This was linked earlier in the thread with the Salvation Army ad, and described as devastating. This is probably the most heartbreaking commercial I have ever seen:
So sad.
Devastating
by John Cole| 66 Comments
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Devastating
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ALS: We need a cure…
I saw this video on Balloon Juice. 4 Words: We need a cure…….
Laura W
Suddenly I do not feel quite so apologetic for my previous post on previous thread.
What more is there to say?
NS
I wonder how far it is from pity to contempt.
John Cole
Laura, what are you talking about?
Michael D.
My cousin, Al, died of ALS a couple years ago. My best friend’s mom died 4 years ago. In the end, she died because she couldn’t breathe and she was no longer able to swallow.
Another childhood friend lost his mom, Patricia, a couple years ago. Aside from my local NPR station, all my charity money goes to ALS.
It truly is a motherfucker. That’s the nicest way to describe it. It really is a cruel joke that’s played on these people.
Sasha
He’s obviously off his meds to exaggerate the symptoms. The ALS Society should be ashamed.
Sasha
P.S. The above is snark at the expense of Rush Limbaugh.
ThymeZoneThePlumber
Up close and personal, I have seen slow death from cancer, brain tumor, liver disease, ALS, heart disease, COPD, lymphoma. And I’m not a caregiver, just a family member or friend.
I have mixed feelings about commercials like this. I suppose it is well intentioned, so I will go with that.
Stuck
ALS is one of those diseases that really causes one to question the existence of any God they may believe in while lending credence to the Atheist viewpoint. Absolutely cruel it is.
John Cole
It wasn’t just Rush, it was a whole bunch of right wing bloggers as well. K-Lo was one of them, if I remember right. The thing I have to keep remembering is that they were always scumbags, and I am the one who changed.
valdivia
Yes devastating. I have a very close friend just recently diagnosed with a very rare disease which is often fatal (not ALS) and this just makes thing real for me somehow…
Laura W
@John Cole: Oh, nothing sarcastic or irreverent at all. Quite the opposite. Certainly not something appropriate to "work out" in a comment thread. Goes back to some of Elie’s comments in the previous thread and how they struck me, today.
If you’re sincerely interested, I’ll think it through to more clarity and shoot it off to you in an email titled:
‘I Hope U R HAPPY’
or:
“HERE IS SOME CHANGE YOU CAN BELIEVE IN”
or:
"RE: The Stealers".
(insert winking emoticon here.)
BDeevDad
But stem cell research is evil!!!
DougJ
It’s so frustrating that we still know so little about autoimmune diseases like ALS. Let’s hope that can the next frontier in medical research. They do have a drug that treats a rare form of arthritis (that a friend of mine has) that seems similar to ALS and MS. So maybe a cure isn’t so far off.
BDeevDad
@John Cole: What I did not get was WTF difference does it make whether he was on his meds or not. These are neurodegenerative diseases. There is no getting better at the moment, just a slowing of the progression.
Comrade Mary, Would-Be Minion Of Bad Horse
No matter how tight things get here (and they have been tight), I always donate something to the ALS Society of Canada every year. I don’t know anyone who has suffered from it, but it just strikes me as such a horrific fate that I have to do even that little bit every year to fight it.
Elie
While ALS and many other debilitating diseases are horrible beyond words, there is also the reality that living with and loving a person so afflicted is important for our souls, important for understanding dignity and the real meaning of priorities.
Severe illness, cancer, ALS, Parkinson Disease, a host of others, knock the bullshit out of you and everyone who cares about you. The pain is excruciating, I know both having family and loved ones afflicted, but also being a nurse.
I have never truly felt more honored and more dialed into the nobility of flesh and its bridge to our souls, than caring for my Dad during his terminal bout with Parkinson Disease. My days were apportioned into watching his swallows, cleaning him, and trying to communicate to the father that I loved behind those blank eyes. There were few answers during those months but I know that caring for him cared for something in me. I know how fragile and transitory our sense of command is — our real control. There is freedom in accepting that control is transitory and always less than what we think. My Dad is free at last as well…
Shibby
Hello, your friendly medical student here. I just wanted to clear some things up.
