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"Fish out of water"

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    "Fish out of water"

    Whilst asking about my husbands feet in a previous topic it was suggested I ask my Husbands Palliative Care Nurse or MND Nurse..........WHAT????!!!

    I have no knowledge of what this might be - where would we get such care?

    Out of sheer frustration, nobody even knew we existed as far as this unfolding nightmare was concerned, in summer 2019 I started "trawling the net" and noted I could "Self Refer" - so I did and I have to say that the adaptations and wheelchair services have been really good to him - but that's all about equipment.

    My husband was also given 3 months physio, which has long finished.

    They are also fitting us a wet room at the end of November.

    But other than that we have had nothing this because he has not yet had the definitive diagnosis ?

    There was a **** up last week with an appointment so he's now back on the list to see his consultant - he's not even had his muscle biopsy results yet and that must be over 2 months ago - after he eventually gets this appointment the consultant is saying she will send him for a second opinion to Sheffield.

    I doubt this is going to happen anytime soon - Sheffield now in Tier 3 lockdown............and these processes seem to take months.............

    If all this takes 6 months I think my husband will be bed bound by then..........god knows then what will happen............

    He never sees the GP (not that you can now anyroad) thankfully he's in no pain so no need to.

    I have become his full time nurse is this normal ?

    Where do these MND services and Palliative care services come from?

    So many questions, talk about "floundering"

    Personally I am "Sinking" my son died recently so am trying to deal with that also.

    Any info greatly appreciated



    Hello Sue,

    I am sorry to hear that your son died recently and with all that is going on with your husband you probably haven’t had time to grieve properly. I am under the care of Sheffield Hallamshire and the service is good but as your husband is not yet on the system he will struggle to get the support he needs. Of course this year has been difficult due to Covid and the normal quarterly review is carried out by telephone or video link.

    You may find that MND connect can suggest a way round the system and if you have a local hospice, they generally have a range of services that can help. Don’t think of them as a last resort because nowadays they help with physio and massage services. The MNDA has campaigned for speedier diagnosis but in the current crisis I feel sad that anyone with symptoms is being robbed of almost a year when the prognosis is only a few years.

    Best wishes and I hope you find some help soon as you should not have to go through this as a full time nurse.


    I’m going to do this even if it kills me!


      Hi Sue. When I was finally diagnosed with MND by a neurologist he explained the system of help to me and made a referral to the palliative care team and linked me in to the local hospice. At first I thought Oh dear I must be near my end. The Palliative care nurse cam out and assessed me for any symptoms I currently had and did a thorough assessment with myself and my husband. She then asked the physio from the same team to see me as needed ankle supports and exercise programme to reduce cramps and muscle spasm. The speech therapist came next and explained her role and asked me to consider voice banking and asked me to ring her anytime if I develop swallow or speech problems.The Occupational therapist has been to advise me on other aids and adaptations and I was referred by her to wheelchair services.So this was all happening in the first month or so from diagnosis.Since then the hospice rings me every few weeks to check myself and hubby are coping.
      I also was referred to MND association for a volunteer and and asked to join the on line zoom support group..I was also linked to a clinical psychologist for counselling .
      I can only say Sue that I live in South Warwickshire and linked to The Shakespeare Hospice and their support has been timely and efficient making me and hubby feel very supported.
      So sorry to hear about your son and you certainly sound at your wits end. Do you think its worth asking for a telephone appointment with your GP to outline your husbands situation and explain you feel at breaking point in the hope of the GP trying to move the appointment forward as more urgent. Maybe back with a letter to the GP and copy in the practice manager at the surgery.( I used to work at a GP surgery as a social worker and my experinece ahs been the practice managers respond to all letters of concerns or complaints) I would write a factual clear list of all your and your husbands concerns re current situation and his symptoms and insist on GP assessing the situation asap.You could also ring the surgery and say you are worried about your husbands circulation and swelling in legs and maybe ask if initially a district nurse would come out and assess his you say , your husband has more needs than just equipment.
      There are also local carers organisations as well as the suggestions Barry made to contact MND association .
      I really hope you get support too.I too was undergoing investigations when Covid struck and all my nerve conduction tests got cancelled My daughter sensed my anxiety and frustrations and paid for me to go privately for that test and privately to see a neurolologist but ensured it was still under the umbrella of the Warwick and Coventry hospital I would eventually need to remain with .I do realise not everyone can afford to go private but just explaining what I was lucky enough to be able to do to get a diagnosis.
      So Sue I really hope things can get moving with support for you and your husband as there is such a lot to cope with on top of grieving.Sending Best Wishes.MaryX


        Hi Sue. I agree with what Barry and Mary said. My wife and I felt a bit cut off from help, but as soon as my diagnosis was changed from CIDP to MND in September we were amazed at the amount of contact we had from healthcare professionals. Having said that my everyday needs are still down to my wife which is hard work for her. I would urge you to contact the local branch of the MND Association at:

        They might not be able to provide practical help at the moment but just having someone local to talk to might help.

