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Wheelchair

Posted by J. King on 7/05/02 at 18:49 (089189)

I went to a museum today to walk around and ended up having my wife push me in a wheelchair the museum had available. If my feet problems are not a disability then I don't know what is. I can't believe that SSA tells people with bad PF that they don't qualifiy as being disabled.

Re: Wheelchair

Suzanne D on 7/05/02 at 21:06 (089195)

That truly does not seem at all fair, John. Anyone who has had feet problems can attest to the fact that it's about as disabling as you can get. It makes me think of that old song about 'walk a mile in my shoes before you criticize and abuse...'.

I'm glad the chairs were available for you but sorry you were in so much pain you had to use one.

Hang in there,
Suzanne :-)

Re: Wheelchair

Jean P. on 7/07/02 at 19:50 (089256)

I know where you are coming from - a granny using a walker beat me into church today (I wanted to hold the door open for her). Hope you feel better soon.

Re: Wheelchair / SSD ????????

BrianG on 7/07/02 at 19:59 (089257)

So, how do we get the SSA to change their guidelines, and add PF to the official list of disabilities? If only Michael J. Fox had developed cronic PF, instead of Parkinson disease! We need a celebrity spokesperson, if the doctors and pod's will not help to change the rules. Sorry about the dig, and I know it's not their job, but it would be in the best interest of the patient. I'm not thinking individual doc's, but the orginazations they belong to, could be a big help.

Remember, Pf and Depression are much more likely to be approved by the SSD folks, if anyone is thinking of applying.

BrianG

Re: Wheelchair / SSD ????????

J. King on 7/08/02 at 07:00 (089277)

Yes, get a doctor to go over you with a fine tooth comb and diagnosis every single disability or illness you have and include all this when you apply for SSD. I got mine this way by having a list of ailments besides PF. What Brian says about depression is true. Mental and physical is a better combination than just the physical or mental. My problem is that I look fine until I have to do things like walk and stand. It would be better to have lost a leg than PF for disability purpose.

Re: Celebrity update

BrianG on 7/08/02 at 12:52 (089296)

Kind of a coincidence, but this article just appeared at ABCnews.com today. Jerry Lewis has raised 1.6 Billion dollars for Muscular Dystrophy!!!!!! Copied without permission.