DougJ, the cause of ALS is unknown as is the source of neuronal damage. It is possible it is autoimmune but it is by no means definitive. However, there exists a familial form of the disease (10% of cases) where a defect in superoxide dismutase, an enzyme involved in protecting neurons, is dysfunctional. Work is currently being done in this area, but ALS is proving to be quite an elusive disease.
BDeevDad, Parkinson’s is an amazingly treatable disease these days. Between L-DOPA (watch Awakenings) and implantable devices, most patients can experience little disability. When you see Michael Fox, most of the time he is over-medicated (this is not my opinion this is via the Parkinson’s specialist at my school), hence his jerky and overactive movements.
These tips aside, I cannot think of a cause more worthy of your time and money than ALS. It is vastly more common than many people realize (1/800 males) and so very little is known about it. Rilutek, a drug that treats the overproduction of glutamate (a messenger molecule) involved in the disease is the only proven treatment for ALS. It only extends survival by a few months.
Keep in mind how much of a blessing good health is and remember to help those less fortunate.
ThymeZoneThePlumber
Well, assuming that this is an open thread ….
So, you mean to say, if I draw a picture of a dead monkey and say that it wrote the stimulus bill, I can call you an asshole for suggesting that there is a racist tone to the cartoon?
Well, no, you can’t, you lying c&cks*cker racist piece of shyte.
Discuss.
Litlebritdifrnt
AK teh balloon juice is broken!
Twisted Martini
John, I’m curious if you had a lightning-strike type conversion to rejecting the Rethugs, or was it slowly building into an "aha" moment. I ask this because some of my friends have recently turned their Facebook pages into the Free Republic.
I tried doing battle with them using facts and reason (including this site), but some of the shit they were saying was truly scary. Is there hope for them? I have sworn off Facebook for the time being, anyway.
Xanthippas
Well, thanks for causing me to tear up here at work.
Litlebritdifrnt
@Laura W:
It would appear I have "acquired" another kitteh. He is all black, apparently very healthy and sleek looking, I discovered him living under my deck (and driving the boxers absolutely INSANE!) later that morning I saw him casually walking into the garage. Yesterday morning he was quite happily eating breakfast at the front door feeder and didn’t even move when I opened the door, he just sort of looked at me and said "oh hai! Good food Kthxbai" (I am saying he, have not inspected the nether regions yet). I am beginning to think that there is an invisible to humans but visible to cats neon 10 foot sign in my front yard "KITTEHS WELCOME HERE, GOOD FOOD, OBEDIENT STAFF, COMFY QUARTERS" I am doomed.
Laura W
@Elie:
There, John, there is my answer to your query as to what I meant. Fortunately, Elie laid it out in her beautiful prose so I did not have to think too hard tonight (which I really prefer not to do tonight. Because today sucked ass.)
Tonight I find myself wondering if I can wake early tomorrow and go enroll my fat, lazy, self-obsessed, narcissistic ass in an 8-week, 24-hour, hospice volunteer training course at our local hospital. I’m guessing "no" tonight, but I suspect if I keep reading Elie’s posts, I may finally do something useful. Or so I hope.
I was not present when my father died, and I should have been. Fear, anger and years of perceived distance kept us apart at that moment, and I will regret it for the rest of my life. There are other ways to make amends.
Lavocat
Clips like this make you realize that EVERY DAY is precious. Who knows who here, among us, may already have this hellish disease unknowingly.
What I like about the clip is the courage of those in the commercial. One of their loved ones is dying a soul-crushingly cruel and slow death, right in front of their eyes, and there’s nothing they can do about it but watch.
With dignity. On your feet; not on your knees.
I pray that I, too, one day have the courage to die with such dignity.