        Best wishes and hope you get some help soon.
        Each day is made easier with a bit of humour.


          Thanks for your quick responses, its nice to know what the normal procedures are and I think nows the time to start being a pain and start ringing to get the all important consultants app - see if we can get any further this week,

          Gary I didn't know what CIPD was - that's a right old mouthful init ? are you able to say what made them change your diagnosis? I've looked at the symptoms and doubt my husband has that, the arm twitching today is severe.

          Funny (not the right word) but the twitching he was getting in his calves for about 18 months seems to have stopped and I wonder if that's because the muscle in the legs is just about non existent.............

          I start to get too deep I fear



            Yes, I think that's the only way now to get attention Sue, it shouldn't be that way but it is (unfortunately). Big Girl Pants on and start battling...

            I'm sorry to hear of the death of your son, heartfelt condolences to you.

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


              Having lost a child I feel for you. Getting help is not always a great thing. I have had three district nurses who had no idea what kind of PEG I have. I think it's about time I had it changed but I'm only the patient. 😃x


                Hi sue
                I really feel for you both. You're having a really bad time but I guess you don't need me to tell you that.
                I've just realised that it looks like we won't be getting any support. So we are going to have to look into moving back to the UK. Our house is far from suitable and the help we are going to receive here looks rather worrying. We dont think of things like this happening when we move abroad. Its all very upsetting and i dont know what to do next. Stephen seems oblivious to the whole situation. He just thinks he will be ok but its me who has to cope. Life really can be a pain in the arse. 😣


                  I'm surprised my last word was approved 🤣


                    Well I thought that we were all adults in here? 😉x


                      Originally posted by Suefromwakey View Post


                      Gary I didn't know what CIDP was - that's a right old mouthful init ? are you able to say what made them change your diagnosis? I've looked at the symptoms and doubt my husband has that, the arm twitching today is severe.

                      Funny (not the right word) but the twitching he was getting in his calves for about 18 months seems to have stopped and I wonder if that's because the muscle in the legs is just about non existent.............

                      I start to get too deep I fear

                      Suefromwakey The consultant spent an hour and a half looking at my nerve conduction results with a colleague and comparing with previous two tests over the last year. Sensory nerves hadn't changed but motor nerves had deteriorated markedly. As I said in a previous post, I always had MND at the back of my mind, so not as much of a shock as some people get. I also mentioned that I was much more emotional than previously in my life, which can be a characteristic of MND.
                      Each day is made easier with a bit of humour.


                        Oh, and my left arm hardly twitches at all now. The twitching is caused by the damage to the nerve controlling the muscle. When the muscle has nothing controlling it, it twitches. Eventually, the muscle dies. That is how the Neurologist explained it to me.
                        Each day is made easier with a bit of humour.


                          Oh Sue, I am so sorry you have an impossible amount to cope with.

                          I am so very sorry for the loss of your son. Like Matthew, I too have lost a child and in the months and years after I struggled to function never mind care for someone with MND with all the responsibilities. You should be very proud of yourself.

                          You do need to shout for help although I know it's easier said than done. I think its quite common for an MND diagnosis to be uncertain. I was referred for a second opinion but whilst waiting for this they agreed it was strongly suspected MND so we could access the services of the MND team including physio, OT , wheelchair services and an MND nurse. My husband and I were both offered counselling and the services of our local hospice. Whilst this sounded frightening it was explained that this meant massage, hydrotherapy etc whilst my hubby could have a break.

                          Sorry if I am mistaken but It sounds like you live in the same area as me. I go to the MND clinic in Leeds and have had home visits and Zoom calls during the pandemic. As far as I know the clinic is running now with COVID restrictions for newly diagnosed or if we have a new symptom. They are a great team.

                          I am thinking about you both and sending huge hugs,
                          Love Debbie x


                            Hi Debbie,

                            I feel like my heart has been broken with the loss of my son, sometimes I think because of the grief I perhaps don't consider what my husband is presently going through but it just takes over as you will know, I have no control over it, I cry all the time not sure if its for my boy, my husband or myself - perhaps all three of us,

                            We are in Wakefield but for some reason when they get round to it they are sending him to Sheffield.



                              Oh Sue, My heart breaks for you. Life can be so cruel.

                              Lots of love to you x