I am sick of the "severely debilitated with M.S." meme Ann Romney camp

[pkz]

8 yrs. ago a beautiful vibrant young new mother woke up to find that she could not stand. She literally collapsed to the floor. She could not feel her left arm or leg and totally blind in her left eye. She has no memory of her youth, all lost in this episode. After the MS diagnosis she was told that she has many lesions on her brain and spinal cord. She tried many treatments, with lots of side effects. She cannot get on her husbands insurance, must keep her job, work even when she doesn't feel like it to keep her own insurance. She has a prognosis that is not so good, she has 2 children and is only 35 yrs. old. A treatment is working somewhat....an IV infusion monthly at the cost of over 3000.00. This woman is my daughter.

[pkz]

1. not snarky...just irked

A person of much means can get the very best care and has the advantage of unemployment so they can afford to get the rest their body needs.

[Bluerthanblue]

13. nothing snarky in what you have said-

I can understand your frustration and think what you are saying is something that should be said.

[freshwest]

59. I agree and Ann should not be riding on the backs of those who are doing without. Mitt hurt a lot of

People, destroying their jobs and healthcare. While it would be great to feel a sense of solidarity coming from a presidential candidate and their family with what many people suffered, Mitt wants to even remove the ACA. Obama has shown he does care.

I know you know tthis disease is going to hurt your family terribly. The Romneys have no comparison in their lives to what you and yours are going through now. I can't help you but I wish you and your family well. Have had similar things in my life and had to do without. Those who have not done without, as Ann has not done without, have no comprehension of all that will be lost.

I comprehend bitterness, and hurt, and maybe you will feel better when this election is over and you don't have to hear about this. The contrast is so stark to what many Americans are dealing with. I would feel more kinship with Ann if she was advocating to help people without insurance, but I haven't heard her give sympathy to others suffering the disease. Or people without insurance. There is a possibility she has, but why isn't it being used in the campaign to make the Romney appear more human?

It's not wrong to be wealthy. But it's wrong to talk down to people as she has done. She has every advantage, but I haven't heard her express any empathy for others. Her husband says he will sign the Ryan budget to end Medicare and Medicaid and repeal the ACA. Where is the humane vote from the GOP on these matters?

Best wishes from me to you and yours. Sorry I can't do more.

[Kalidurga]

2. I don't even know anyone with MS...

and I am sick of it. I don't know to what extent Ann has symptoms. I do know they vary from person to person and she claims she is in remission. I am going to take heat for this. But, I think she doesn't really have MS.

[notadmblnd]

12. I think that too.

All the people I've ever known or met (at least 3) were very sick with it, even on good days.

[kurtzapril4]

26. Wow! You've met 3 whole people

with MS! That's such a statistically signifigant sample that you should definitely base your views on how people with MS should exhibit their symptoms!

There is a large group of people with MS who exhibit no outward signs of having MS. I am fortunate to be one of those. I'm sorry that Ann Romney is not handicapped enough for you guys. I dislike her because she's an arrogant, condescending, out of touch douche, not because she can walk.

[a2liberal]

31. This.

Thank you.

It trends to be a progressively debilitating disease. Just because OP's daughter didn't discover it until very late does not mean that others who are in earlier stages are not struggling with the physical symptoms (many of which can be related to sensation and not outwardly visible) and the mental symptoms both caused by and aggravated by the disease.

OP should ask his/her daughter's doctors what percentage if their patients are like his/her daughter.

[demwing]

33. I believe you're missing the point

I don't think the OP is mad at Ann Romney, I think she's upset at how we are being told to feel sympathy for Romney when there are others who struggle with worse symptoms and without the same financial support system, but who get no sympathy from Republicans.

Why should we care about Ann Romney's illness when, on day #1 of his Presidency, Romney has vowed to overturn Obamacare?

[a2liberal]

34. That is not what I got out of the OP

I tend to mostly agree with you on this. But somehow, reading the OP definitely gave me a vibe of "if it's not as bad as my daughter has it, it's made-up or not serious". Reading through it again, I don't "intellectually" see where it explicitly says that or where I drew that conclusion from, but I'm guessing there's something subconscious about it that is making others also draw the same vibe from a first reading.

[pkz]

45. not my intention at all

When she was diagnosed I plainly told her "this is your one shot, play the why me card or let's fight this thing"
Everyone has different symptoms, and exacerbations.
I would never make light of anyone with this disease nor would I compare "cases"


I just plain do not like the quote:

“Here’s somebody who was severely debilitated with M.S. and then when she gets to the Olympic games, she’s going almost non-stop.”

