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End of life, immobility.

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    End of life, immobility.

    Hi,

    I am quite claustrophobic, I don't like being in tightly packed crowds, I am okay in lifts as long as they aren't too packed.

    I was diagnosed in April, but I have had symptoms for 3 years.

    My fear is towards end of life, when I can no longer move on my own. I have bulbar problems already and muscle wasting. I can't walk unaided, I use a wheelchair when I go out.

    I can't bear being tucked in bed, or being confined physically. I hate being in the middle seat on aeroplanes, squashed in behind a table, where I can't easily get out, etc, the panic starts to rise.

    So you can probably imagine that the thought of being locked in my body as end of life draws near, is causing me a lot of worry.

    I am not scared of dying, I am hoping that the immobility comes over me slowly, so I have time to get used to it.

    Just stating this, so it's out in the open and hopefully I can learn to deal with the fear.

    Love, kindness and light to you all.

    ​​​​​​​Gwynie x

    #2
    Hi Gwynie
    Do you have any support from a hospice team?I find it useful to discuss with a nurse in the palliative care team how I feel as things arise.I am also fortunate enough to have via NHS a psychologist who does zoom meetings with me about every 5-6 weeks.This again enables me to talk about any fears I might have and come up with strategies to cope.

    On this forum are many people who are immobile and have adapted as it happened with the frustrations and losses they must have felt too..Hopefully some people will comment on here and offer their support and maybe tell you how they adapted.Not suggesting it’s easy .

    My mobility sounds roughly like yours in that I can walk a bit with a frame but wheelchair transfers by evening and wheelchair outdoors.Immobility for me has been a gradual thing.
    Started using stick and stairlift and then progressed to through floor lift and Zimmer frame.Then came manual wheelchair and just had powered chair.

    Dont know if you have a powered chair yet?Have you considered or already done voice recordings .?
    First and foremost it sounds Gwynne like you need to talk your fears through.I know from my experience that what works for me is talking therapy and the ongoing support I get from the hospice team.
    From early on after diagnosis in June 2020 it helped me to fill in my respect form and ensure the hospice team knew my wishes for my end of life care.I also felt more in control by doing that.My husband too found it helped him come to terms and feel confident as throughout the last year whenever issues have arose someone from the hospice team was quick to respond and listen to how we were feeling.They also discussed various ways to address issues whether physical or emotional as they occurred.

    Fear is crippling in itself and can really take over people’s thoughts and ruin getting the best out of today.
    I really hope you get the opportunity soon to talk through your fears.Do come back on the forum as it’s a great place for getting support in addition to other sources of support.
    Best wishes
    Mary

    Comment


      #3
      That must be awful for you Gwynie.

      I have the luxury of not being claustrophobic, so it doesn’t even cross my mind that I’m trapped, but I can understand how you would see the situation differently.

      How do you feel when you sit in a wheelchair, not regarding the people around you (which must be even worse for you as we’re in a seated position), but does actually sitting in the chair bring on fear?

      Maybe start saving for one of those fancy Genie wheelchairs which can go into a standing position 😊

      I hope it’s some time away yet and, trite as this is to say, try not to worry about the future.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Since taking Prozac I don't cry from high emotions or get frustrated. I can't tell you how much it has helped me. Mine is called Fluoxetine.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Difficult to know whether you are living alone, or with family/carers. i know that, long before i was diagnosed, i decided i couldn't agree with being buried. I know it might involvee a sort of coffin, but crmation is the way both my husnabd and i have decided to go. We may well arrange it as oon as we have moved to our final home. We aim this to be within the next 2 years.
          Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

          Comment


            #6
            Thank you Mary C, Ellie, Matthew55 and EvelynMW.

            We are trying to move into a bungalow, through our local council.
            My partner Eddie has given up his life long career to look after me, and my daughter Hannah has left a job she loves to care for me 3 times a week, to give Eddie a break. He does a lot of volunteering, so he can escape for a little while.

            I have been referred for an electric powered indoor outdoor wheelchair, but they won't start the process until we move, as we currently live in a coach house, flat over garages.

            So much seems to be on hold, until we move.

            I feel nervous in a wheelchair, I was thrown out of one, my fault for not wearing a seat belt and my partners for not seeing the gully, we do laugh about it now. But otherwise I feel fine in it. (I have a fear of falling too, that goes back to my childhood) and I have had quite a few falls.

            I already have a funeral plan, all paid for. Plus a small insurance to cover all the extra costs. I will be cremated, I am not scared of dying, I strongly believe in life after death, I have had a few experiences.

