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Thread: Bob - Forum introduction March 2016, diagnosed June 2015

  1. #1

    Bob - Forum introduction March 2016, diagnosed June 2015

    Good evening everyone. My name is Bob (61 years) and I live on the lovely Isle of Wight. I was diagnosed with bulbar onset MND in June last year, just a month before my PhD graduation. Along with my family (wife and two adult girls) weíve had nine months to adjust. It appears the onset of my symptoms is slower than for many people with this condition. Iím still mobile and functioning pretty well, but thereís the relentless degradation of speech, eating capacity and strength bit-by-bit, and day-by-day. I had to quit most of my work last summer as I needed my voice to work.

    I have a very positive outlook, and have long been an Epicurean (Iím happy to explain that in more detail as time passes).

    When first diagnosed I thought it was exotic, as the incidence of MND in England, is approximately 2 cases per 100,000 people per year, but (as Lee Millard (onein400) correctly identifies), 2012 data shows that 1 out of every 232 die of the condition, whether the recent increase in this figure is due to a better diagnosis, an aging population or other factors is unknown. Iíve lived long enough to get it, and I now find itís a rather more common or garden condition than I first thought.

    I have a background in project management, so Iíve been project managing my own death. Iíve arranged new bank accounts for the family, sorted my pensions and power of attorney, got my PIP & mobility allowance sorted, given the hospital my advance decision on medical interventions, met the celebrant for my ceremony, chosen my coffin, started family counselling, had a peg inserted, and listed all those who need to be informed at the end. Now I can get on with the other stuff; family holidays, gardening, and standing down from a number of committees.

    The advice Iíve picked up on the forum (before I made this first posting) has been very useful, so thanks to everyone for that. I guess I am curious as to how the story develops, and the most helpful insight, so far, has probably come from the MNDA publications and the forum. The local MND group and the hospice staff have been splendidly matter of fact (yet still compassionate) about my condition.

    Neurologist Dr Allan Ropper says in his book Reaching Down the Rabbit Hole (2015) that ďonly the nicest people get ALS [MND]Ē (p144). Itís probably not at all true, but itís good to see it in print.

    I send my best wishes to all of you using the MND forum, whether you, or a member of your family, has the condition, or whether you are just looking to get the latest news as a carer or professional supporter.


  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Welcome to forum Bob;

    Wow, you are organized. Glad to hear that you've found the forum useful and that your progression is fairly slow.

    So, what is an Epicurean?
    a disciple or student of the Greek philosopher Epicurus.
    a person devoted to sensual enjoyment, especially that derived from fine food and drink.

    Sounds good, best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Welcome to the forum Bob

    I am quite overcome by your project managed approach. That is incredibly organised and really impressive.

    I am so pleased you have found the forum helpful. I am hugely impressed by it and the number of really helpful people here. I love the idea that only the nicest people get ALS! Certainly I have only come across lovely people with it so far.

    I have bulbar onset too but was only diagnosed in November but it certainly feels a more common disease once you get it than it ever did beforehand. I was taken aback a few days ago when I discovered my daughter's headmaster when she left primary school has MND too. I don't think I expected to know someone else with it so it feels even less rare now.

    I do hope you will continue to enjoy the forum. There seem to be a surprising number of us diagnosed with bulbar onset MND.

    Oh, and I just assumed epicurean was tied in with Terry's second definition. I am now gripped to know which type of epicurean you are.

  4. #4
    Welcome Bob

    Sorry for your diagnosis. You have come to the right place for great advice, support, plenty of knowledge, and of lots of friendship as well.
    All the best to you and your family.


  5. #5
    Forum Member Jan's Avatar
    Join Date
    Jun 2014
    Ashford Kent
    Welcome Bob, lovely Isle of Wight indeed! Currently sat in my holiday home in Shanklin which we completed the purchase on Thursday, I am limb onset, still walking (just), and like you I have pretty much got everything sorted and now just enjoying each day as it comes. Life does not end with diagnosis, we just take a different path

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Welcome Bob,

    I am sorry that you have developed this disease but you appear to be philosophical about living with it. Like you, I have sorted my affairs so that there are no misunderstandings. We know that everyone dies at some point but I guess having MND puts it into perspective and by being organised it makes it easier for your loved ones.

    You list the many things you have sorted but no mention of voice banking. Did you manage this before your voice weakened and have you got a speech aid?

    In Terry's post I hope you are the latter but if not then I will claim that spot as my life for many years has been way, although as this disease progresses it becomes more difficult.

    Best wishes
    Iím going to do this even if it kills me!

  7. #7
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Bob,

    Sorry to welcome you aboard!
    Keep up the Epicurean interest – good nutrition is vital for your wellbeing, however it’s delivered! I get most of my nutrition and fluid intake via my peg, but am fortunate to still eat and enjoy a daily lunch. Today was a delicious Risotto, easy to eat as minimal chewing required! I too take a daily Vitamin C effervescent tablet – Ĺ on my tongue for oral hygiene and Ĺ in water. Despite me having a big mouth, the full tablet on my tongue leaves me foaming like a rabid dog

    Your PM skills have been well tested; may I be so bold as to consider leaving your brain & spinal cord for ALS/MND Research? I wouldn’t normally suggest this, but you seem to be that type of person – forgive me if I come across as insensitive!

    I do query the 1 in 232 deaths though. ONS data over the past few years for deaths from MND (category G12.2) as a fairly consistent 0.3% or ~1500 of 503,000 deaths, making the figure over 1 in 340. Still not great but the very low incidence and prevalence figures skew the reality, as those having the disease tend not to stick around!

    Enjoy the gardening and holiday planning. Looking forward to hearing more from you.

    Take care,
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Hi Bob,
    Welcome to the forum,
    I also had the diagnosis bulber onset be in June last year and I'm now 60
    Can't beleve you have organised so much, wow. I've chosen songs for my funeral and wrote letters to the family, that's about it. Not sure I can handle anymore.
    Glad you have been reading the forum, we all learn so much from it.
    Mags xx

  9. #9
    Hello Bob
    U r so brave and pretty amazing, my mum is 62 but we r at very early diagnosis, we still totally deverstated and can't even talk about it yet, we kinda still in denial, I cry all the time, life is all too confusing at the moment.
    Anyway thank u for posting.

  10. #10
    Sharon, Mags, Ellie, Barry, Jan, CC, Susan & Terry (and all),
    Thanks for your good wishes. Barry asked about voice banking but I am very fortunate to have all those matters managed by my wife and family.

    The consequences of the condition can certainly be upsetting, and the local hospice here has been very helpful with counselling. The lateTerry Pratchett called his early-onset alzheimers an “Embuggerment”. I like that terminology, MND is certainly inconvenient.

    Susan asked what type of Epicurean I was. There are more subtle things about Epicurus (341–270 B.C.E.) than just enjoying a good life, the food and drink. One is that he prized friendship above all else (and that has defined my life). Another is that he said “Death is nothing”. He considered the gods did not interest themselves in human affairs, and so human reverence to them was irrelevant. Lucretius, interpreting Epicurus, considered the origins of religious superstition, which led to a dread of the gods, and because of their association with an afterlife, it resulted in a fear of death. That led to the quote above. I am free of religion, and any associated fear of death.

    My local vicar, a great friend, (vicars have been my friends even though I am free from belief) said Epicureanism lacked compassion, and I acknowledge it is not easy for my family. My concern is for them, not for myself. I've had a great life, defined, as I say above, by my friendships, and there is much still to do.


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