It's like they throw out the MS thing whenever they want some sympathy, or when they want people to lay off. The quote was in reference to A Romney not wanting to discuss her horse with press

[a2liberal]

55. Thanks for clarifying!

Sorry I misinterpreted

[ismnotwasm]

65. I agree; My husband has MS

He has chronic pain, balance issues, persistent tinnitus, extremity numbness, headaches, muscle spasms, short term memory loss, laryingospasms, occasional incontinence, debilitating fatigue--and that's just off the top of my head. He can still walk, he can still drive. If you didn't know his condition, you wouldn't be able to tell.

Ms. Romney is an elitist asshole, yes, but MS is a fucked up disease.

[Mojorabbit]

54. I have MS and this is the most frustrating thing about it

That it can be invisible, so much so that the national ms society has a brochure titled, "But you look so good"
I have a ton of days when I look just fine and you would never know on the outside how sick I am feeling.

[aquart]

61. Yup.

But I'm still glad you are at least looking healthy. And I hope it continues.

[CountAllVotes]

66. not doing good at 3:00 am.

I would like to know what Mrs. Romney is doing for this illness. If she would be kind enough to share what she is doing, it could help others perhaps. Note that word: PERHAPS.

The cause of MS is unknown and quite recently (within the past few days) it has come to light that the interferon drugs do not work. So much for those treatments costing thousands of dollars being pushed by the greedy pharmaceutical pigs, and yes, that is what they are, greedy pigs.

As for Ann, she should step up to the plate and SAY SOMETHING.

However, Michelle Obama's father had MS too and he and died of "complications of MS" in his mid-50's while struggling to go to work to put her through school. And then, he died.

Why doesn't Michelle Obama say something? I've been wondering about this since she became the First Lady. If I was her, I be scared that one of my kids would end up with it; a thought I hate to even ponder, but it is possibility I believe.

There is plenty of finger pointing to go around.

What I'd like to see in a treatment or cure that actually works, that is what I would like to see.

People can speculate all they want. To say someone dx'd with this illness is not sick is B.S. Anyone with this shit is sick and that includes Ann Romney!!

[Mojorabbit]

75. I am in year 2 of a clinical trial

of a pill (teriflunomide). I have done more in the past 2 years since on it than in the last decade. It really seems to help a lot. Perhaps your neurologist might be able to provide you with it if you'd like to try something new(don't know if only available via participating in clinical trial or no). I am 56 and have progressed quite a bit myself. Dx in 86.

[Arugula Latte]

27. I've known many people with MS

Among them is a range of "hardly had a symptom for ten years" to total debilitation. It's a horrible disease, even if you have the mild kind, because you just never know when it might kick into high gear, and you have to live with that fear and uncertainty.

Ann Romney seems "fortunate" (for someone who has MS) that her symptoms are either mild or not presenting currently, but I doubt she'd lie about actually having that disease.

[truedelphi]

32. Thank you for the wisdom, knowledge and compassion in your statement.

I wish other people could set aside politics for a moment and not
"witch slap" someone with a terrible disease.

[aquart]

62. Yup.

[EmeraldCityGrl]

50. My husbands boss and

my best friend's mother both have/had MS. Remission never occurred. There was
a constant progression that at times escalated. One of the two has access to the
best medical care available and is in a wheelchair. Just sayin.

[RebelOne]

71. I worked with a girl who had MS.

It seemed to hit her suddenly. She would walk with a cane or crutches. Finally, after a while, she had to take a leave of absence. As far as I know, she never came back. I was laid off about a year after she left.

[Marrah_G]

3. I have zero sympathy for mrs bain

I am so sorry for what your daughter is going through.

[Aviation Pro]

4. What?!?

Her insurance didn't cover the cost of a prom horse?!?

Seriously, what a tragedy and I hope she continues to fight against this disease.

[Logical]

5. Copaxone has no side effects. Worked for my cousin. But no drug works on all.

[kurtzapril4]

28. Copaxone has side effects.

Depends on the person using it. My neighbor takes Copaxone, and she gets big itchy welts at the injection sites. I take a different drug, Avonex, and I get flu-like symptoms for a few hours.

[Logical]

37. Avonex made them feel horrible. Different for different people I guess. n-t

[kurtzapril4]

38. I take my Avonex

on friday night, then have a couple of ibuprofen before I go to bed. That way I sleep through the worst of the side effects.