            The lasting power of attorney is in the process of being finished with Gov.Co.Uk.
            I already have a will.

            I have a few other documents in process too.

            I have always been independent and very organised. Being like this means I can start to make lovely memories instead of thinking I have a list of things to do.

            My only worry is for my loved ones and as I stated above.

            I used to be an holistic therapist, I have tried talking therapies, I didn't find them to be helpful. So I will stick with Meditation and Mindfulness, and my daughter Hannah's fantastic Indian head massage and our shared love of Reiki.

            Sending you and everyone who reads this thread, peaceful lives and a gentle end of life.

            ​​​​​​​Gwynie x

            Comment


              #7
              Gwynie Being in control of your own wheelchair, i.e. the powerchair, should make you feel better, less fearful, than being pushed along by somebody else.

              I hope you get good news on your bungalow soon.

              You sound like a lovely calm and spiritual lady, with fantastic family support - thanks for sharing.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                I hope the you have a light welcome wheelchair already Gwynie, to tide you over until you can get a powered wheelchair. I see that your questions have already been answered. Love Lynne x
                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.

                Comment


                  #9
                  Gwynie thank you for sharing your thoughts. I've found the forum members are always ready to offer sound advice. As they have.🙏
                  I was thinking about Reiki for myself and so I'm pleased to hear you recommend. I need to find a local practitioner.
                  Sounds like you've been very organised...which is great.
                  Nice to meet you....virtually💐💐💐
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    Hi Gwynie and thank you for your post, Mediation and mindfulness sounds like a good way forward and its great your daughter is an expert in head massage... send her round !🤣

                    Looking ahead is so scary... I try really hard to take one day at a time because noone in life knows what tomorrow will bring but sometimes its hard not to be worried and scared.

                    I think I am a little claustrophobic like you. When I was being diagnosed I found the most stressful tests were the MRI scans ... far worse than a lumbar punctar or EMGs because of the enclosed space. I hate lifts too ( i walked up 4 flights in labour to avoid a lift ) but I have learnt to cope with them and I close my eyes and zone out with my headphones and some good 🎶

                    I hope you get a house suitable for you and a powerchair soon because it puts you more in control..I use a powerchair full time but I still hate being pushed eg in my shower wheelchair because of the lack of independence.

                    it sounds like you have a great, supportive family and a really proactive attitude.
                    Take Care of yourself,
                    Love Debbie x

                    Comment


                      #11
                      Thanks everyone.
                      I think you are definitely right, that I will feel better when I have the powerchair.
                      You have lifted my spirit.

                      When we leave this life, we are going Home, it's the only way I can describe it.
                      Sending you all gentle hugs, lots of love and light.

                      Stay calm and be at peace.
                      Blessings to you all. X

                      Comment


                        #12
                        Gwynie I am so jelly! My very first ever manual wheelchair arrives today, and like so many others I waiting for my local council to find me suitable accommodation. Sending thoughts of Love and image.png Peace. 😁😘😍🤗xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          Hi Gwynie, really sympathise with your anxieties. Like you I think mindfulness is something I am going to try and concentrate on, with what I can actually do being constantly eroded, more appreciating being for me seems the best way forward. But fingers crossed for your move and powered wheelchair, and sending love and light to you x
                          Diagnosed July 2020, ALS bulbar onset.

                          Comment


                            #14
                            Aww, thanks everybody for your kind wishes.
                            The power wheelchair will make such a difference to all of us. Matthew55, good luck with finding suitable accommodation.

                            I have had a good day today.
                            ​​​​​​I have received notification that I have been given enhanced PIP for daily living needs and for mobility needs. And they are now paying it weekly on a Monday.
                            Also the lasting power of attorney has been done, the law says they can't register it for 4 weeks, so I will receive it by the end of July.
                            Also the housing team have now put us on the list for a 2 bedroom property.
                            I also have been referred for the peg, appointment is on the 19th July.
                            Tomorrow is orthotics, as I have foot drop in both feet.
                            Monday the respiratory physio is coming to set me up with a bi-pap.

                            Hopefully we will all have a good week and weekend.

                            Stay calm and peaceful, think mindfully about your words, thoughts and deeds. Only give out kindness and gratitude. Even when we are feeling frustrated or down. Changing your thought process will make this journey we are all on, so much easier for us, our loved ones and carers.
                            xxx

                            Comment


                              #15
                              gwynie

                              that a lot of lovely positive things i am so pleased for you.

                              yes you are right. stay calm and peaceful. those are lovely words.

                              love and hugs denise xxx

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