Living with MS – a story yet to be written

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Conceptual model of quality of life for people with MS who are in a wheel chair an living at home. The model is developed directly from the themes that emerged after the thematic analysis (from Wiley Online Library)

Living with an illness means different things to different people. It is all encompassing, personal and anxiety provoking. I’ve been told by an MS patient that living with MS is learning to do the things you can, and also the things you can’t. Could this just be acceptance, or simply what’s comfortable, like the old times?

In this publication, a small group of MS patients living at home and are in a wheelchair were asked to share their experiences.

The interview guide used as a starting point

The findings from the interviews were then grouped into three sub-headings:

To be free and independent
When you lose functions, you become a little insecure and lose confidence. It was necessary to have a dialogue with my wife, and you actually discover that physiological limitations mean that you find other ways of doing things, and practical cooperation. So there are good solutions to that relationship with yourself, is the cornerstone for you to change the relationship with others.”

Threat to the self and one’s own identity
If some bosses manage to see some productivity in people with disabilities, then I think things could have changed for the better. I have an impression of facilitating in a workplace that they would rather not have. I’m happy to be asked to do something, even though in quotation marks it’s more work than just sitting here, but that someone needs me and that I can do something.”

Adaptation to MS
Of course a hope. I have a hope, of course I have. Do not give up hoping that your arm will get better. For me, it is with hope that is what I have when I get so bad.

They authors conclude that it’s important to maintain everyday life and experience, being a resource for the family. They maintain that it is also important to have hope and adapt.

I wonder how many of those with MS actually know how to do this or receive the necessary help.

Abstract

Nurs Open. 2021 May 30. doi: 10.1002/nop2.956. Online ahead of print.

Experiences of quality of life in people with Multiple Sclerosis who are in a wheelchair

Stine Torp Løkkeberg Gunnar Thoresen 

Aim: The study includes health-related quality of life for people in Norway with multiple sclerosis who live at home and are in a wheelchair (N = 6). The purpose is to show how they experience living with a chronic disease such as MS and how they perceive their own situation. How they value their own health and what leads to positive consequences is central to this study.

Design: The study has a qualitative design to show what health-related experiences they had while living with MS.

Method: The interviews were conducted in their home and later transcribed. An interview guide with open-ended questions was used. The transcribed material was analysed with a thematic analysis.

Results: Key themes were being free and independent, threat to the self and one’s identity, and adaptation to MS. Free and independent in everyday life was essential for all the informants. Being dependent on others for basic needs was something they sought to avoid. Adapting to the new situation of changing roles was a challenge that required a lot of them.

About the author

Neuro Doc Gnanapavan

16 comments

  • It is all encompassing, personal and anxiety provoking.–that more-or-less sums up what I feel. I’m in far better conditon than a lot of people, ie, looking at me, you’d never know I had MS, but it consumes my whole life.

    I don’t know if i would be able to live in a worse state. I would seriously condider ending things. I watche my grandma (who was like a mam) die of Motor Neuron 26 years ago, and it still haunts me the state she was in when she died.

    • Hi Ali – I picked those three points as they apply to every illness. As you age everyone faces their own mortality and starts to think about these things. You’re not alone in your feelings. My experience from this is that people matter and our hopes are an integral part of whom we are.

      • Your reply has finally broken through my pattern of all consuming MS thoughts. Thank you, I feel liberated!

  • “They authors conclude that it’s important to maintain everyday life and experience, being a resource for the family. They maintain that it is also important to have hope and adapt.”

    I’m not sure who funds this sort of “research”. My friend (56) is now in a care home with severe MS – no hope and adapting is not an option. MS stinks – it’s a crap disease. It’s insidious. Hope is greatest at the start when symptoms impact less on one’s life and you get sucked into the big hope of breakthroughs to “stop MS” etc.

    In reality, MSers have two lives – a life before MS diagnosis and a life after MS diagnosis. They are like chalk and cheese. The neuro researcher who develops a treatment to halt MS in its tracks (putting wheelchair manufacturers out of business) will get a statue on Parliament Square. Until then 120,000 MSers in the U.K. wake up each morning trying to live as best as they can facing challenges that 99% of the population cannot really comprehend.

    • Re: “The neuro researcher who develops a treatment to halt MS in its tracks (putting wheelchair manufacturers out of business) will get a statue on Parliament Square.”

      Alastair Compston and Alasdair Coles pioneered the early use of alemtuzumab as a treatment for MS. If alemtuzumab is used early a significant number of pwMS will have their MS halted in its tracks and in all likelihood will never need a wheelchair. The problem is not many people use alemtuzumab in this way; they prefer to wait until too much damage has occurred and smouldering disease has become irreversible.

      • “The problem is not many people use alemtuzumab in this way; ”

        Alemtuzumab is not used in u.s. don’t know if it’s $175,000 cost is
        the issue.