BrianG


Celebrities like Michael J. Fox have become influential spokespeople in raising medical research funds.
(Joe Marquette/AP Photo)
Star Power and Medicine
Celebrity Spokespeople Help Raise Research Funds But Is Their Influence Too Great?
Commentary
By Jonathan D. Moreno
Special to ABCNEWS.com
July 8
Tom Duffy's 9-year old son has spinal muscular atrophy. To raise money for research on the disease, Duffy sat on a Scranton, Pa., billboard for 24 hours. 'Honk if you care! Fight spinal muscular atrophy now!' He raised $28,000 for SMA research.
AIDS has Magic Johnson and Elizabeth Taylor as celebrity fund-raisers, breast cancer has Ann Jillian and Rosie O'Donnell, paralysis has Christopher Reeve, sickle cell has 'T-Boz' Watkins, juvenile diabetes has Mary Tyler Moore, multiple sclerosis has Montel Williams, and Parkinson's has Michael J. Fox.
And of course, with $1.6 billion raised for muscular dystrophy, Jerry Lewis is the champion celebrity fund-raiser of them all.
But Duffy's son's disease has no celebrity. Neither does lupus, which strikes more people than AIDS, sickle cell anemia, muscular dystrophy, multiple sclerosis and cystic fibrosis put together.
Medical research follows the money, and the federal government has a lot to give out of your tax dollars, of course. The National Institutes of Health alone will invest more than $20 billion in research this year.
The NIH is about the only federal agency to have its budget increased, and that has a lot to do with the visibility of celebrities who advocate for new treatments. So does the success of some foundations, particularly those with celebrity names attached.
The Celebrity Draw
Celebrities are effective with Congress and in the media because most of us find them so intriguing. Last May, Julia Roberts testified before congress on behalf of $15.5 million in funding for Rett syndrome, a serious neurological disorder affecting young children, especially girls. The disease is tragic, but it certainly helps that members of Congress get a meeting with Pretty Woman while hearing about it.
Politicians and media execs pay attention to celebrities because they think that voters and consumers do. And for good reason. In a recent poll, more than 75 percent of Americans said that the role of the famous in medical research is just about right.
The simple fact is that a famous and attractive person is the best advocate for just about any cause. If they also have the disease themselves, the message only gets more powerful. It's hard to say no to anyone who is suffering, let alone someone whose fame we find fascinating.
Yet we're entitled to ask if this is the right way to set priorities for science. Not all diseases can get equal attention, so there needs to be some way to sort out society's goals. Does star power distort the process?
There is no single 'right' way to fund medical research. Public funding always involves politics, and it should it's the public's money and politics is the way the people express themselves. Private funding always involves private interests and in a free society we can hardly complain about that.
But we can tell when we are seriously off track. Good science should not be overwhelmed by political and personal interests. Until advocacy groups for women, gays and minorities gained strength in the 1980s, Congress tended to focus on diseases that afflicted older white males. We are now more sensitive to the need to distribute both the burdens and the benefits of medical research more fairly.
Influencing Science
Another potential problem is that science is closer to breakthroughs in some conditions than it is in others. In a world of limited resources and lots of good causes, a few celebrities can make a big difference, not always in the most promising direction.
Consider the non-celebrity diseases, like SMA and lupus. A compelling celebrity appeal can take us off track by making us focus on a specific disease to the disadvantage of others with at least a powerful a case.
Recently Julie Andrews lent her prestige to an effort to study how to restore damaged vocal cords. Her singing career ended due to a surgical mistake. A serious loss, to be sure, but it is reasonable to ask how it stacks up against other causes, while a cure is at best many years away.
We should also be wary of stars' medical advice, even though they have the best of motives. After Katie Couric's husband died of colon cancer at age 42, she recommended screening for people that age, but doctors don't.
Many celebrities have urged early prostate cancer screening, though there is great disagreement among experts about it. Not only are there costs in time and expense, but false positives can cause needless grief and even unnecessary medical procedures. In many cases of early disease detection, nothing can be done anyway.
This seems to be part of a new trend. Michael J. Fox, who has Parkinson's disease, thinks the relatively high incidence of the malady among those who worked on a TV show with him is suspicious. He is pushing a theory that the disease is caused by a virus, but hardly any scientists think this is a promising line of study.
Similarly, Christopher Reeve is said to be concerned about the direction of spinal research. We may be entering a period in which celebrities direct the course of science rather than scientists.
In the end, the greatest service that star power can do is call attention to the tragedies that follow from a serious disease and help us realize the need to support science.
The rich and famous do a service in reminding us that even they can be sick and afraid. In this way, they keep us aware of our common humanity, whether our disease has a celebrity or not.
Jonathan D. Moreno is director of the Center for Biomedical Ethics at the University of Virginia.
Copyright 2002 ABC News Internet Ventures.
Click here for Press Information, Terms of Use & Privacy Policy & Internet Safety Information applicable to the site.

Re: Wheelchair

kay on 7/09/02 at 14:14 (089360)

j. king did you seek an attorneys advice or help? the ssd rules states if you cannot work for a year or more you should be eligible. i have been off work for nearly 4 months now and just now had my first surgery. if it is a success i will have the other foot done after this one is better, which won't be for some time. but i think it will take me off for over a year by the time i am healed from my second surgery. my employer will send me a form letter stating i have to sign up for ssd after i am off for 6 months. i think if i am off for a 14 months i should collect it for 14 months, even if its back pay with the help of an attorney. i am not one to sit home and collect welfare but i have worked all my life and when i need the help i expect to get some back temporarly. i couldn't imagine not ever going back to work. but i've paid my dues and i will see an attorney if i have too.
kay

Re: Wheelchair

J. King on 7/09/02 at 16:21 (089365)

I got my SSD without lawyer. I had a lot of medical documentation and no way was I going back to my job. You can't start getting SSD for 6 months after you have become totally disabled. I don't know what they expect you to live on for 6 months but they don't really care. SSD is very tricky and many lawyers will not even look at your case until you have been turned down a couple of times. SSD is not welfare and you have earned it. I don't think many people actually return to work after getting SSD because you have to be so disabled to get it. Usually, that means permanently disabled! Also after two years you are eligible for medicare. I would apply right away as the process is slow. I get around $1250 a month which is not enough to live on, but I have workers compensation as well, for now. I can tell you going through the process for disability retirement and SSD has been the most traumatic events in my life. I would go back to work in a second if I thought I could hack it. I hope you get well and don't have to deal with this BS. There are others on this list who are also trying to get SSD and taking their lumps. You need to be TOTALLY disabled from all work for at least one year. Your doctor needs to say that loud and clear.