[Logical]

42. Yes, many do not like the daily injections for Copaxone. But it has the largest market share. The...

side effect profile is minor. Mostly injection site issues like you said.

[Mojorabbit]

74. I have permanent divits in my arms and legs from copaxone injections, a side effect. nt

[bigtree]

6. .

[maxrandb]

7. I'm with you

I've seen quite a few people with debilitating injuries and illnesses...and some of them are complete assholes!

[grasswire]

8. my best wishes to your family, pkx

It must be so difficult to watch one's child fight this kind of bodily chaos.

Take care of yourself too.

[Lizzie Poppet]

9. A good friend of mine has MS.

On her good days, she can take slow walks around her block with a cane, but it's getting more risky for her all the time. On the not so good days, she's happy to be able to navigate her house with a walker. Her disabilities in the areas of movement and balance, as well as the considerable inhibition of her speech, make it impossible for her to find work. Her husband works hard (at both his job and as her primary source of support and care), but they have no medical coverage and the free care available to her is minimal.

I'm probably being petty here, but knowing Sarah and what she's going through makes it difficult for me to muster a great deal of sympathy for Ann Romney.

[Worried senior]

10. I agree that

I don't care about Ann Romney, don't know if she really has M.S. or not but whatever is going on she's doing very well.

I care about all those that have conditions for which they struggle to find any treatment for or if found the cost forbids them from getting help.

She uses the M.S. whenever it seems necessary. She should just go ride her horse and keep her mouth shut.

Maybe go buy some more $1000.00 shirts at a store that she has closed for several hours so the little people don't interfere.

[Bluerthanblue]

11. I agree-

and am so sad to hear about what your daughter and your whole family is going through.

I've known people who have been fortunate like Ms. Romney to suffer very few serious debilitating symptoms, and others who have had and are currently grievously impacted by this terrible little-understood disease. It is unfair to your daughter and so many others like her when Ann is used as the poster girl for those whose suffering is something quite different, more life altering and resistant to remission.

wishing you and your daughter comfort and healing.

[riverbendviewgal]

14. why don't you write to both Obama and Rommey

and see who answers you with help.

Also write to Michelle and Anne Rommey...


The power of the pen.

America sucks with their health care. My Canadian friends all shake our heads and say health care in America is for the rich and those who have jobs...and even those may not get insurance and greatly fear losing their jobs because they would lose their health insurance. It is soooo sad for Americans to live like this.

I am so sorry for your daughter. I know what it is like to see your child suffer. My son died from a brain tumour at 26 years old. He was so full of life and was going to get married the year he died.

[renate]

63. how awful

I am so sorry for the loss of your son. I can't imagine how painful that must have been for you--and for him (and his fiancee), with his love and enthusiasm for life and such big plans. That is so, so sad.

[datasuspect]

15. at first i thought it said Ayn Rand

[Tom Ripley]

16. There is nothing else they can say about her because she has no professional, charitable, etc...

accomplishments.


I am sending good thoughts to your daughter.

[Patiod]

17. Everyone has a different MS

I've interviewed a lot of MS patients for my job in market research, and the range of MS disabilities is jaw-dropping. College Professors who can no longer read, people who can no longer walk, people who can no longer see. People like your daughter, people who are badly disabled.

And then there are people like my sister-in-law, who has had leg and back trouble, but she holds down a FT job as a dialysis nurse. She has MS, too, but its effect on her life is relatively small.

I'm guessing Anne Romney is in my SIL's category - impacted but not disabled by the disease. I don't envy her or anyone who has to deal with it.

I hope there is better treatment soon, for your daughter's sake. I hope we have better health care soon, too.

[The Wielding Truth]

22. That's what I was going to say. Many people go in and out of remission. Some progress slowly and some

have few symptoms until it is in an advanced stage. I hope that your daughters goes into remission and stays. Bless your family. I will send you good and healing thoughts.

[johnd83]

18. It may be worth getting a Lyme test

The symptoms are almost identical, but Lyme is a lot more treatable. A lot of people with MS have been misdiagnosed because of the controversy about Lyme. The type of neurological problems you describe are common in advanced Lyme patients.

[OhioChick]

70. Good point

Also, upon doing quite a bit of research, there does seem to be a link between MS and Mycoplasma infections. Professor Garth Nicolson has a lot of information out there.

[heaven05]

19. grrrrrrrrrrrrrrr

man!!! I'm sad. to hell with a. romoney!!!!

[KamaAina]

20. Will Pitt and his lovely bride agree with you

she has MS, too. So does my former boss.

