease with no approved treatment. He was sent home to atrophy, asphyxiate and die.
.
2) He learned the vest he needed when his diaphragm gave out and the machine he needed to take in air at night cost thousands of dollars - and insurance only covered a small portion.
3) He found alternative treatments at Patients Like Me - none of which were covered by his insurance, much to his shock. He spent tens of thousands of dollars to prolong his ability to hold his wife's hand, to push his grandson's stroller, to walk across the family room to turn on the TV.
4) His small company didn't have disability insurance. Or much of a conscience. They withheld his bonus. They cut his pay. They dragged their feet signing his paperwork. They did not offer COBRA. They made his life hell and increased his already unbearable stress.
On the 24 th of September, his company agreed to pay back some of the expenses Jim had incurred because of their actions, through mediation. He'd had to hire an attorney to get them to do right by him. I'm sure that cost a pretty penny too. On Sunday morning his heart gave out, and he died.
At the end of his life, Jim was paying $850 for his own insurance, without prescription benefits. Peggy was unable to procure private insurance due to a pre-existing condition. She's now a 50 year old widow without health care, but with enough assets never to qualify for Medicaid in Ohio. It's a long time before she turns 65.
Jim died just as the disease was overtaking the slowdown the alternative treatments had offered. He died before he needed round the clock nursing care and a hole in his throat to breathe and a machine to speak for him - all of which would have emptied the nest egg he'd built for Peggy over decades of honest hard work.
You did the right thing, my friend. You died quickly. If only that weren't the only option in America.
Rest in peace, Jim. I love you.
Kim
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wx101 let the record show that I as a person who has ALS currently enjoy the benefits of 2 "nationalized" health plans. Medicare which kicked in immediately after diagnosis and I am 65, and the VA. I made this point in another post. I cannot think of two better examples.
EDIT of previous post
wx101 let the record show that I as a person who has ALS currently enjoy the benefits of 2 "nationalized" health plans. Medicare which kicked in immediately after diagnosis and I am NOT 65, and the VA. I made this point in another post. I cannot think of two better examples.
Read more at: http://www
Sorry to hear this, but blaming the insurance companies for desiring and taking actions to make a profit is the wrong culprit. Not to say a company can't have a heart, but companies will almost always make the decision for the bottomline, and not the heart.
Our system has devolved away from us, the consumer, and we have allowed both insurance, which should have always been catastrophy, not preventative, and our government programs to artificially inflate the market well beyond what the means of the normal consumer. Couple that with our steep regulations, and our torte laws, and you have a mix for... well what we have today.
I genuinely wonder if we had a government system in place long enough for the system to have somewhat atrophied, and the innovations to have decreased because of the lack of incentive, would the care have truly been there. I know the standard arguments on the board, but I genuinely wonder. There are, whether you admit it or not, certain fundamental advantages and disadvantages when you nationalize health care systems.
Nothing in the end changes this sad story - my condolensces for you and your friends.
Keep your tips up. [skiing]
Kim, I can attest to what a wonderful friend and advocate you are! Your strength and endurance amazes me always. I'm so sorry for the loss of your friend and outraged by the horrendous health care system that abandons those in Jim's situation. It is beyond sad! My heart goes out to his family and to yours for his passing. Much love...
To Sheldon 101, it is unbelievable that you would take this post and this incident to market your agenda. This is an incredilby human, tragic, real life story that deserves thoughts and sentiments all on it's own. Kim is talking about her friend, his life and the tragedies of what happened when he fell ill from a disease that has no treatment. Your commentary is irrelavant and distasteful.
My grandmother died of ALS 3 years ago this coming Sunday (which, coincidentally, is also mine and my wife's anniversary). Her last 3 years were painful for me to watch. It began in her throat; she could talk, but her vocal cords would give out, so she would alternate between speaking normally and whispering. Then, it progressed to the point that it took away two of her favorite things in the world; the ability to talk (and oh, she loved to talk), and the ability to eat. I must say, though, that she died the way she wanted to; peacefully in the arms of the man she had been married to for over 50 years.