A friend of a friend had this disease. His last words were from his favorite Hendrix tune: "See you in the next world – and don’t be late."
I guess the only silver lining is that ALS rarely afflicts children. Cuz that would truly be calamitous.
Litlebritdifrnt
@Twisted Martini:
Can’t speak for John, but as a reformed republican myself (albeit a center leaning one being pro choice and a tree hugger) my conversion came this election cycle, when the absolute spittle flecked vitriol thrown at Obama became too much to handle to be honest. My sister is black (well half and half like Obama – she was adopted before I was born), the covert racism displayed by the likes of Rush, Hannity, Ingram and Boortz (who I used to really enjoy listening to and agreed with alot of the time) just made my skin crawl. My boss used to consider me a die hard republican because I was so pro-troops, supported Bush on the war to a degree, etc., etc., but these people, (the above mentioned) just did it for me. I supported Bush in the last election because I absolutely and utterly despised John Kerry, for his behavior after Vietnam (both my DH and I are Veterans and we believed that his behaviour was tantamount to treason). This cycle there is no way on this good earth that I could support someone like John McCain, Mr blow in the wind. To me the only candidate worthy of rigorous support was Obama. I have now planted myself firmly in the democrat camp, my boss is so proud :)
bago
@Litlebritdifrnt: Liked conservatism before? Then you’ll love conservatism 2.0, starring Joe the Plumber.
Peep the ad on the left.
Elie
Laura W:
"There are other ways to make amends."
Always.
Lavocat
"With dignity. On your feet; not on your knees."
Although I will say that there is a time for the humility and awareness of being on one’s knees, for lowering one’s pride but earning dignity.
We can be on our knees to the power of love. To the power of true grief and mystery In that circumstance, that period on your knees lets you eventually stand on your feet and look your life in the eye. That is dignity
daybaron
well, there’s a word for it. and you said it. devastating. can’t watch it w/o crying
Carrie
That ad gets me everytime i see it.i knew what it was from the image but had to watch it again.
debillating diseases affects all of us, whether it be neurological or physical.
This hits so close to home today of all days, i can’t begin to describe.
John Cole
There was a bunch of stuff simmering in 2004 (I still voted for Bush), but Terri Schaivo blew it wide open. That was when it became completely clear to me that the GOP is utterly full of shit on everything.
HRA
It’s been 3 years since my son-in-law died from ALS. It was, as once stated by Nancy Reagan about her husband’s disease, a long goodbye. Bill had lost his voice first. Yet, he could still smile and he loved to do thumbs up when he approved.
I have been witness to my parent’s long illnesses. It was very difficult. This was more so as I watched my grandchildren help care for their Dad.
I still cannot watch a play or read any book about it as of now.
J.A.F. Rusty Shackleford
@Stuck:
Hush now child. It’s all a part of His intelligent design.
Interrobang
Elie: Speaking as a person with a disability, and on behalf of all people everywhere with permanent disabilities, chronic and terminal illnesses: Eat shit and die.
We don’t exist to make you feel good about yourself; we don’t exist to teach you lessons, and we sure as hell don’t exist for some higher nonexistent metaphysical purpose. We’re not your goddamn role models. Disabled, ill, and dying people are NOT ABOUT YOU.
Honestly, if you want something that’ll make you feel good about yourself by making you feel virtuous and enlightened, teach you lessons, and give you whatever spurious spiritual feelings you apparently have in your chemically-addled brain, get a dog. Get a Zen garden. Get a fucking aquarium. Don’t take your holiness complex out on an actual human being.
I will say this: You’ve very neatly encapsulated everything that enrages me about some people’s attitude towards the disabled, chronically ill, and dying, which has allowed me to clarify my thoughts significantly, so thanks for that.
Comrade Mary, Would-Be Minion Of Bad Horse
Also from the ALS Society of Canada: Hug.