        • Any cost of a drug weighted against the cost of living with disability is cheaper, especially if it is a one off!

          • Yes..of course..but it didn’t have to be this way..
            Campath for cancer expense was minimal.
            Cancer gets cheap price..MS gets $$$…and neuros say nothing about it.

            “French drugmaker Sanofi’s Genzyme unit is pulling its cancer drug Campath/MabCampath from markets on both sides of the Atlantic in order to optimise the pending launch of the drug as a treatment for multiple sclerosis, according to reports.

            The company has decided to concentrate on marketing the monoclonal antibody – which has the generic name alemtuzumab – for MS instead in a different dose and under the trade name Lemtrada, in a bid to stop doctors from prescribing the drug off-label for the condition and equalise its price with market rivals.

            Sanofi – which acquired Campath through its $20.1 billion takeover of Genzyme last year – filed Lemtrada for MS in both the USA and Europe in June this year”

            http://www.pharmatimes.com/news/sanofi_withdraws_campath_in_us_and_eu_976762

          • Next Will it be Swiss drugmaker pulling its cancer drug from markets on both sides of the Atlantic

        • €7678,20 price for one injection flacon
          10mg/ml
          Flacon 1,2 ml

          Life before and after diagnose

          Except for my family, all people I know, including my lovely wife, I know them after diagnose. Nobody left from my first life, including some family too.

          I estimate that about 75% of the people in my life have ms, and / or are the people who work in my ms nursery home.

      • Well I never had a chance with Alemtuzumab and my slow PPMS. My ticket for the DMT ferry expired long ago. Cure – too late.

  • Nobody mentions luck but from what I see it’s up there with all the other determinants of MS outcomes – 1) the person with a stable personality and normal mental state pre-dx has a better chance of managing the hammer-blow of diagnosis 2) allied to that, if a supportive family exists, the burden will be shared 3) regaining in control will be easier if the person has the intellectual capacity to understand the issues and find the best way to manage them 4) anyone lucky enough to have money will have more choices around most aspects of MS, whether that’s respite care/holidays, physio, assistive aids or improved access to healthcare specialists 5) AND EVEN IF YOU’RE LUCKY WITH EVERYTHING ELSE, if your postcode isn’t a lucky one, you’ll be on the wrong treatment anyway.

    • Spot on. Although money, lots of, is sometimes detrimental, I’ve assessed people who’ve chosen the private route and self management, they have not fared well.

  • I know no one asked me, but I’m not sure what this is or where it is headed. I have a hard time tuning in to the purpose. Good psychological research mimics the direction and techniques of other scientific inquiry. A background and purpose is needed. Is one trying to build a new model of how “it all” works? What is out there already and what is incorrect about it? What is needed? Where did the current model discussed come from? Just someone’s thinking? Is there any evidence for its validity? Face only? And what will be done with the results?

    Life in a wheelchair, “is there still hope”? Isn’t there already lots of thinking on that? Being hopeful in a hopeless situation? There was a guy who survived the holocaust who opened a whole new way of thinking on living with strength through utter hopelessness. What about surviving depression, etc.? The amount of stuff out there already is HUGE. Are people with MS in a wheelchair in need, more so or differently, of psychological coping assistance, than others with MS? Perhaps, but we need evidence. It starts first with the descriptions, words and ideas, but has to progress to a harder evidence beyond a qualitative study.

    Some comments thus far are rather telling. Already we have suicide as an option (not good). The uselessness and waste of Psychological research is mentioned. I like the before and after diagnosis distinction, splitting it into two distinct paths of life. [The experience of the transition into a wheelchair might be useful to describe.] And then we get side tracked (it seems to me), discussing the cure, as the topic is instead “life in a wheelchair” (not how one might have avoided it but didn’t). We dabble with the ethics of big pharma. Then Kay brings up some really good points about what can tip the scale of overall outcome one way or the other, due in large measure, to one’s luck. (I like that one the best).

    So I reiterate- What is being done here?

    • TomPHD – you ask a good question; such research and there is a lot, are qualitative. At some point there are measures such as EQ-5D (health related quality of life measure) which are used to qualify cost utility of drugs, but useless for patients. I like your before and after and could be divided into new diagnosis and you come back to the same people after a year, 2 years to see what is what. Then I suppose disease specific models can be built.

      • NuevoDoc,, Thank you for seeking to diagram the challenge of living with MS. My hope is that more healthcare providers like you will begin to truly see PWMS and all of the baggage MS adds to our lives. Your diagram reminds me a bit of the Cognitive Triangle I learned about through therapy. Understanding and routinely self-assessing how my (good or bad) thoughts, behavior, and feelings are linked is one way I keep right side up. If anyone out there is struggling, consider seeing a therapist, even if just once or twice, to get a fresh perspective on new ways to cope.

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