I wish they would have tested her blood. I'm aching to know what her mercury and metal levels were like.
Beautiful and sad. So very sad.
Kim, another beautifully written piece. What a heartbreaking story. My thoughts and prayers are with Jim and his family...a
Kim - again, a breathtaking piece.
I'm not sure how a healthcare piece turned into vaccine posts...bu
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It turned into a vaccine post because Sheldon works in the industry and wants sure that the topic is included in a favorable light on certain bloggers posts. I am one of those bloggers. Comments on blogs are what make the posts interesting and bring in readers, so I just go with the flow. Thanks. Kim
OFF TOPIC COMMENTS
Posting comments on vaccines in blogs where it isn't appropriate is off-topic commenting and subject to sanctions. i haven't done that. My first and rather cryptic comment on vaccine data explained why I wrote the comment:, "Many of the comments here blame vaccinatio
AD HOMINEM
Ms. Stagliano: "because Sheldon works in the industry"
sheldon101: That's a perfect example of the ad hominem fallacy.
John: 2 + 2 = 5 Mary: You're ignorant and stupid because 2+2 - 4 Ok.
John 2 + 2 = 4 Mary: You're ignorant and stupid because you work for Big Pharma. Ad Hominem
If I worked in the industry and if I published original research or claimed any expertise, then my working in the industry is relevant in judging the research or expertise. Since I don't publish original research and I don't claim to be an expert, then saying that my comments should be ignored because I work for the drug industry is an example of the ad hominem fallacy.
There's still the issue of motive. Is there any evidence that I have financial links to the industry that explain why I post rather than what I post? No.All you have is my word that it isn't true. On the other hand, some of those opposed to vaccination (perhaps including Ms. Stagliano) make money selling books, their time and remedies.
As a PALS (person with als) I have spent 2 years researching this disease. Mercury and metal are completely debunked causal theories that led to useless and expensive treatments such as chelation therapy. Desperate people will try and pay for anything. There are today two almost universality accepted hypotheses; protein (giutamate) aggregation on the axon or axonal junction, and the other being oxidative stress. Both are too involved to discuss here. I refer those interested to als.net and patientsli
The FDA decided in March 2009 to allow PALS to use Iplex under the compassionate exception. Even though Iplex failed in an RCT study. And its very expensive. I never passed this on. What do you think?
http://onl
http://en.
From what I have heard and read, Iplex shows no improvement. The interest was sparked by an Italian study which included only 16 participants. The results they reported were enough to excite large numbers of patients to organize and apply political pressure. But talk to any als specialist and find what I say is true. It appears to be safe so you can figure out the rest. If it did work don't you think we would all be on it.
REVISED. Many of the comments here blame vaccination, let alone the risk-free influenza vaccination for people they know or love developing ALS. As far as I can tell thee is no credible evidence to support that position. Merely believing it doesn't make it true.
Anyone can report an adverse event after a vaccination to VAERS. The CDC has online tool to query the VAERS database. Go VAERS and follow the links to CDC-Wonder. Since 1901, only 7 reports have been made to VAERS or its predecssors linking vaccination to ALS. Here are the search criteria and the results.
VAERS --> CDC-Wonder
Query Criteria:
Title: All Vaccines, All Years Search For ALS Reports
Age: All
Date Reported: All
Date Vaccinated: All
Event Category: All
Gender: All
Manufacturers: All
Onset Interval: All
Primary Reports: Primary
Recovered: All
Serious: All
State / Territory: The United States
Symptoms: AMYOTROPHIC LATERAL SCLEROSIS
Vaccine Products: All
VAERS ID: All
Group By: Year Vaccinated
Show Totals: True
Show Zero Values: True
Only years since 1901 with non-zero REPORTS
1 report in 1998, 2000, 2001,2007,2008
2 reports in 2006
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Sheldon - aren't you charming, coming to the defense of vaccinations here.
