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    #1

    Hospital decision

    I’m staying in Wythenshaw until my PEG next Wednesday then exploring care options.

    I’m having to wear the C-pap machine with a chin strap because air was pushing my mouth open. But it’s doing it’s job for the time being. Tonight a more substantial chin strap. Problem with this is can’t speak, drink or put my dry mouth spray on unless all of the above comes off. I need CHC for night care before I get out. But waiting in a care home was suggested. I really don’t know how that’ll go.

    I probably don’t have long using my hands as I am now or standing up to transfer using the Return platform on the ward. This blasted disease.

    I had my first good cry today. Been bottling it up.

    Lynne xx

    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.
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    #2
    Sending love and hugs Lynne xx
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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      #3
      Lynne K It’s horrible when these changes kick in and you realise the reality of the disease. I understand the crying, I’ve been trying to fend it off but saw a counsellor for the first time day before yesterday and all I could do for the first half hour was cry. Sending hugs xx
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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        #4
        Rosemary6NT thanks xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.
        • Likes 1

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          #5
          Heather R thanks xx
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.
          • Likes 1

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            #6
            Oh @Lynne K.. im not surprised you're feeling tearful. Sometimes you just need to let it out and not try and bottle it up.

            I so sorry you're having such a horrible time at the moment.

            Thinking of you and sending hugs,
            Love Debbie x
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              #7
              I feel your pain sister 🙏xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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                #8
                Lynne K sorry to hear of your distress, which is understandable - we all have those times when we're overwhelmed with all this throws at us.

                'waiting in a care home' only if that's what you want Lynne...there should always be a choice IMO.

                Sending light and love 🙏💙🕯
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  #9
                  Lynne K

                  So sorry you are having such a hard time. Everything seems to be happening at once and must be overwhelming. I understand bottling it up but sometimes it does good to let the tears come. I do hope you are managing

                  Sending love x
                  Diagnosed 3rd November 2021 Bulbar Onset
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                    #10
                    Big hugs Lynne x
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                      #11
                      Hello lovely lady - thank you posting your update on what has been an emotional day for you.

                      Originally posted by Lynne K View Post
                      I’m having to wear the C-pap machine with a chin strap because air was pushing my mouth open. But it’s doing it’s job for the time being.
                      I'm so glad that using a CPAP machine has solved your low CO2 issue, which must be a big relief to you.

                      Originally posted by Lynne K View Post
                      I need CHC for night care before I get out.
                      Is somebody in the Wynthenshawe applying for CHC on your behalf Lynne? I hope so and you're not being left to fill out a handful of forms.

                      Originally posted by Lynne K View Post
                      I had my first good cry today. Been bottling it up.
                      That's totally understandable Lynne - you've had a traumatic time of late plus you're in hospital and a good cry is all part of coping, even recommended at times...

                      Sending you hugs and kisses 🤗🤗🤗😘😘😘

                      Love Ellie.

                      PS. Are you managing to eat nice food?
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                      ​
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                        #12
                        Lynne K Sorry to hear you’ve had so much going on. My ventilator and PEG both made life much better, but they didn’t happen at the same time. It’s a lot to deal with. Best wishes
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
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                          #13
                          Lynne K thinking of you. Hope all goes well for you and you feel better tomorrow. A good cry does you good.xx
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                            #14
                            Lynne K
                            So sorry you have a lot going on right now

                            I had a RIG fitted June 2021.I couldn’t cope with NIV so had in depth talks with palliative care team and decided I won’t have one.The at home palliative care team will use medications when I need them to help with symptom ,control ,With agitation ,and breathing issues.

                            Many people benefit from NIV but some people can’t tolerate it.I tried and it wasn’t for me.( my quality of sleep became worse, I coughed more,forever detaching tube to get a drink as like you I have a dry mouth.
                            7 months on I am glad I am not using the NIV.I used to dread bed time.

                            However I am pleased many people benefit from using cpap machines , NIV etc.

                            Personal choice for me based on personal experience and conversations with respiratory team and palliative Care team.
                            My hope is to remain at home if it’s possible.According to the palliative care team they agree with me that’s the aim.

                            Goodnight
                            Hope all goes well for you
                            Mary x




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                              #15
                              Big hugs lynne 🥰🥰

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