Monday, 23 October 2017

MS in the news today

You may have seen this BBC news article today about two pwMS. One of which had a well-planned trip to Switzerland to end his life. After meeting a local woman with MS he appears to have a new outlook and has postponed his trip to Switzerland indefinitely.

(Image is a screen shot of the article on the BBC website)
http://www.bbc.co.uk/news/disability-40042731

The really interesting thing here is that the main way in which the woman has changed his views is through helping him find access to the services he is entitled to. I think this serves as an important reminder that many pwMS do not access all the care, facilities and services that are available to them. If you have such concerns, there is plenty of information and advice online, including the MS society website: https://www.mssociety.org.uk/ms-support

Or maybe people have their own tips to share on accessing services?

13 comments:

  1. Programmed death in Switzerland. What can be nicer?

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  2. Doesn't seem like the services changed things that much
    "This is bonus time, but I'm realistic about it, my plans aren't cancelled."

    The problem is these neurological diseases have mostly
    no therapy so they absolutely destroy people's brains. Robin Williams
    had a good life till Lewy Body Dementia struck.


    A doctor had progressive supranuclear palsy same disease
    that killed Dudley Moore and also went to Sweden.

    she said: "I am just so tired of being dependent on people. But I have been forced to die in a strange country, not at home."

    "I know that I am more fortunate than many other people in my situation in that I have the knowledge and the finances and the support of my family to make assisted suicide in Switzerland possible. I believe that to die with dignity should be everybody's right."

    http://www.telegraph.co.uk/news/uknews/1508714/By-the-time-you-read-this-I-will-be-dead.html

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  3. "This is bonus time, but I'm realistic about it, my plans aren't cancelled."

    I'm not sure I'd consider that 'a new outlook'.

    What is it with barts ms? You can't even bring yourself to report accurately when it comes to facing realism of living with ms.

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  4. The real measures of the success of MS therapies are stopping people needing wheelchairs and stopping people committing suicide. I don't care about annual relapse rates or gd enhancing lesions. I want treatments that will allow me to walk my daughter down the aisle in 5-10 years time or will allow me to still play golf when I'm 55 (I'm 45 now). The annual neuro fest kicks off in Paris tomorrow. No doubt they'll be lots of backslapping and a good time will be had by all. Perhaps the MS sufferer from Scotland should attend to show the real impact of MS. Care packages are all very good, but he'd swap them for a chance to walk down to his local pub or get back to employment. Where are the neuroprotective and neurorestorative treatments? The silence is deafening!

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  5. My experience is that you may have to challenge inadequacies in provision, which is fine if you have the personal skills to do it and not fine if you're ill and/or scared of authority.

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  6. All very valid comments. Obviously, this man is still facing disability on a daily basis and is still considering going to Switzerland when he feels ready.

    Treatments for MS is something we are all fighting for but we have to face the reality that for some, these treatments will come too late, and people may reach a point where they feel that an assisted death is the best option for them. Assisted death is a hot topic and very emotive for many people, so is perhaps a discussion for another day!

    For me, this article highlighted that this man now feels he has a little more time because he now has access to carers and an electric wheelchair. Regardless of whether or not he ultimately takes his trip to Switzerland, his access to these things have clearly made a difference, at least in the short term. It's sad to think that people aren't accessing all the services available to them, which could improve their quality of life.

    ReplyDelete
  7. http://www.mirror.co.uk/news/uk-news/if-youre-reading-im-already-9427571
    If you're reading this - then I'm already dead': Grandad reveals why he has ended his life at Dignitas

    He said: “I can no longer walk. I have to be helped out of bed and dressed by my wife. If I were to stand up I’d just shake and fall over

    “I have terrible tremors which make it difficult to pick anything up, my body aches all over and I have a constant deep, deep fatigue which is relentless.”

    He was also incontinent and had lost the sight in his left eye.

    MS makes you want to give up, it takes away all incentive and all impetus. I do have some quality of life but it’s hard to make the effort when it’s so poor. And there’s no hope.

    ReplyDelete
  8. "Assisted death is a hot topic and very emotive for many people, so is perhaps a discussion for another day!"

    ..yes..another day..one far..far away in the future.

    Jimmy Page:
    "(on losing creativity to play) there's always that point that might happpen to you..or you're too old to pick the guitar up..and we're just trying to keep that day far..far away and out of sight."

    2:48
    https://www.youtube.com/watch?v=KVcS7KDf60s

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    Replies
    1. Not sure I respect what JP says anymore...another 1970s paedo....I am led to believe based on BBC documentary

      Delete
    2. Whatever he may be, JP is right. I have PPMS and can no longer play guitar after over 40 years in bands and teaching. I find this aspect heart-breaking and I often breakdown.

      I am also the Scientist who takes Steroids, as the med profession are, in my opinion, ....useless. People like me want action, not platitudes. I don't care if every 'T' is crossed or 'I' dotted - if something shows promise, I will give it a go.

      I also do not believe in some fairy tale god (the physicist in me). When I can no longer cope, Bye Bye..........(by whatever method available).

      When I have tried to get help and access services, I have a mountain to climb - the simple feat of obtaining a suitable wheel chair demonstrated to me that 'you are on your own'!

      Delete
  9. While it’s great for the guy and heart-warming to hear how another PwMS could help him get some equipment and support – this is one “good news” case.
    There is some generic information online – but substantial numbers of older people and those living in poverty don’t have access to online information and/or digital skills.
    Finding out what services, equipment, eligibility criteria and waiting lists there are in a specific place is difficult, time-consuming, confusing, frustrating and sometimes expensive as well (costly telephone calls). It’s often unclear what is health-related, and paid for by the NHS, or care-related, paid for by a local authority. Then there’s the complexity of different NHS departments, healthcare trusts and clinical commissioning groups. And then you have the nightmare of trying to claim benefits like PIP !
    Navigating through this is hard enough for confident, able-bodied, cognitively unimpaired, administratively competent and dogged individuals – it is nigh on impossible for the rest of us.
    Until you go through it for yourself or on behalf of a loved one you cannot appreciate how labyrinthine, demoralising and lengthy the process is. The even more sobering aspect is that will have to endure it more than once.

    ReplyDelete

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