Kim
Your remarks are not appropriate.
When I'm confronted with something new, such as learning years ago that someone has ALS, I researched treatments. Every where you look, you learn there is an approved drug.
Last week, I spent 3 hours at the ALS clinic. I learned about BI-PAP, feeding tubes and that most with ALS choose not to go on a respirator. Dying at home, at night, without much pain is typical.
H1N1 is particularly dangerous to those with severe asthma because H1N1 goes after the lungs. It's damage to lung function (or pneumonia that results from lessened lung function) that kills those with ALS. This falls H1N1 flu will kill many of those with ALS. They won't show up in the statistics because these deaths will not occur in hospitals.
And for those who think their not getting vaccinated doesn't matter to others, I just discovered a wonderful tool.
http://www
See Kim Stagliano's Profile
And Sheldon, I see in your profile that sayt you specifically comment about vaccines on posts - OK.
And I'm one of your favorite HuffPo bloggers. Aw, shucks, well now I'm just blushing. Or is that roseola?
;)
KS
Sheldon, believing vaccines are "risk-free" does not make it true either. Not being "aware" of evidence does not mean it doesn't exist.
RISK FREE
Here's what I mean by risk free. Ignore all problems that clear up in a few days. What's left?
An estimated 1 in a million chance of developing GBS based on studies of flu vaccine since 1976. With a 10% chance of dying or 1 in 10 million. Even using the worst case, in 1976 , there MAY have been 25 deaths amongt 40 million vaccinated . That's extremely safe, even if the vaccine won't work.
And it will work wonderfully this time. There's a great match between virus and vaccine. And unlike the questioned seasonal flu, those who need to be protected will get a strong response to the vaccine. One study found 83.9% seroconversion with adjuvant, Canadians will have seroconversion of 96.7%. http://www
But I think I was wrong to use VAERS. Continued below..
jackiesmom - great comment
Violating the prime directive, I state the following: I think VAERS data are useless as evidence for or against vaccine --> ALS. See below.
I was diagnosed with ALS in October 2007. Fortunately I have two "public options" which have been extraordinarily helpful. Medicare which paid for a very expensive power wheel chair among other necessities, and the VA which covered the cost of a ceiling lift from bed to bathroom and the latest computer system for vets with this disease.
Rich
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StogiePup - I'm glad you have help. I wish you didn't need it. Jim's social security was going to go into effect in January I believe. Does everyone with ALS qualify for Medicare? I appreciate your insight. What can we do to help in the fight against ALS, in your opinion?
Kim
I believe so Kim. What we need is awareness to stimulate the research and a high profile spokesperson. Look what Michael J. Fox has accomplished on behalf of Parkinson's. And one can hardly turn on the tv without seeing pink baseball bats or psa's for breast cancer. We have nothing like that because of our numbers. It has been said that if Oprah had ALS we would have a cure in a year.
Rich
Wonderful article. Sorry for your loss.
I'm going to go forward your story to all of my conservative friends who think we don't need health care reform. You'd think that hearing the stories of people who have suffered under the current system would be enough for people to see the need for change - but, shockingly, it often isn't. Maybe people just need to hear more and more stories of the suffering normal, everyday people are facing.
I've shared the story about my family with friends and relatives - a daughter with autism, a son with thirty food allergies, losing health insurance that wouldn't allow for speech therapy, high debt due to experimental "biomed" therapies, and on and on - and I usually get stunned silence. People seem to cling to their beliefs quite stubbornly
Keep writing - so we can continue sharing your articles and challenging peoples' thinking.
Kim, your piece on Jim's death from ALS brought back memories of my FIL's battle with the disease.
It was 30 years ago when the only option was to go home and die. You would think in the time that has passed we would have treatments, but this is not the case. I am sure Jim's wife, just like my MIL and DH, had to care for their once strong and now fragile patient. It is a lonely road.
