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    #16
    Hi Sue , some areas are better than others, I’m on slow progression so I’m largely ignored , I have regular physio , but been trying to get an OH referral for about 2 months ,( GP, MNDA, consultant,) I’m only asking for some IT advice as I have problems using a computer, in fact I still haven’t had a baseline assessment, diagnosed 11 months ago,
    sorry thought I would have a moan as I often read about others and the help they receive and teams of people and contacts, but for some it’s a bit of a struggle, didn’t even get any help in getting a blue badge, had to do that on my own (have walking problems) asked for help and was told it’s up to the local council,
    we don’t even have a specialist nurse in our health area, but I didn’t know we could self refer, think I will give that go.
    i think you have to just be nuisance to get things done perhaps, you are not an isolated case Sue
    Moan over,
    Hope you get the aid and support you need soon
    s
    As long as there’s golf and beer I’m happy

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      #17
      Shaun Can the OT in the MND Clinic not refer you for an Environmental Controls assessment?

      Speech & Language Therapists can also refer but IDK if you need to have a weakening voice for the SLT to be involved.

      Good luck!

      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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        #18
        Shaun,

        Hope you get a successful self referral, you are quite right about the feeling of isolation, I joined this forum moons ago and didn't post anything, tried to keep off it, but now I am finding it is more and more useful, the people on here give their opinions and good tips and advice, I suppose for me it was a matter of trying to ignore the situation, I only told my husband last week that I come on here as being the pooh pooher he is he would normally have laughed, now I think he realises that my isolation can be somewhat alleviated by coming on here.

        We've all read about the post code lottery insofar people getting drugs on one side of the street and not the other for other complaints, it would seem its the same for MND care from what you say,

        Best wishes

        Sue



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          #19
          Hi Sue, I was wondering if you are planning to get on to your GP today or practice manager/district nurse to see if you can get support for you both moving. I do feel sad that you have so much stress at the moment but you sound like a woman who isn't going to give up easily. Like you I wasn't sure if this forum was for me but actually I think people on here and their carers, partners , wives are the people living the MND experience so really want to support each other. I struggled with whether to join the zoom support group meetings for my area in Warwickshire as wasn't sure I was ready to talk face to face with other people and their partners, etc.I have found to my suprise I now look forward to the monthly support meetings to share experiences, advise and humour.I really am praying for you and your husband to get a break through with getting some help soon.Best Wishes to you both.MaryX

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            #20
            Mary,
            Thanks for thinking of us, its difficult isn't it, If I push too hard with "Suggestions of getting help" he doesn't like it, I have to do it gradually, I have already started throwing comments into the ring! one of them being that if he hears nothing from the consultant this week then next week he should start ringing her secretary - become a pain as it where, I think 8 weeks after the muscle biopsy is long enough to wait for the results, all my husband says is that "whats the point there's no cure" it gets us no further

            I have also mentioned the local support branches for MND so will bring them into the conversation more and more...........the less I shove the more likely I am at getting him to agree,

            On the one hand I like the Zoom aspect but think I am too emotional - I cant even speak on the phone to anyone without balling my eyes out I cant even get the words out "I've lost my son" just to explain why I am like this. A bit like my husband I am loathe to speaking to a Dr - what can they do they cant bring my lad back - and I don't want tablets...........I'm trying to wing it.

            I use a site for adult child loss - 3 times a week - all in the same situation - I've been amazed at just how many ladies (Men don't seem to use the site) on there have lost an adult child and also had to cope with their husbands illnesses or being widowed - just an observation.

            I might try the local branch support - if I could explain by email I'd probably be better at it. Mebbe I could keep it between me and them for the time being?

            Another day waiting for the postman to see if his appointment turns up!

            Best Wishes

            Sue

            ​​​​​​​

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              #21
              Hi Sue ,I understand how hard it is for your husband perhaps not wanting some support services as yes there is no cure .But it’s about you Sue as well as your relationship changes to carer as well as wife.For me I like to know what help I could access as and when I need it.It was comforting to me And husband to know we have contacts we can ring if we need advise .Initially I just applied for a blue badge and that came within a week before I got a diagnosis.I sorted benefit application for PIP and then when that was received I ordered a motability car.I do hope your husband gets biopsy results soon as you are in limbo.Do you think the Gp might already have those results..?? Added to this situation is the grieving for losing your son.Its absolutely OK to cry Sue but get your drift that on zoom you might feel even more emotional.I cry sometimes when I think about leaving my husband behind and my adult kids and grandchildren when I reach the end.Its natural.You have such a lot going on.Take care and good luck in trying to move forward with your husbands consultant.aBest wishes xx

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                #22
                Cry as much as you want, Sue. It doesn't do any harm. One symptom of MND that doesn't get much mention is 'emotional lability' which is exaggerated emotions. I suffer from this and initially it took a while to get used to, but getting used to it now. As someone who didn't even cry at his dad's funeral and the other week was crying at 'Beauty and the Beast' (wife was watching this by the way) I think I've got over any embarrassment. I realise that it's your husband who has the illness, but I think as a society we are conditioned to not to show emotion. Give the Zoom meeting a try, they'll be very understanding.
                Each day is made easier with a bit of humour.

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                  #23
                  [QUOTE=Ellie;n33138]Shaun Can the OT in the MND Clinic not refer you for an Environmental Control

                  Hi Ellie, our mnd clinic is part of the ‘ department of medicine for the elderly’ (I’m only 59) Consultant is part time and there is no OT assigned, however GOOD news, my GP has got me referral with neighbouring health area environmental control, they called me today and coming to see me next week.
                  just need to get onto the local hospice list now.

                  Will admit to you, I’ve known my GP for a number of years, personal connection through her former practise partner, she did not know I had mnd until about 2 months ago, (My wife intervened telling her that support for me was nonexistent, Although I had seen other doctors in the surgery, ) so Fran will be my go to GP now ,

                  shaun

                  As long as there’s golf and beer I’m happy

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                    #24
                    It's great to have one good contact, Shaun. Maybe Fran will refer you to the hospice?

                    And when you see EC, think of you on a very bad day (no sleep, fatigued, shoulder pain, cramps and unable to even think of picking up a glass of beer 😏) when answering their questions.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      Will do Ellie
                      will even do my hand exercises as that’s sure stop them working
                      shaun
                      As long as there’s golf and beer I’m happy

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