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Thread: Christmas with a PEG

  1. #11
    GrannieAnnie
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    Hi ladies. Husbands do not always see the bigger picture. Have you tried asking them how they would cope if they were the ones with MND. It might bring some realisation to the isolation. I've told everyone that I am perfectly happy to sit in at meals even if I can't eat, its the social chit chat I like. I went to a beachside restaurant with my family in the week and they tucked in chatting away, it was lovely. I sat and watched and sucked on a chip! You must get across that people don't mind if you can explain. Good luck. Ann xx

  2. #12
    Forum Member Ellie's Avatar
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    Jen I also often say I'd "happily" live with my 4 useless limbs (I'm totally dependent) if only I could talk. The eating & drinking doesn't bother me.

    Speech is the essence of being human imo.

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

  3. #13
    Forum Member Ellie's Avatar
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    Vikki, I think I'd opt for Botox over eating morsels of food too. Hope it continues to work for you and you no longer have to stuff your mouth with kitchen roll!!

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

  4. #14
    Forum Member Barry52's Avatar
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    Quote Originally Posted by Ellie View Post
    Jen I also often say I'd "happily" live with my 4 useless limbs (I'm totally dependent) if only I could talk. The eating & drinking doesn't bother me.

    Speech is the essence of being human imo.

    Love Ellie.
    I so agree with you Ellie. Speech is our personality and no one should be denied the social side of life just because they can't speak or eat. Our loved ones should empathise with us and not judge us.

    Barry x
    Iím going to do this even if it kills me!

  5. #15
    Candle
    Guest
    When a loved one is diagnosed with MND the "carer" is also thrown into a situation they too weren't prepared for. The worst of it is the carer often feels guilty for thinking about themselves when the person diagnosed is having a much, much worse time. This leads to things being said and done that cut deep. You only have to read any carer's posts on this forum to know how much everyone is affected.

    In my own family there were alot who kept away or visited once after mum was diagnosed. Those who were in the thick of it, including mum and myself, did fear the future and occasionally got frustrated or angry with various situations. This didn't mean I blamed mum or lacked empathy. I'm sure the original poster's husband didn't mean to cause any upset but said something that recognises his fears for the future. Yes Christmas will be different this year but I'm sure he would rather spend it together as a family than not.

  6. #16
    alfies mum
    Guest
    I know my husband is worried about losing me but I am so not like him.I deal with any problem face on then I move on..my husbands glass is half empty and mine is half full. I want to carry on with my life as best I can.I still drive and make sure I can pay at pump when filling up.I go to the supermarket and use the self scan. I do rely on my husband to make telephone calls on my behalf and speak to callers at the door
    My husband says he does miss me talking to him and going out for meals.That is why I want to go out with family at Christmas.
    Vikki

  7. #17
    Forum Member lorret's Avatar
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    Good morning, I just thought I'd share with you our Christmas day issues. Last Christmas day my wonderful mum passed away, but she did say enjoy life as I have had a long happy life with my lovely family. Now my dad is on so much morphine he is barely conscious.
    Tom is not able to eat the usual food ,so we are facing an uncertain Christmas. I did a sponsored silence last year, I think anyone who is close to a mnd sufferer should try this . I was so frustrated I couldn't join in the conversation, by time I'd typed anything everyone else had moved on. Lorret

  8. #18
    Bakerchick
    Guest
    I really miss conversation. BC

  9. #19
    Dvd
    Guest
    Hi ..Sorry to hear of your problem with your Christmas festivities .. Christmas can be very difficult for anyone with PBP as it is such a family time with lots of celebrations and food ..
    I always try and put myself in the person's position and think what would I want to do .. then put it to Michael ..restricting the numbers of people can help .. do more visits if possible with fewer people .. and visit ones that understand the situation .. or it could lead to lots of frustration for everyone ..
    Michael cannot not eat or drink ( peg fed) and no speech but is very lucky that it does not bother him as long as he still has his limb movement to get out unaided he is happy enough .. suppose everyone is different ..
    I find it a bit awkward eating in front of him (guilt) so i tend to wait until he is engrossed in the tv then eat ..
    Am sure there will be a lot of posts about Christmas as we approach ..
    Dvd
    Last edited by Dvd; 12th September 2016 at 09:34.

  10. #20
    missmuffett
    Guest
    Hi! I have ALS and cannot walk,talk properly and very recently had to stop eating and am now PEG fed food supplements.I am allowed only tiny tasters on my tongue else I start choking and spluttering.
    I also cry at times but in silence.My husband is great but only gets annoyed when I silently cry,my mouth open and contorted (mnd is in my jaw too) .Tears stream down my face but no sound.Is silent crying a normal symptom of someone who can't speak properly?Anyone else do silent Cries?
    I too now miss talking and eating and understand how difficult Christmas will be but agree it's the company and chatting that makes the occasion.I am always behind in conversation because my typing / voice app is slow and people tend to have started on another topic.

    missmuffett

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