Re: The article, Brian

Kathy G on 7/09/02 at 19:24 (089379)

Hi Brian,

Fascinating reading and kind of scary, isn't it? We seem to attach such importance to celebrity these days, rather than to a person's intelligence or education. On the other hand, I greatly admire celebrities who are willing to lend their name to a cause because at least they are generating attention to a good cause. The only mildy well-known person, here in New England, who had PF was a Red Sox player, John Valentin. I think he plays for the Mets now. He was out at least one season with PF. I don't think he wanted to call much attention to it because he still wanted to be traded and he knew no one would take him if he complained of a chronic condition that could affect his playing time. I have no idea how he's doing or if he's even still playing. Maybe Nancy S, our baseball fan, knows. I also remember hearing that one of the Celtics had it but again, because they are athletes, they're not going to make a big deal about it since it could affect their livelihoods.

Re: The article, Brian

J. King on 7/09/02 at 21:14 (089387)

Joltin Joe Dimaggio had heelspurs very bad indeed. He had some kind of surgery on them and really suffered. It can happen to anyone and is devastating.

Re: The article, Brian

dave r on 7/10/02 at 07:47 (089402)

Along with Mark Mcguire (Big Mack). He had heel spur surgery on both feet.
I wonder if that why he retired?

Re: The article, Brian

Kathy G on 7/10/02 at 19:40 (089441)

Wow, I can't even imagine playing baseball with PF! Of course, my family would tell you that they couldn't imagine ME playing baseball when I was at my physical best!!

Those guys must have been in agony the whole time. I don't think that during Dimaggio's (sp?)time they had that many drugs. I mean, it's not like they could give him codeine before a game; he wouldn't have been able to function. How much do you want to bet they loaded Mark Mcguire up with novocaine before each game. Then again, maybe not. I mean, when I had novocaine in my foot, I sure couldn't have run. But I know they do that a lot with football players although from what I've read recently, they don't do it as much as they used to. Interesting, why do we know about baseball players who have had it but not football players. They run equally. Of course, aren't baseball shoes really horrible for your feet? Then again, I suppose football shoes are, too. Well, enough rambling for tonday!

Re: C'mom celeb's, time to step up, we need you !!

BrianG on 7/10/02 at 22:05 (089449)

I also thought the celeb article was a real eye opener. Personally, I think we could really use one (celeb) to help us with some of our causes. One would be to ensure all the insurance companies had the most up to date information on ESWT healing rates. I'd also like to see someone lobbying SSD to have PF and TTS added to their approved list of disabilities. The average Joe is just not going to get it done, unfortunatly. So, we wait for better times. It would be so much better, psychologicaly, if we didn't have to fight for everything we need!!!

BrianG

PS Just fighting for an MRI, with my HMO, took a lot out of me. Not to mention it caused a few hard feelings.

Re: Wheelchair

Suzanne D on 7/05/02 at 21:06 (089195)

That truly does not seem at all fair, John. Anyone who has had feet problems can attest to the fact that it's about as disabling as you can get. It makes me think of that old song about 'walk a mile in my shoes before you criticize and abuse...'.

I'm glad the chairs were available for you but sorry you were in so much pain you had to use one.

Hang in there,
Suzanne :-)

Re: Wheelchair

Jean P. on 7/07/02 at 19:50 (089256)

I know where you are coming from - a granny using a walker beat me into church today (I wanted to hold the door open for her). Hope you feel better soon.

Re: Wheelchair / SSD ????????

BrianG on 7/07/02 at 19:59 (089257)

So, how do we get the SSA to change their guidelines, and add PF to the official list of disabilities? If only Michael J. Fox had developed cronic PF, instead of Parkinson disease! We need a celebrity spokesperson, if the doctors and pod's will not help to change the rules. Sorry about the dig, and I know it's not their job, but it would be in the best interest of the patient. I'm not thinking individual doc's, but the orginazations they belong to, could be a big help.

Remember, Pf and Depression are much more likely to be approved by the SSD folks, if anyone is thinking of applying.

BrianG

Re: Wheelchair / SSD ????????

J. King on 7/08/02 at 07:00 (089277)

Yes, get a doctor to go over you with a fine tooth comb and diagnosis every single disability or illness you have and include all this when you apply for SSD. I got mine this way by having a list of ailments besides PF. What Brian says about depression is true. Mental and physical is a better combination than just the physical or mental. My problem is that I look fine until I have to do things like walk and stand. It would be better to have lost a leg than PF for disability purpose.

Re: Celebrity update

BrianG on 7/08/02 at 12:52 (089296)

Kind of a coincidence, but this article just appeared at ABCnews.com today. Jerry Lewis has raised 1.6 Billion dollars for Muscular Dystrophy!!!!!! Copied without permission.

