Quality of Life

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Needless to say, we would all rather NOT have MS. However, the simple fact of the matter is that we do have MS and life does go on in spite of this complication. It seems that the following article was mis-interpreted by many of us. The article surely did not mean that we are happy with the losses we have experienced because of MS, the things that we may no longer do or any of the other complications caused by MS.

The article simply meant that most MS'ER'S get on with life in spite of this disease and make the best of their circumstances. Sorry I caused so much trouble by posting it.

Regards,

Tom

I'm sure not "satisfied" with my life. Sure, I'm glad to be alive and there are things I enjoy, but that doesn't diminish the losses. I have a horse who is my buddy but I can't ride him, or even take him out for walks like a dog. I'm not strong enough to deal with our occasional differences of opinion about where we're going. Nor can I even get up on his back. And this is a really good natured horse... I can take one of my dogs for a walk around the block, but the other has to wait for another day. I'm not at all "satisfied" with the appearance of my house, nor with the fact that I lack the strength and energy to have it up to my fairly lax level of cleanliness. I am not "satisfied" to give less than I should to my employer and family. Sure, I'm incredibly grateful I can still walk and do not have to use a wheelchair. But that doesn't equate to an acceptable quality of life. That's like telling someone who has lost an arm that their quality of life is unaffected once they learn to overcome their handicap.

Maybe you can tell that this article has pushed a button here? I absolutely hate it when someone tells me I should be happy with what I have. Yep, I still have a lot, but I also have every right to occasionally be angry about what I've lost, everyday abilities that are taken for granted by people who write articles stating the people with MS are "satisfied" with their quality of life. These may well be the same people who look at the fact that my car needs washing and decide I'm lazy. Or wonder why I don't get off my butt and pull the weeds in my yards.

Not being able to do the reasonable things I need and want to do is not satisfactory. I have learned to live with my limitations but that doesn't mean I find them or my life to be satisfactory. If that were the case I wouldn't be pursuing an improvement in my condition and overall health.

And what do they mean by "fully ambulatory"? I can go grocery shopping, I don't have to have someone drive me around the store, but does the fact that it hurts and requires a sit down rest when I get home change their definition of "fully ambulatory"?

Sorry, apparently I'm just going to keep ranting about this.

(MS)

----- Original Message -----

From: Bayuk

MSersLife ; MS Friends ; MSViews_Multiple_Sclerosis ; A Home away from Home a MS Support Board ; low dose naltrexone ; mscured ; MS-Christians

Sent: Wednesday, May 19, 2004 6:50 AM

Subject: [low dose naltrexone] Fw: People With MS Are 'Satisfied' With Life - Finding should offer hope to people..

----- Original Message ----- From: MS Friends

MS Friends

Sent: Monday, May 17, 2004 10:20 PM

Subject: People With MS Are 'Satisfied' With Life - Finding should offer hope to people..

New Message on MS Friends

People With MS Are 'Satisfied' With Life - Finding should offer hope to people..

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From: Rainbolt

People With MS Are 'Satisfied' With Life - Finding should offer hope to people with the disease, study findsMay 17, 2004By Gardner - HealthDay Reporter MONDAY, May 17 (HealthDayNews) - More than three-quarters of people with multiple sclerosis say they are "mostly satisfied" or "delighted" with their quality of life, a new study finds. The research, appearing in the May issue of the Archives of Neurology, complements an earlier study also done by Mayo Clinic researchers that found MS patients were not as physically disabled as previously thought. More than half (52 percent) were fully ambulatory, while only 14 percent were confined to a wheelchair, the first study found. The two studies combined should give hope to patients diagnosed with the disease, the study authors said. "Getting a diagnosis of multiple sclerosis is not a death sentence," said lead researcher Dr. J. Pittock, a research fellow at the Mayo Clinic. "It doesn't mean you'll have to stay in a wheelchair. Most patients have reasonably good quality of life, most stay ambulatory, most keep working." Other experts noted, however, that the new findings should not diminish the impact of the disease for some people. "We recognize that MS can be a very devastating illness for people," said LaRocca, director of health-care delivery and policy research at the National Multiple Sclerosis Society. "On the other hand, I think it is also true that many people who live with MS live very productive lives and are able to carry on with their lives in spite of the illness." Multiple sclerosis is an autoimmune disease that affects the central nervous system. The disease damages myelin, a fatty tissue surrounding and protecting the system's nerve fibers, resulting in an array of symptoms. These symptoms vary greatly from one person to the next, but can include fatigue, balance problems, vision problems, tremors and slurred speech. The progression of the disease is also highly variable from one person to the next. For the new study, the Mayo researchers asked 201 people with MS living in Olmstead County, Minn., to fill out questionnaires on their quality of life. This particular group of people represents all cases of MS in the county; they had already participated in several studies led by the nearby Mayo Clinic. The questionnaire included sections on pain, vitality, fatigue, social functioning, emotional well-being, mental health and the ability to perform daily activities. The scores were compared to those of people without MS. The questionnaire that was used, LaRocca said, "is the gold standard in terms of health-related quality of life." "When patients were asked to describe how they felt about their life as a whole, 142 (77 percent) were mostly satisfied or delighted." Not surprisingly, those men and women with MS had lower scores for physical functioning, vitality and general health. What was surprising was that both groups had similar scores on pain, mental health and social functioning. "You were more likely to have a worse quality of life if you have more disability, but it's not as strong as you might think," Pittock said. "Some very, very disabled people appeared to have very good quality of life." There may be several reasons why people with a chronic and potentially disabling illness such as MS report such a positive quality of life. "People with a chronic illness go through a coping process in which they adjust to whatever the disease has thrown at them," LaRocca explained. "Although initially they have to face particular losses and disabilities, most people learn to live with those and go on to have much less distress." There may also be a difference in the way people with MS rate their quality of life. "The other thing that seems to happen with people is that when they have lived with a certain level of interference in their health for a certain period of time, they seem to recalibrate their expectations," LaRocca said. Finally, about 25 percent of the Olmstead group was taking disease-modifying drugs for MS, compared with 40 percent to 50 percent of Americans with the disease, LaRocca said. This may indicate a lower level of disability. Pittock feels that because the study subjects included everyone in the county with MS, the findings are representative of people with the disease. "We think we're getting the full picture," he said.