Not as wrenching as Head and Shoulders, but a very effective PSA that I remember suddenly socking me hard when I first watched it a few years ago. (http://www.als.ca).
Elie
Interrobang " Eat shit and die"
I will definitely die — as will everyone…
I make no apologies to you or anyone for my feelings and my interpretation of reality. I owe YOU no explantion and certainly no accountability of what I believe in — Who are YOU to ask ME to account for MY life and what I value?
That you have a disability and everyone has to defer to your fucked up world view, your anger. No way
You know nothing but your anger and I will not be shoved around by it.
BDeevDad
@Shibby:
No offense, but your full of shit. I was diagnosed with PD 3 years ago at the ripe old age of 34. Fox was too aggressive with his treatment, but the motions are similar to many others who have had PD over 10-20 years. Also, a lot factors in to how well the meds work from day to day. I take the most advanced meds available and my hands still shake all the time. Treatment is different for younger patients because the meds need to work for a longer time so we can live longer.
Stuck
@Interrobang:
Au Contraire. They are certainly about those left to care for disabled loved ones, or care for others professionally. They earned the right to have an opinion and to express it. Chill, K/
Elie
Thank you Stuck —
I am only who I am.
Elie
Interrobang —
You saw something clearly in what I said that seemed (and maybe was) self serving…
I think you saw something true even if you were harsh in your expression..
I acknowledge that what you said was honest and I am still thinking about it. Maybe I don’t know how to fully make it about just the other person.
Do you?
anonevent
@Interrobang:
As someone who grew up with my dad having epilepsy, I can tell you, that at age 5, it was not all about him. When you grow up worrying every day that your dad is going to have a seizure and swallow his tongue – things I had heard as a child and I believed because they were scary – there was always a fear that he was going to be gone. Even 34 years after that day at kindergarden where I was the only person at school that knew what to do, I still worry when he goes off alone, even though he hasn’t had a seizure in 20 years. Watching every day for that sign where he would turn his head with his mouth open so that my mom and I could catch him before he fell was heart-wrenching for a child. So, no, physical problems are not just about the person who has them.
BDeevDad
@Elie: I wouldn’t worry about it because it is also about you and it cannot be just about the person who is disabled or sick because it affects you and for someone not to acknowledge that is selfish. My wife had to grieve the fact that our lives will be different then expected while my children will have to learn to live with a father that does not always throw the ball straight. Feeling proud of the good work you did for your father is justified and should not be derided.
anonevent
I should say not just physical problems, but all problems.
NS
@Ellie, anonevent, Stuck:
It’s not that it’s all about individuals with disabilities and it’s not that caregivers and family members don’t have a right to an opinion. It’s that too often it’s never about the person with disabilities and that person having a right to their own opinion. See the Terry Schiavo case as a perfect example of the total lack of awareness our society has of disability rights.
anonevent
@NS:
I agree, though I would say that Schiavo was an extreme example, where she was beyond any ability to voice her wishes. And while I contributed, I think that we had the wrong battle here. We should all be kicking the ass of anyone who thinks that disabled people are someone else’s problem and they have no responsibility to help make the lives of everyone better.
Stuck
@NS:
That was purely a religious wingnut operation, and if you check the polls, the vast majority of Americans were appalled at and disagreed with what was done by congress. Even among religious people. Poor analogy/
wonkie
It’s aboput the interactins between people.
When my mother got Alzheimer’s my dad cared for her, five years of hard, hard work. He was eighty, nearly blind, hard of hearing and had a Bbell’s palsy that made one eye droop and fill with blood. The story of my mother’s disability is also the story f my dad caring for her.
And me, too, since I spent every weekend at their house for the duration.
Muy dad said tht caring for my mother was harder than his service in World War Two.
Caring for someone does change the caregiver, often for the best. Caregivers get to talk about that without being accused of egotism.