BrianG


Celebrities like Michael J. Fox have become influential spokespeople in raising medical research funds.
(Joe Marquette/AP Photo)
Star Power and Medicine
Celebrity Spokespeople Help Raise Research Funds But Is Their Influence Too Great?
Commentary
By Jonathan D. Moreno
Special to ABCNEWS.com
July 8
Tom Duffy's 9-year old son has spinal muscular atrophy. To raise money for research on the disease, Duffy sat on a Scranton, Pa., billboard for 24 hours. 'Honk if you care! Fight spinal muscular atrophy now!' He raised $28,000 for SMA research.
AIDS has Magic Johnson and Elizabeth Taylor as celebrity fund-raisers, breast cancer has Ann Jillian and Rosie O'Donnell, paralysis has Christopher Reeve, sickle cell has 'T-Boz' Watkins, juvenile diabetes has Mary Tyler Moore, multiple sclerosis has Montel Williams, and Parkinson's has Michael J. Fox.
And of course, with $1.6 billion raised for muscular dystrophy, Jerry Lewis is the champion celebrity fund-raiser of them all.
But Duffy's son's disease has no celebrity. Neither does lupus, which strikes more people than AIDS, sickle cell anemia, muscular dystrophy, multiple sclerosis and cystic fibrosis put together.
Medical research follows the money, and the federal government has a lot to give out of your tax dollars, of course. The National Institutes of Health alone will invest more than $20 billion in research this year.
The NIH is about the only federal agency to have its budget increased, and that has a lot to do with the visibility of celebrities who advocate for new treatments. So does the success of some foundations, particularly those with celebrity names attached.
The Celebrity Draw
Celebrities are effective with Congress and in the media because most of us find them so intriguing. Last May, Julia Roberts testified before congress on behalf of $15.5 million in funding for Rett syndrome, a serious neurological disorder affecting young children, especially girls. The disease is tragic, but it certainly helps that members of Congress get a meeting with Pretty Woman while hearing about it.
Politicians and media execs pay attention to celebrities because they think that voters and consumers do. And for good reason. In a recent poll, more than 75 percent of Americans said that the role of the famous in medical research is just about right.
The simple fact is that a famous and attractive person is the best advocate for just about any cause. If they also have the disease themselves, the message only gets more powerful. It's hard to say no to anyone who is suffering, let alone someone whose fame we find fascinating.
Yet we're entitled to ask if this is the right way to set priorities for science. Not all diseases can get equal attention, so there needs to be some way to sort out society's goals. Does star power distort the process?
There is no single 'right' way to fund medical research. Public funding always involves politics, and it should it's the public's money and politics is the way the people express themselves. Private funding always involves private interests and in a free society we can hardly complain about that.
But we can tell when we are seriously off track. Good science should not be overwhelmed by political and personal interests. Until advocacy groups for women, gays and minorities gained strength in the 1980s, Congress tended to focus on diseases that afflicted older white males. We are now more sensitive to the need to distribute both the burdens and the benefits of medical research more fairly.
Influencing Science
Another potential problem is that science is closer to breakthroughs in some conditions than it is in others. In a world of limited resources and lots of good causes, a few celebrities can make a big difference, not always in the most promising direction.
Consider the non-celebrity diseases, like SMA and lupus. A compelling celebrity appeal can take us off track by making us focus on a specific disease to the disadvantage of others with at least a powerful a case.
Recently Julie Andrews lent her prestige to an effort to study how to restore damaged vocal cords. Her singing career ended due to a surgical mistake. A serious loss, to be sure, but it is reasonable to ask how it stacks up against other causes, while a cure is at best many years away.
We should also be wary of stars' medical advice, even though they have the best of motives. After Katie Couric's husband died of colon cancer at age 42, she recommended screening for people that age, but doctors don't.
Many celebrities have urged early prostate cancer screening, though there is great disagreement among experts about it. Not only are there costs in time and expense, but false positives can cause needless grief and even unnecessary medical procedures. In many cases of early disease detection, nothing can be done anyway.
This seems to be part of a new trend. Michael J. Fox, who has Parkinson's disease, thinks the relatively high incidence of the malady among those who worked on a TV show with him is suspicious. He is pushing a theory that the disease is caused by a virus, but hardly any scientists think this is a promising line of study.
Similarly, Christopher Reeve is said to be concerned about the direction of spinal research. We may be entering a period in which celebrities direct the course of science rather than scientists.
In the end, the greatest service that star power can do is call attention to the tragedies that follow from a serious disease and help us realize the need to support science.
The rich and famous do a service in reminding us that even they can be sick and afraid. In this way, they keep us aware of our common humanity, whether our disease has a celebrity or not.
Jonathan D. Moreno is director of the Center for Biomedical Ethics at the University of Virginia.
Copyright 2002 ABC News Internet Ventures.
Click here for Press Information, Terms of Use & Privacy Policy & Internet Safety Information applicable to the site.

