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Husband diagnosed and struggling

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    #16
    Hope the sun makes an appearance, and shines on you both... x
    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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      #17
      Hi MMG,

      The diagnosis of MND is an horrendous shock and im so glad your OT helped you realise its normal to have your head all over the place... you must be reeling.

      Its a good idea to get away. After I'd been diagnosed and had told people my husband and I went away to our happy place. I was bewildered and overwhelmed by visits from heath profesionals and well meaning friends bringing sympathy and flowers. Our grown up children came to visit us for a few days but as far as I remember we didn't talk much about it. When we got back I felt more like me again and less like a patient.

      Hope you have a restful time and the sun shines for you,
      ​​​​​​​Love Debbie x

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        #18
        Deb hope you’re planning to get out to your happy place soon ☀️😎

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          #19
          Thanks Phil..... We've everything crossed 🤞🌞x

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            #20
            Progress update.

            We saw the palliative care team at the local hospice on Friday, what can I say - they are wonderful.

            Really put my husbands mind at rest about the "end stages" and introduced us to what they offer.

            I am going on a first aid course to learn some techniques which may be helpful, we are both being referred to a psychologist, hubby is going fishing 🎣 and going to a mens cafe group.

            We had the advance care directive chat which has really eased his mind and assured him that he is ultimately in control on this journey with support all the way.

            Its still tough and I expect always will be but I feel more positive and I think he does too.

            A bit of bad news is that he can't have Riluzole at the moment.

            x

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              #21
              Sounds excellent but why can’t he have Riluzone yet? 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.

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                #22
                MMG Thanks for the update. Great to hear such progress being made, counselling for you both too, yippee!

                Originally posted by MMG View Post
                We had the advance care directive chat which has really eased his mind and assured him that he is ultimately in control on this journey with support all the way.
                control is so important for us - so much control is taken away from a person who is increasingly more dependent on others for ever aspect of daily life, that a big fear is not being permitted to control our medical treatments or processes.

                Hope he enjoys his fishing, lovely day for it!

                Love Ellie.
                ​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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                  #23
                  Hi MMG, glad the hospice support is proving useful to you both.It certainly reassured me and my husband Steve that support will be ongoing as we journey on making the best we can of life.Making memories is important to us and getting the best we can from each day .Sun is shining here so intend to enjoy it.
                  Best wishes
                  Mary

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                    #24
                    I can recommend Prozac for moid lifting, it takes about two weeks but it's stopped me crying. Good luck and stay strong. 👍😁🤗😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #25
                      Well its been a bit of a whirlwind, our son got married yesterday (arranged since the diagnosis) and although hubby was dreading it, due to seeing other family members it went well.

                      He is finally sleeping at night, so I think the antidepressants are finally kicking in. The days will always be better after a good sleep.

                      He can't have Riluzole as he has some elevated liver function results, got to be retested at next specialist visit which isn't until September. He finds it amusing that his liver is causing concern!!!!

                      We have also had some laughs. I haven't quite got my husband back, he still crys quite a lot. But I can see glimpses of the old him.

                      His voice is changing quite a lot. We are seeing speech and language therapist tomorrow and hope he can start voice banking. And also hope that they can provide some advice regarding the bouts of choking which is quite scary. Called an ambulance and they were unaware that oxygen shouldn't be given.


                      His right arm is deteriorating quite quickly so wondering how he/we will cope with effectively no arms.

                      We are converting the utility room into a wet room and riser/recliner chair has been ordered for him. Super Duper toilet will hopefully be coming soon too.

                      Still waiting for blue badge and PIP claim is being reviewed.

                      He is not keen on going away anywhere rural in the caravan as the ambulance took over half an hour to arrive and that worries him. I want him to want to get away while he still can.

                      Thanks guys, your positivity has helped in the darkest time of our lives.

                      xxx

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                        #26
                        MMG Huge Congrats to you both on your nuptials!!

                        Good luck with the SLT appointment tomorrow and it's a good idea to make a list of any questions either of you need answers for, and to make a note of the answers too.

                        Positive steps, glad things are slowly 'improving' xx
                        ​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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                          #27
                          Hi MMG. Re liver causing concern - yes I felt exactly same when fussing that might catch covid

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