Thursday, 14 February 2013

Clinic speak: DABDA or DABDAA

#MSBlog MS is emotionally exhausting! 

"Being a neurologist, who sees MSers, a clinical scientist, who studies the disease, and one who puts his head above the parapet, it is getting increasingly hard not to disappoint people."

"One of the issues that I have under estimated is the psychological impact that MS has on you and your families. This is compounded by disappointment when science and medicine, which promises so much, fails to deliver. This is particularly acute for relapse-onset MSers when you pass from the relapsing into the secondary progressive phase of the disease and you realise that the disease-modifying therapies are not working or have not worked."



"In my sociology course at medical school we learnt about Helen K├╝bler-Ross's five stages of grief, best known by the acronym DABDA (Denial, Anger, Bargaining, Depression and Acceptance). For those of you with relapse-onset disease, not only do you have to go through these stages when you are diagnosed with the disease, but you go through them again when you enter the secondary progressive phase of the disease."

"MS is a double-disease; it hits you twice!"

"The realisation that the DMTs have failed leads to the re-emergence of grief and the five emotional stages that go with it. The anger is more often than not directed at the medical team for being impotent to stop the disease; exposing unrealistic expectations, which were made to give you hope. As a result of being an outspoken critic of therapeutic nihilism - the blight of our profession - a proponent of early aggressive treatment and a disciple for the active and holistic management of MS, I seem to be taking more flak than most. It is emotionally exhausting!" 

"MS is a very personal disease and each MSer has their own story to tell. Researchers in general seem to forget this and simply think of MSers as a population of people with a disease. This is why our research day is so enlightening; the face-to-face interaction with MSers and their families makes you realise why you are doing what you do and its importance for individuals and their families. It helps you understand why MSers turn to alternative theories, and treatments, when science and modern medicine lets you down." 

"As an MSer you need to know about the stages of grief and recognise your emotional reactions to the diagnosis and the onset of the progressive phase of the disease. The truth is we don't have any therapies to stop or slow disease progression, but we are working on it. If you have symptoms that are impacting on your quality of life we can help. You would be amazed what a difference symptomatic treatment can make to your life."


"Finally, I would like to add an extra A onto DABDA for MSers, ie. DABDAA. The extra A is for anxiety. The uncertainty that a comes with a diagnosis of MS is unprecedented. If you need help coping with anxiety or any of the other emotions mentioned above please speak to your medical team."

30 comments:

  1. I think that being a neurologist must be one of the most emotionally draining jobs in the world. In the waiting area before a neurologist appointment i sometimes talk to other patients and everybody has a sad story

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  2. And we go through that process each time SPMS gets worse. Thanks for such an articulate sensitive Valentine's posting! X Pam

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  3. Replies
    1. http://www.guardian.co.uk/science/brain-flapping/2013/feb/14/valentines-day-how-to-woo-a-scientist

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  4. I remain in the same place I was when first diagnosed, Hope - I trust I can stay there!.


    Peter

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  5. Prof G,

    Excellent post.

    I really doubt anyone accepts the situation - not in the same way as someone who looses a limb. The progressive nature is impossible to accept. That's why treatments to stop the disease in its tracks are so vital - you can learn to adapt / accept a situation which is stable.

    Another emotion is envy. I know several people who have recovered from cancer or have had operations and they ahev got their life back - continued to work, started playing sports again. They workship the medics who have given them a second chance. Unfortunately. neuros don't offer this for MS patients (or for a range of other conditions). 10 years on and I'm still in shock that the neuro (called a Specialist, Consulant, expert) could have made me better again or at least stopped me getting worse (like the oncologist who treated my best friend). All I wanted was a second chance which the Specialist couldn't offer me. I'd guarantee that your working week woudl be so much more fulflling if you coudl offer patients a second chance i.e not get any worse, get a little bit better, get alot better etc etc. That's why we need treatments which deliver these outcomes rather than those which "may reduce relapses by 30%", "may slow down progression".

    But I'm thankful to you for your honesty and for trying to move things along. You deserve a medal for perseverance. I wish you were my neuro. Mine is quite happy to claim his salary and tell me there is nothign he can offer me!

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  6. I thought DABDAA was an alternate guitar tuning.

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  7. I didn't get much time to process my MS diagnosis. My husband went into panic mode and I had to be strong for him.
    Later, he looked after me so tenderly during the next relapse, that emotional balance was achieved. Then I started Rebif and a slow recovery to health.
    I've never thought 'why me?'.
    Yes, it screwed up my career as a musician, but some 13 years later, I'm about to resume that career. It's been a surprise, finding that I do have the energy to play after all - all this has happened in the last 2 years. I still have lesions, but thanks to an MRI in 09, showing a lesion for each relapse and no more than that, it gave me some reassurance that I'm okay for now.

    If I was to move into SPMS, then I know that it would be hard to accept/get my head around it, Maybe by then, there'll be another drug that'll help. You have to have hope.
    I'd prefer no more relapses, but missed the boat with the Campath trial in 01 and thankfully, I don't qualify for Tysabri. I'd take it if the relapse rate rose.
    I'll take anything - except venoplasty.