Re: Wheelchair

kay on 7/09/02 at 14:14 (089360)

j. king did you seek an attorneys advice or help? the ssd rules states if you cannot work for a year or more you should be eligible. i have been off work for nearly 4 months now and just now had my first surgery. if it is a success i will have the other foot done after this one is better, which won't be for some time. but i think it will take me off for over a year by the time i am healed from my second surgery. my employer will send me a form letter stating i have to sign up for ssd after i am off for 6 months. i think if i am off for a 14 months i should collect it for 14 months, even if its back pay with the help of an attorney. i am not one to sit home and collect welfare but i have worked all my life and when i need the help i expect to get some back temporarly. i couldn't imagine not ever going back to work. but i've paid my dues and i will see an attorney if i have too.
kay

Re: Wheelchair

J. King on 7/09/02 at 16:21 (089365)

I got my SSD without lawyer. I had a lot of medical documentation and no way was I going back to my job. You can't start getting SSD for 6 months after you have become totally disabled. I don't know what they expect you to live on for 6 months but they don't really care. SSD is very tricky and many lawyers will not even look at your case until you have been turned down a couple of times. SSD is not welfare and you have earned it. I don't think many people actually return to work after getting SSD because you have to be so disabled to get it. Usually, that means permanently disabled! Also after two years you are eligible for medicare. I would apply right away as the process is slow. I get around $1250 a month which is not enough to live on, but I have workers compensation as well, for now. I can tell you going through the process for disability retirement and SSD has been the most traumatic events in my life. I would go back to work in a second if I thought I could hack it. I hope you get well and don't have to deal with this BS. There are others on this list who are also trying to get SSD and taking their lumps. You need to be TOTALLY disabled from all work for at least one year. Your doctor needs to say that loud and clear.

Re: The article, Brian

Kathy G on 7/09/02 at 19:24 (089379)

Hi Brian,

Fascinating reading and kind of scary, isn't it? We seem to attach such importance to celebrity these days, rather than to a person's intelligence or education. On the other hand, I greatly admire celebrities who are willing to lend their name to a cause because at least they are generating attention to a good cause. The only mildy well-known person, here in New England, who had PF was a Red Sox player, John Valentin. I think he plays for the Mets now. He was out at least one season with PF. I don't think he wanted to call much attention to it because he still wanted to be traded and he knew no one would take him if he complained of a chronic condition that could affect his playing time. I have no idea how he's doing or if he's even still playing. Maybe Nancy S, our baseball fan, knows. I also remember hearing that one of the Celtics had it but again, because they are athletes, they're not going to make a big deal about it since it could affect their livelihoods.

Re: The article, Brian

J. King on 7/09/02 at 21:14 (089387)

Joltin Joe Dimaggio had heelspurs very bad indeed. He had some kind of surgery on them and really suffered. It can happen to anyone and is devastating.

Re: The article, Brian

dave r on 7/10/02 at 07:47 (089402)

Along with Mark Mcguire (Big Mack). He had heel spur surgery on both feet.
I wonder if that why he retired?

Re: The article, Brian

Kathy G on 7/10/02 at 19:40 (089441)

Wow, I can't even imagine playing baseball with PF! Of course, my family would tell you that they couldn't imagine ME playing baseball when I was at my physical best!!

Those guys must have been in agony the whole time. I don't think that during Dimaggio's (sp?)time they had that many drugs. I mean, it's not like they could give him codeine before a game; he wouldn't have been able to function. How much do you want to bet they loaded Mark Mcguire up with novocaine before each game. Then again, maybe not. I mean, when I had novocaine in my foot, I sure couldn't have run. But I know they do that a lot with football players although from what I've read recently, they don't do it as much as they used to. Interesting, why do we know about baseball players who have had it but not football players. They run equally. Of course, aren't baseball shoes really horrible for your feet? Then again, I suppose football shoes are, too. Well, enough rambling for tonday!

Re: C'mom celeb's, time to step up, we need you !!

BrianG on 7/10/02 at 22:05 (089449)

I also thought the celeb article was a real eye opener. Personally, I think we could really use one (celeb) to help us with some of our causes. One would be to ensure all the insurance companies had the most up to date information on ESWT healing rates. I'd also like to see someone lobbying SSD to have PF and TTS added to their approved list of disabilities. The average Joe is just not going to get it done, unfortunatly. So, we wait for better times. It would be so much better, psychologicaly, if we didn't have to fight for everything we need!!!

BrianG

PS Just fighting for an MRI, with my HMO, took a lot out of me. Not to mention it caused a few hard feelings.