My heart goes out to you and Jim's family.
Beautiful post, Kim. Thank you so much for helping us remember the caring that we all need given our frail condition as human beings.
I too have a friend/ colleague with ALS, and it's been a shocking and poignant experience for all who know her. It's an important reminder that none of us is immune.
May your friend rest in peace.
Alison
I'm so sorry for your friend and his family. It's just a hideous injustice.
As my father was dying from an ALS-like flu shot reaction, the nursing home for some reason billed the Veteran's Administration though my parents had expressly told them not to. Because of this, the bill for the nursing home appeared artifially low. My father was a WWII veteran but refused VA care. In any case, when my father died, within a week the nursing home suddenly "discovered" their mistake and saddled my mother with a shocking bill. Part of the charges included a slew of psychiatric drugs listed under cryptic generic names that my father had never consented to and were making him miserable. I arranged for him to be withdrawn at his request.
My father had stopped eating in the last weeks of his life and we have to wonder if this was partly because he was aware of the expense of keeping him alive. We could not convince him not to worry about it-- worrying about money had always been his favorite past time but, despite this, he had always been willing to pay more taxes to support a public option. Without that choice, he wanted the money to be left for my mother and his grandchildren, two of whom were also vaccine injured. He wanted to die faster-- and he did. Before he died, he wrote that the pharmaceutical companies were seeking nothing less than the "divine right of kings".
I'm so sorry about your Father, Kim's friend Jim, & all the rest of the diseased & chronically ill people making up a huge portion of our nation, who have gone to early graves, due to vaccine damage going unchecked all these years.
See the most revealing & eye opening facts on this matter going on here at HuffPo at this current & most important article.
President Obama's administration is listening so add your voice, please.
No matter which side of this issue you stand on, our children are too important not to address this matter:
http://www
I really hope you're right - that the administration is listening to us.
Both my conservative and liberal friends are quite afraid and confused right now!
On only 7 occasions since 1901, has any one reported that thought they developed ALS after vaccination. CDC-Wonder via VAERS.
I now realize that VAERS data has nothing to say about vaccine--> ALS. Sorry.
I went to high school with his son Jim. He turned out to be a really well rounded guy, I never knew his father but it sounds like the apple didn't fall far from the tree. It's very sad talking to other people from the community (a fairly wealthy community) who still don't realize that these are the people being denied health coverage, some one I talked to regarding the issue had the audacity to call those without insurance 'derelict losers' looking for government handouts.
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Hi, Zxrod. I lived in that town... White bread. Apple pie. Clock Tower. Murder of a young Mom a few years back. Pedophile teacher who committed suicide last year. Drunk bus driver one year. Small town America! And fiercely Republican. In '04 Our Kerry sign in our yard caused a neighborhood uproar. I had this vision of moving away after Kerry won (alas!) and hosting a party with a HUGE lit sign in our front yard, "Heathenpalooza, back to the blue states party here." We DID move back to Massachusetts. Aaaahhhhh. And now are in CT. We were at Jim's wake and funeral with our three daughters. It never ceases to amaze me how people with so much can care so litte - until the anvil falls on THEIR head and not the Coyotes...
Very thoughtful piece, Kim. I am very sorry for what Jim and his family had to go through. Even with health insurance, the copays can drive someone to bankruptcy. A coworker who survived cancer had to file bankruptcy this year and had to get a second mortgage on his house to pay for his treatment, and he had health insurance. Now his house will probably go into foreclosure. We sometimes spend $500 a month in doctor and prescription copays to treat my husband's depression
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One year we had insurance that would have required us to spend $22,000 in premiums and deductibles before we got any coverage outside of well visits - assuming each family member needed non-well visit care. The company bragged that premiums weren't going up! But the deductibles quadrupled per family member. They are now bankrupt and gone.
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