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  8. Prof G, I am worried about you. Please remember for every time you bear the brunt of peoples frustration there are many of us who really appreciate the work you (and your team) do. Not everybody is expecting miracles and there are some of us who do understand the pace of research and what can be realistically achieved in a lifetime. If you're feeling exhausted perhaps it's time for a holiday? Or maybe you've had enough of aeroplanes and just want to spend some time at home! Either way, take care of yourself. We need you.

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    1. Time for a holiday...Maybe prof G is listening..but look what happens then....two or more blog posts a day after only doing two a month
      Ski slopes here we come :-)

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  9. Re -"[As] a proponent of early aggressive treatment and a disciple for the active and holistic management of MS, I seem to be taking more flak than most. It is emotionally exhausting!"

    Oh, poor you, Prof G. The vitriol and chagrin you and your team are experiencing is most definitely the result of heightened expectations and unfounded declarations the neurology profession has made over several decades. Even now there is not conclusive proof that the myriad of expensive drugs on the market actually scientifically alters the course of one's MS. Yet you are more than happy to extol the magnificence these medicines even though you've experienced countless individuals that have been cajoled onto these poisonous treatments only to come out of it the other end with secondary progressive MS and perhaps even a touch of some other horrendous auto-immune disease bought on as a result of taking the drug.

    Even you know that the vast majority of MSers will develop SPMS despite the lethal junk your profession has advised them to ingest.

    Come clean by telling us whether the rate of SPMS has come down in your cohort of patients in the last ten years? Are you seeing people with MS defying the odds as a result of the new drugs you've given them? Is MS, in your eyes and clinical experiences, actually not becoming a disabling disease as it may have been in the '70s and '80s? Are you curing MS?

    The tone of this post suggests we already know what your answer will be.

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    1. Dr Dre's obviously still in the ANGER phase! Have you had counselling? It may help you. I am sure deep down you you may have some redeeming qualities.

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    2. Have you had counselling?

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    3. You obvious like to speak rap..is that spell with a c:-)

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    4. I wonder if Dr Dre has MS or is he/she just a spotty teenager venting off?
      Whatever the case he/she needs some new material.
      The appropriate response to his/her posts is meh....................
      Remember opinions are like a***holes, everybody's got one but many shouldn't be aired in public!

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    5. Finally someone speaks some sense MD2 - I am so convinced by the anti-everything attitude that this person has NO MS (gut feeling if you want & common sense). Teenager or not just plainly distured and verbally abusive spoiling it for real MS-ers. I repeat, plz ignore and don't waste your energy on trolls while there are many MS-ers with real questions!

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    6. Don't worry we have plenty of energy left to answer your questions as best we can.
      This is well worth a listen, particularly the last minute or so!
      http://www.bbc.co.uk/news/business-21470078

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    7. I am heartbroken at listening to that podcast. We need to legislate for the right to die in Britain rather than emphasising drugs that can't cure a degenerative disease.

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    8. I agree that we do need legislation to give those who want it the choice of a right to die at a time of their choosing. I strongly disagree that we stop the quest of seeking cures for neurodegenerative diseases.

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  10. Dr Dre speaks the truths and thats what this site cannot deal with .So answers back to anyone who speaks the truths are ones who are angry at truths being said .TRUTHS HURT

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    1. Dear little troller, I suspect that your concept of truth may not bear close scrutiny.

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  11. Thank you Dr G and MD2, a great post. At last some wise words. Not that you havent spoken wisely before , but this post struck a cord . Thank you

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  12. Any empathetic person would understand that the neurologists' job is not an easy or happy one, and meeting an empathetic neurologist goes a long way to helping patients cope with the psychological and physical probelms they encounter. However we have all met neurologists who cope with this emotional burden in different ways, often being distant and off-hand, arrogant even is the only way they know how to cope, and that makes being affected by MS even worse. Honesty and openness is best for patients, an understanding of how symptoms affect them and offering therapies that help them cope with them is the most helpful strategy, however it is not often available. Lack of sympathy and effective care in themselves cause the patient to go through psychological trauma. I have met Prof G and know that he is empathetic and cares about the plight his patients find themselves in, but there are many who do not seem to.
    In relation to the DABDA process I would like to add that as the mother of a person with MS, carer and counsellor the grieving process is not merely confined to the times of diagnosis and transition between RRMS and SPMS but happens much more frequently than that. Everytime a person loses some physical or intellectual ability, every time a person gains a new symptoms such as problem urinating, a new tremor, a new spasticity in a previously unaffected limb, a new emotional problem, a loss of memory event, that person goes through the grieving process once more. In the RRMS stage every relapse is accompanied by psychological trauma and dashed hope, every recovery brings hope that wellness will remain a little longer, but nothing is certain and hope will undoubtedly be dashed once more for most people with this disease.
    My hope for the future is that the same amount of resources will be spent on research as to the cause of MS as is now spent on less than effective treatment of symptoms.

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    1. "arrogant even is the only way they know how to cope"

      Having met a few I think arrogant is not a coping mechanism but the only way they know.

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  13. http://www.guardian.co.uk/science/brain-flapping/2013/feb/14/valentines-day-how-to-woo-a-scientist

    "Scientists are highly educated people with decent career prospects"

    The author of this piece is obviously an idiot or misinformed

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