Quality of Life for MS Patients: Is it Health-Related? (Part One in Series)

2/13/09 5:16pm

I think quality of life is in the eye of the beholder, as individual as MS itself.

For me, good quality of life includes the state of health care -- not having access to basic, affordable health care would seriously jeopardize my quality of life.

A decent quality of life doesn't necessarily mean doing all I want to do, but having the abililty to feel productive in some way and to enjoy simple pleasures. Anything above and beyond that is a bonus.

And, yes, end-of-life issues factor in.

Lisa Emrich, Health Guide

2/22/09 11:55am

Mandy,

I believe that you and I see things very much eye-to-eye. Absolutely, quality of life is subjective and individual. We each have different needs and desires, while those may change over time. Adaptability is an amazing human capability which I feel affects quality of life as well.

Access to affordable health care and insurance (which is not necessarily the same thing) is vital to maintaining a stable quality of life. Simple things like my therapist suggesting that I pay $10 per session after I've exhausted my insurance coverage for the year (and my co-pay had been $35 anyways) most definitely improves my quality of life.

Now that I've gone on and on, it seems that there is much more to discuss with this topic.

momdukes

2/15/09 3:23pm

You know when I think of quality of life; if I had MS or not the older that I am, I am blessed to get the quality of my life, because it is going to change regardless. News flash, I could take all of the vitamins that this world can produce, excerise 24/7 but one thing that I can never do is out run "Father Time" no one can. If it is not MS it will be time and age. So choose your poision. They both hurt, I am sorry. Neither can be prevented, they are working on MS but they will never find that fountain of youth, no matter how long they look. So we just have to deal with the cards that life has dealt us, no one ever said that life was fair. So brush the dirt off and get up smile and keep on going. The old gospel song says "trouble in my way, you have to cry sometimes." wipe those tears away and keep it moving, some things we just cannot change! I just love life!

Lisa Emrich, Health Guide

2/22/09 11:58am

Never outrun Father Time. How wise you are Sherry. Life changes, all we can truly hope for is that we are able to adapt and to continue to thrive. Thank you for continuing to share your thoughts.

Denise Coleman

2/16/09 2:20pm

Thank you for another interesting Post. My personal opinion of quality of life is similar to Mandy's. Good medical care is the very foundation needed to have quality of life, especially if you live with a chronic condition. And of course you need the basic elements of life such as, food, shelter, etc.

Moving beyond that I believe it is important to be able to pursue the work and social activities that one desires, and I would be lying if I said that my quality of life has not been affected since I had to leave work. Not just in a financial sense either. I no longer have the ability to use my skills and interact with the people I admire and like to work with. I can do all the writing and all the volunteer work in the world, but it will never replace the sense of accomplishment I got from my work and the non-profit organizations I was able to assist.

The other point I want to make is that I am astonished to hear that documents such as the two you linked to in your Post actually exist. I am a firm believer and advocate for doctors to learn more about how chronic pain and chronic illness impact on their patients' lives and how this interacts, rather should interact, with their medical care. I wonder how many doctors know these documents, or even that this way of thinking, exists.

I look forward to your future Posts on this topic. And thanks again.

Lisa Emrich, Health Guide

2/22/09 12:25pm

Basic elements and good medical care. You've summed it up.

I am fortunate to have those needs met. It may take some money to do so, but at this point I do not need to worry.

It is my physical therapist who really turned me onto this topic. She is all about improving quality of life for neurological patients and has been very kind to share material she receives as a professional working with MS patients.

The Consortium of MS Centers is a wonderful organization which helps to train and share information among MS professionals. I am fortunate that my MS team are amongst those professionals who orginated this organization. My particular MS nurse is one of the trailblazers in this field behind the scenes.

I hope to be able to bring more of these resources to light and get the discussion moving towards improving Quality of Life overall.

Salt Lamps

2/17/09 1:40am

I accredit bent of activity is juice the theory of the beholder, since innate being MS itself.

For me, deserved specialty of game includes the make apparent of health trial -- not having advance to basic, affordable health strain would seriously jeopardize my complex of life.

A candid style of functioning doesn't necessarily shocking strife outright I appetite to do, but having the abililty to sense hip leverage some channels and to groove on standard pleasures. Anything considerable also beyond that is a bonus.

And, yes, end-of-life issues portion in.

Salt Lamps

momdukes

2/22/09 7:26pm

You know MS robs all of us of something very precious in our lives. Our independence to be who we really are, and do to whatever it is that we do best. I to had a wonderful job. I helped and talked to people who were in need all the time. I cried with them, I fussed at them, I reasoned with them I gave them life advice. MS took all of that away from me. I was a total independent person. That is what MS does, it takes. But it is up to us not to let it win. I refuse. No I cannot walk and get around like I once did. I can no longer wear my pumps, which I enjoyed more than life. I do not have the energy I once had I had more stamina than the Eniginzer Bunny, but MS has taken all of that away from me. My bladder problems always make me scope out the bathrooms first. Even though I take medicine, I always wear those super huge Poise Pads just as a back up. I am no longer able to work or enjoy the company of those wonderful coworkers, but life does go on. So it is up to me to do what I have to do to keep going so I must do what I have to do. I have always said even before the Monster attacked me, “nobody loves me like me.” The doctors are doing what they can to find a cure, but MS is not the only illness that is on the horizon, so we have to share. I am willing to do that, simply because I hate suffering on any level. My comments were not to make anyone feel bad; if they did for that I apologize. I just choose to make the best out of my life, MS and all. I try not to let anything or anyone stand in my way. Help is coming it may not come in my life time, but those behind me will benefit from my suffering, I am truly all right with that. Everybody with MS should do what their doctor says, exercise eat right, and take your meds. Know that help is on the way. I just feel like with anyone, your quality of life is what you make of it; sick or not. We will make it, dragging one foot behind us, literally. But we will. We will help each other. Together all of us MS’rs are a force to be reckoned with! Thank you for setting me straight, I have a tendency to stray off the beaten path. Sherry

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