[slackmaster]

21. MS is terrible. Even a victim who is not severely debilitated has to deal with the FEAR...

...of what the disease MIGHT do.

All the money in the world can't stop it.

[LynneSin]

23. I work with someone just like your daughter

I'm finding that most MS people do not identify with Ann Romney nor do they like her. She doesn't represent what MS is. She represent how fucking unfair our healthcare system is

[global1]

77. I Don't Know If I Completely Agree With You About Ann Romney.....

the fact that she has MS and is not experiencing any debilitating symptoms - people that see her and hear that she has MS - minimize the disease and don't think of it as a serious debilitating disease.

This has to hurt foundations that are formed to help people with MS raise money to help MS patients. You might say that "she doesn't represent what MS is" - but to people that hear that she has MS and see that she can carry on her normal daily activities basically unscathed - might get the impression that MS is not a serious disease.

Upon reading this thread - I did and internet search to find out more about the disease. It is really a devastating disease and like it has been mentioned in this thread - all people don't exhibit the same symptoms. Some are really debilitated and are mobility challenged - others like Ann Romney can basically carry on normal day to day activities.

For anyone in the Chicagoland Area I came across this Foundation called TEAM CHRISSY. They are trying to raise money to help people in the Chicago Area that are afflicted with the disease. Looks like if you do have MS - this would be a good foundation to get in touch with. Their website is: www.teamchrissy.org

I see where you can make a donation through PayPal on their site and after reading this thread - I'm going to donate to them.

[Marcia Brady]

78. I find that an--odd--thing to say

Do you think that people who have survived cancer, or lived many years with it, hurt foundations raising money for cancer research?? Maybe when people see someone who has had cancer living a good, healthy, full life, they won't think cancer is a serious disease?

Sheeesh.

[libinnyandia]

24. My 54 year old niece has been in a nursing home for more than 20 years. My sister raised her

son. Thank God she had good insurance.

[nolabear]

25. The strange thing about Mrs. R. is that she could do great good for people with MS

but like her husband she just doesn't seem to think in those terms. She isn't advocating, she isn't finding meaning in her capacity to help others through what and who she knows, just...nothing. I don't think you could find these peoples' souls with the Hubbel Telescope. It's just the strangest thing.

I tihnk they might just be the real, distilled face of capitalism, and it is terrifying.

[justabob]

35. this

She could so easily support a therapeutic riding camp or center or whatever riding charity, there are several.... or she could start her own. It would even be another effing tax deduction ffs.

[riderinthestorm]

39. This I actually agree with you about. I have to wonder why she hasn't gone that route

Supporting an Olympic pair is fine and dandy but supporting a therapeutic riding center would "give back" so much more.

[justabob]

48. I know... I wonder too

It wouldn't take anything away from her Olympic/dressage advocacy, indeed giving back would enhance it. I have no problem with her dressage or Rafalca or any of that.....Except that we have to have nine million posts about how dressage isn't a sport, only elitists ride and all the rest of the bullshit. Thank you for so tirelessly educating people on the subject btw.

[riderinthestorm]

52. I'm trying. Not sure its doing any good but I'm trying...thanks for the kind words. nt

[justabob]

53. the haters will hate

but many more people have learned from you and magical thyme (I hope I am remembering right). Anyway, thanks again.

[nolabear]

58. Seconded. Two important additions to DU discussions.

Okay, three with you.

[pnwmom]

29. I'm so sorry, pkz. It must be extremely galling to hear that meme.

Ann can get all the rest she needs to stay healthy but people like your daughter not only have to work, whether they're up to it or not, but at any point they could still lose their health insurance.

[NYC_SKP]

30. Hear, Hear. And, our thoughts are with you and your wonderful daughter.

Hiding behind MS, the Romneys are even more despicable.

[appleannie1]

36. My aunt fought MS for over 40 years. I have seen her unable to hold a comb or walk yet she

fought one. As she went blind she memorized the streets in their town so she would know where she was when riding in a car. I don't wish that sort of thing on anyone but Ann Romney is not severely handicapped by the disease. Not at all. Hopefully she never is but she should not use it to garner sympathy.

[riderinthestorm]

40. Hugs to you and your daughter pkz. I sincerely hope we can change our healthcare system

in this country. I have no idea if the ACA will get us there but I have hope we can see universal healthcare soon.

[kestrel91316]

41. I've seen "seriously disabled with MS" before, and it doesn't look anything at all

like Goodwife Rmoney.

