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Thread: Positive strategies & inspiration needed

  1. #41
    What a fabulously positive and inspiring attitude!

    Doug

  2. #42
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    Yes indeed, a wonderful attitude. And you’re dead right about appreciating the things we can still do. I had an appointment at the MND clinic today and was told, given the speed of my progression, my likely prognosis is 1 to 2 years. It was hard to hear, even though I of course know the statistics. In a funny kind of way tho it has galvanised me into stopping feeling sorry for myself (I have become depressed and insular) and start appreciating each and every day. I’ve withdrawn from my wife and she deserves SO much better so I’m now determined to make our remaining time as joyful as possible. Besides, my respiratory levels are still completely normal so I could have years left in me yet!

  3. #43
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    I wish I could feel more positive, spring and summer coming and I feel nothing really to look forward too. I must really try to snap out of it.
    Love to all,

  4. #44
    Forum Member Ellie's Avatar
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    Hi Sarah,

    Even though we know we've a terminal illness, it is still utterly shocking to hear healthcare professionals talk about a prognosis and it sure does focus the mind !!

    Quote Originally Posted by SarahWP View Post
    my respiratory levels are still completely normal so I could have years left in me yet!
    That is absolutely spot on, respiratory function is still the most important predictor of longevity in ALS, not how fast their limbs are deteriorating - I've known people still walking or still eating full meals and talking who have died.

    It may help to set yourself some realistic short-term goals too but it sounds as if you've got the right attitude.

    Big cwtsh to you.

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

  5. #45
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    Thanks Ellie, I’m hanging on to this belief desperately as hearing my prognosis so starkly knocked me back somewhat. Even if it’s true tho, all the more reason to enjoy every day as much as possible. Xx

  6. #46
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    I agree with Ellie, these healthcare professionals, we have enough stress to deal with.
    Sarah how is the Wav going?
    Sheila x

  7. #47
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    Haven’t been out in the WAV yet - we’ve had non stop visitors the last couple of days but plan to get out and about this weekend!

    Sarah xx

  8. #48
    Forum Member Ellie's Avatar
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    Hope you are all safe there, Sarah, and the WAV isn't floating off down the street !!

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

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