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Positive strategies & inspiration needed

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  • Ellie
    replied
    Hope you are all safe there, Sarah, and the WAV isn't floating off down the street !!

    Love Ellie.

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  • SarahWP
    replied
    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

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

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  • SarahWP
    replied
    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

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  • Ellie
    replied
    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 !!

    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.

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  • Sheila
    replied
    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,

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  • SarahWP
    replied
    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!

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  • Doug Carpenter
    replied
    What a fabulously positive and inspiring attitude!

    Doug

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  • Maidinkent58
    replied
    I was diagnosed in September 2018 after a most horrific journey which began in April 2017 with a nasty fall, unbeknown to me there were 18 more falls to come. I am still able to walk with my frame, albeit very slowly, also speech is so slow, & I'm still able to eat, & my husband takes me out as much as possible. Having been a writer all my life I thankfully wrote so much before MND took my ability, so now I type on my computer--again very slow but I'm not prepared to give in. My entire journey to date is recorded in files, both digital & paper copies, I feel maybe my journal might help someone in the future. My philosophy in dealing with this obnoxious abhorrent disease is.............as hard as it is I must forget about all the things I CANNOT do anymore, & concentrate on the things I CAN still do. Also my strategic plan is massively helped with laughter, my husband & daughter constantly make me laugh, I usually end up crying the tears of laughter!! Therefore, with my positive mindset & laughter I truly believe I have the best medicine. MND WILL get me in the end, as it always does, but until then..........) I'll smile & laugh every day!!

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  • SarahWP
    replied
    Oh dear, not our best performance! But we don’t mind losing to Ireland too much. :-)

    Na. I’m a Wales supporter through and through - & not just because Sue would probably divorce me if I wasn’t! :-)

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  • Ellie
    replied
    Well, who'd have thunk !!! Different teams to what we saw last week.

    You can cheer for England now - hey, not fair, you get 2 chances

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  • Ellie
    replied
    Oh I don't think you've much to fear in the rugby today Sarah - I suspect Ireland will be trounced today !!!

    Glad last night was better, the pump is very handy indeed.

    Love Ellie.

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  • SarahWP
    replied
    Hi Ellie

    I was just thinking of you, funnily enough- wondering if you’re watching the rugby?!

    Yes all went smoothly last night & I slept really well too so definitely think this is the way forward. Big weight off!

    Thanks for asking. And I would wish Ireland luck today, but... ;-)

    Sarah xx

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  • Ellie
    replied
    Hi Sarah,

    Hope the pump behaved last night and you slept well, or slept OKish at least?

    Love Ellie.

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  • Sheila
    replied
    Thank you Doug for your wise words.
    Sarah! I am not on Instagram myself but I had a look at your pictures. Wow! You have a lovely home, wife and pets. Thanks for sharing.
    Love Sheila x x

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