Serious illness can cahge a person too. In my mother’s case the change was hard on her: she lost the ability to do anything she wasintereted in without losing any of her energy. Her bored restless drove her nuts as well as everyone else. She lost her ability to speak and along with it her self confidence. She became dependent as she lost her ability to cntrol her muscles or to understand routines of daily life.
The one thing she never forgot was how to say she loved us and she said it over and over again. And my comfort now is that I looked into her eyes and said "I love hyou" over and over back.
It did change my dad and me to care for her, just as her disease changed her.
Shibby
@BDeevDad:
I appreciate your willingness to vent your disagreement with me. Ultimately, being more careful with the manner in which I communicate will help me to become a better doctor. To clarify, I am not a neurologist or an expert on Parkinson’s Disease. I can only repeat what has been taught to me via clinical presentations. In the Parkinson’s doc’s own words, he asked that anyone who had a family member who is experiencing disability from the disease should contact him. I can give you his name and number if you would like to contact him about possibly reviewing your case, and to see if any adjustments in your treatment are warrented. I realize that this is highly personal and you may be hesitant to listen to some random person on an internet blog, but I will leave that up to your discretion.
I am interested in neurology, and I will do some research into the effectiveness of differing treatments based on the patient’s age at onset (the patient we saw was elderly and had a implantable device).
Bougie Applebum
Wow.
Thanks for sharing. Yes the video is sad, but it’s a definite eye opener. I ventured to the website for more info.
BDeevDad
@Shibby: Thanks for taking the criticism. My tremor is not a disability, it is an annoyance, in my case at this time.
Marc
Thanks for that John. I think I’ll go kill myself now.
Caya
Caring for a loved one with a debilitating disease changes both parties involved, that much is sure. That being said, I think I can kinda see where you’re coming from, Interrobang, though I cannot agree on the tone.
My husband suffers from rheumatoid arthritis, and ten years of marriage have let me witness one bizarre situation often enough: when we’re both out and about, and he is in a bad phase and has to use crutches, a scooter or other mobility aids, people tend to just ignore or overlook him – quite the feat at 6’8. I’ve been asked questions about him, given messages of encouragement or pity, and similar, and all the while he was right.next.to.me.
I’m seriously not sure why they do that so often … is it misunderstood politeness, embarrassment, or do they seriously assume that being unable to walk also means he’s dumb? Either way, I can relate to a disabled person being edgy about being treated as invisible and putting the caregiver in the spotlight, even though that surely wasn’t the intent here.
Comrade Nikolita
@Carrie:
I haven’t seen this ad before, but it made me cry.
The one ad I absolutely cannot watch and have to actually change the channel to avoid is the black & white ad of a baby crying in a crib, and no one comes to pick the baby up and comfort it. The text in the ad says that the mother’s been killed by a drunk driver or something like that, and the baby just keeps crying and crying and crying…
Re: Parkinson’s, my female boss is in her mid-50’s and apparently has Parkinson’s. I remember being very surprised when she told me, because other than a bit of stammering in her speech, I wouldn’t have guessed. I can’t remember whether she takes any prescribed medications, but I remember her saying did some holistic herbal therapies from India and they were working wonders for her.
NS
@anonevent
I don’t think the Terry Schiavo’s situation was all that extreme. There are many people in the U.S. with conditions that make it impossible for them to communicate with others. There have also been several examples of people with terminal illnesses or severe disabilities who have been the subject of "mercy killings" by their relatives who were subsequently not charged with a crime or given a significantly reduced sentence. This pattern seems to indicate that we place a lower value on the lives of the disabled.
NS
@ Stuck
I think you’ve proven my point. The Terry Schiavo case played out in the media as a Right wing nut moral crusade against common sense, but the disabled community saw it in a completely different light. Read this essay by a pro-choice feminist on the Schiavo case to get a sense of this perspective. The disabled community in the U.S. is truly marginalized and oppressed and that goes along way to explaining the anger of someone like Interrobang.