It's in a wheelchair, if not completely bedridden.

[LisaL]

43. Not all people with ms and in wheelchair or completely bedridden.

There are different types of progression. If she has relapsing kind, she could have good periods (remission).

[kestrel91316]

46. I am referring to "SERIOUSLY DISABLED WITH MS". You really need to stop with the

arguing for the sake of arguing.

[LisaL]

49. She could be seriously disabled at some times, and better at others.

[riderinthestorm]

51. Ann has remitting MS. That's not an argument for the sake of arguing

its just a fact.

Right now, today, she (or anyone else with that kind of MS) may be fine. And be seriously disabled tomorrow....

Honestly, attacking her because her MS isn't that bad seems weird.

[pkz]

44. Thank you all for the prayers and kind words

Jenelle has relapsing-remitting MS, ironically called "galloping MS"

She does better in the summer months, cold seems to make the symptoms much worse

[Manifestor_of_Light]

47. It ended the career of the greatest cellist of the 20th century

http://en.wikipedia.org/wiki/Jacqueline_Du_Pre

She died at age 42. I was fortunate enough to see her play the Elgar Cello Concerto with the Houston Symphony during her brief concert career.

I would say she is the greatest FIDDLER of the 20th century. By "Fiddler" I mean "violin, viola or cello player".

Subject of the movie "Hilary and Jackie".
Jacqueline du Pre playing the first movement of the Elgar Cello Concerto:

&feature=related

[wilt the stilt]

56. I know 2 people with MS

one is totally wheelchair bound and is in terrible shape. My brother in law also has it and he has been using a cane for a long time. Ann's is very mild which doesn't means it can't get worse at any time but she is hardly severely debilitated.

[WillowTree]

57. I have tremendous sympathy for anyone who has this disease, regardless of party or position.

[lumberjack_jeff]

60. MS treatments are prohibitively expensive.

The expense is arguably one of the most debilitating parts of the disease.

[NNN0LHI]

64. Feel your pain

[Avalux]

67. I'm so sorry about your daughter....the treatment cost is significant here.

First, we have no way of knowing if Anny Romney even has MS (how could we, the Romneys are liars), and if she does, the severity. Let's assume she does....with an unlimited source of funds, she can afford any and every treatment available, and the best doctors and care. Having to choose, having to worry about insurance coverage and cost doesn't even enter her mind. It is a burden she and her family do not have to bear.

I am not begrudging her that, it's just that someone like your daughter should receive the care she needs without that burden as well. In this country, that's how it should be.

[Smilo]

68. I am sick of the "severely debilitated with M.S." meme Ann Romney camp

Me too - but then the GOPT realize that Mitt has absolutely nothing going for him, so what can they do but milk the fact his wife has MS. Then they attack anyone who says anything about her - even when it has nothing to do with her MS/breast cancer.

[Harriety]

69. My bother had it for two years and he died from complications

after being hospitalized and then sent to a nursing home where he withered up and died. He was perfectly healthy before he was diagnosed with MS and it came as quite a shock to our family. We were told at the onset though from his Dr.s that he would not live very long.

I realize there are many types of MS and that my brothers was the worst. I don't see Ann Romney have the fraction of symptoms that my brother did, but I can sympathize with anyone who has it. Any disease like this, should be treated by the best professionals. In Mrs. Romney's case she has had access to the best, as we all should.

We should really have a single payer health care system, but we've settled for whatever we could get as far as reform, and I'm sure it will help some people as it already has. A President Romney however vowed he'd repeal even that. That's wrong, and if people don't pay attention to what that man is trying to do and vote that bastard in it will be a travesty for so many who've been given hope of receiving good affordable care.

[xtraxritical]

72. Michale J. Fox has MS and everyone knows him.

[mentalsolstice]

73. Wrong...he has Parkinson's. nt

[byoung6]

76. I understand completely

And I don't think it makes me selfish or unsympathetic to be sick of "Poor Ann Romney has MS" I am a disabled 50 something american woman. I was a wife, mother, employee. I am now a mother and dependant on my own mother for a place to live, and someone to take care of me on a far to often basis. There is no treatment for my illness, only maintinence. I don't have MS, but I lost my husband, my work, my relationship with mey children became strained and I am only a limited grandma, surely not the help that I want to be to my family.
I lost everything, not somethings, I lost EVERYTHING because of my illness. I pray for you, and your daughter. Believe me I understand, and no, your daughter's situation is NOTHING like Ann Romney, and any anger you have is justified.