Krista
Oh, that one just breaks my heart, especially now that I’m pregnant. The poor little peanut, just crying her little eyes out…
Yeah, that ALS psa gets me every time. I know two people who had it — my great-uncle, and one of my elementary-school teachers. I cannot imagine a disease more nightmarish. And yeah, it definitely makes me want to kick the "it’s all part of God’s plan" proponents square in the junk.
Krista
Makes sense. And it brings us back to the whole "quality of life" argument. What might be unbearable to one person might be just another day to someone else. How can one really define the quality of someone else’s life? If nothing else, the Schiavo case should have encouraged people to make a living will, so that they can define their own parameters. Unfortunately, because it got turned into such a political spectacle, I think that lesson was lost.
bad dad
So much for the "CPA has the flu and needs to be in the office for 1040 interviews" pity party I was having for myself today.
Thanks. (No snark.)
Stuck
@NS:
I have no doubt that the disabled community is marginalized and discriminated against, though less so than it used to be. However, there is a distinct difference between someone who is disabled and a person like Terry Schiavo. She was in a permanent vegetative state, and though it appeared she had some level of consciousness, unfortunately it was only autonomic response from a still functioning brain stem. That is why she is a bad analogy, and, imo was sadly and appallingly used as a political pawn by religious wingnuts, RW politicians, and by some in the disabled community and their advocates.
Cyrus
@Krista:
Wow, I missed that. Congratulations.
Re: the original post, it made me think of a friend of mine whose mother died of ALS about three years ago now. I should get in touch with her. We made vague plans to get together around New Year’s, but they fell through, and I haven’t talked to her since. To the extent that I’ve thought about it at all, I’ve just figured there’s no rush, there’s plenty of time later – but now that I think of it, why am I treating talking to her like it’s an obligation rather than something I want to do? She’s my friend!
Re: Interrobang’s comments, maybe I shouldn’t wade into this since I haven’t been as close to these situations as a lot of people around here apparently have, but I find it a lot easier to understand his attitude than Elie’s.
Egilsson
@Shibby:
This is a very encouraging response from a medical student.
People like me who, by virtue of having a family member with a catastrophic and chronic condition, encounter hordes of young medical students quickly learn that 90% of them are idiots who don’t know what they don’t know. The amount of bullshitting they do is remarkable.
We learned to essentially ignore them, and just wait for the "real" doctors to come along. Some of them weren’t so great either, but top level specialists are usually pretty impressive people.
We loved my daughter’s pediatric oncologists. They were a remarkable group.
NS
@Stuck
It seems pretty blithe to me. Terry Schiavo was in a "permanent vegetative state" and not a "disabled person" therefore her husband has the right to end her life. She had no outward signs of brain activity, and she needed help feeding herself. I think there are more people who fit into this category than you realize, and I don’t know that we want to give their relatives the option of killing them.
The Republicans in Congress certainly acted like asshats during this episode. Terry Schiavo was used as a political pawn, and appallingly so. Take out their buffoonery and we still have an important issue that is rarely a part of public discourse.
HRA
The Terry Schiavo case became not strictly about her as I remember. It became a tug of war between her family and her husband. I heard many who were more focused on the husband’s personal life. It was sad all the way around.
I would like to alert all who have children being in the midst of a situation like ALS at home. Please do your utmost to get them to a therapist after the patient has died. Do not accept anything close to "I am ok".
Stuck
@NS:
The blogs are full of ’em, {sigh}
NS
@Stuck
Touché
former capitalist
I’m sorry I didn’t get to post on this when it was fresh. ALS is, indeed, a horrible disease. It’s worse than death. In fact, death is better than life.
I know. My dad died from ALS, my spouse’s father, and his brother–her uncle–died from ALS, and her aunt–her dad’s sister–is in the late stages of ALS.
My mom was always a pretty strict Republican until she watched BUSHCO destroy medical research while killing indiscriminately in Iraq. She changed her registration to D, and at 94, promises she’ll never vote Republican again.