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    #16
    Sue's right it's a mess out there. Lots of people turn up then go. We had multidisciplinary 24th September. Then neurologist 13th January. A few nurses in between. I was expecting things but now realise that my husband is on a list somewhere but I'm not sure everyone has a copy. 🤔
    when i can think of something profound i will update this.

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      #17
      once diagnosed within a week I had support coming out of my ears
      now I have a chair and bed supplied.it will all happen.
      It's all funny

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        #18
        Hello Tiny, I don't know what Albert is classed as...............as I don't think there's anything other than the long winded trial and error battery of tests etc..........perhaps everybody is atypical as everyone is unusual with their own diagnosis.............it seems no one is the same, it seems PMA version of this thing is slow progressing and he seems to have "Spurts" then settles a while,

        You defo need help Tiny..........get someone to start those "Tonal" phone calls

        Matthew - good job there not falsies then!
        Husband Albert diagnosed PMA Feb 21

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          #19
          TinyLady I was exactly the same when diagnosed may last year. I heard nothing for 5 wks as errors made. Then more errors. You have to complain using the words gold standard framework re a life limited condition. You perhaps need to speak with your partner and see if any changes re work can be made I know though that this is not an easy thing to do.

          Are you in receipt of your pip yet? Could you find a pa (personal assistant) to come in for even an hour midday to do bits and prepare lunch.

          Once you have enough please complain. Xx
          Diagnosed May 2021 bulbar onset als.

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            #20
            It is such a relief to hear you all explain the differences and similarities in your diagnosis and subsequent care. I'm used to being treated badly (Functional Neaurological Disorder is a cruel label) but did think once the diagnosis changed to something so serious, I would feel cared for, after all, it's vital. I don't want to just exist.

            I do have my PIP and ESA sorted thankfully, GP did that before Christmas.

            Can't get a PA until a needs assessment. Can barely pay mortgage and bills on one salary, let alone reducing his working hours. So I will continue to muddle through. I just don't want to fall and damage my fragile hip 🤞 - wasting away is giving me a figure I've not seen for 25 years - I can live with that for now 🤣

            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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              #21
              TinyLady

              Sorry you had such a horrible time. We have been under 2 different consultants and the first appointment with both were not great.

              Warning lots of mention of death but all still here.

              On Thursday the 27th Thomas my husband celebrate 18 months with an official diagnosis of MND, fail arm type.

              We hate appointments so much.

              Anyway the first one, to get official diagnosis. They kept going on about being dead in 6 months and do you know it is terminal and what terminal means.

              I was shocked as an ex nurse. It was brutal.

              It gets better (sort of), the first area even the OT and physio said every 2 sentences said "you know it is terminal"
              Eventually I was like yes, change the record.
              What about exercises and equipment.

              The private rented house was declared not suitable. Spent months looking, moved to a totally different area.
              Mean time nothing much done as moving.
              Waited for the OT to assess new place
              Just unpacked and the OT told us that THIS one was unsuitable.

              Been in new tiny alleged wheelchair accessable housing association flat for 5 months. Still house bound as the front door is a barrier to the power wheel chair. That department is great.

              Basically husband is in the similar boat to you, his legs work but because both arms don't it affects his balance so he can only transfer.
              I have to help, transfers, eating and drinking.
              His voice is getting soft and I am scared about future communication
              Promised a lot and then not alot happens
              You get into a routine.

              Can you access computer, phone etc?
              There is a communication dept for that but some people use Alexa or google
              Husband has a button he can press with his foot to activate alarm or phone.

              Re DS1500
              did the person who filled it out send the form directly to the DWP.
              Find out who and when. Or if it is still sitting somewhere. It should have your NI number so if you phone the DWP you could check if they have recieved it.
              The MND nurse filled it out for us, it is a declaration that the medical opition is that this person may die in 12 months or 6 (it may have changed to a year)
              Don't worry about that it just fast tracks you for PIP (non means tested). And good for 3 years.

              You answer 2 questions on the phone and the money gets back dated to time of applying.

              The MND nurse in both places were good. Phone the neuro secretary and see if you can get a call or visit if your area has one.
              The GP is good too.
              Obviously the MND Association have people for advice too.

              We got a referral to hospice at home (not available everywhere and not just for end of life)
              May only last for one year, ours are busy.
              So got no one over the last 4 weeks.

              I am on carers allowance and benefit whilst caring.

              Sorry if this is over whelming




              Carer for husband, diagnosed July 2020 MND Fail Arm Type
              Donna

              Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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                #22
                Goodness DeeH - what a detailed response!

                My appointments were a bit different- made to feel almost like I was faking or not telling everything or something? But they didn't ask questions so maybe I did miss something out?

                Have DS1500 in place already. GP did it to help me out of the massive crack I fell in for the last 18 months... I'm struggling with both legs and left arm and speech. So no phone calls and no carer as still young and hubby at work/ children at school/ work.

                Under the local hospice (GP referred after a few false starts) so hoping they will look after me and be more kind. It's all been such a shock and I feel like a fraud and then get treated like one... I think my EMG was clear.... but I was also told that can happen sometimes....
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                  #23
                  Do you have old work pensions? With a DS1500 you can claim the entire pot tax free. 🍯👏✌️😁xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #24
                    Originally posted by TinyLady View Post
                    I think my EMG was clear.... but I was also told that can happen sometimes....
                    With the amount of muscle failure you have, an EMG would *not* have produced normal readings on the affected muscles if it were ALS, so I should hope the EMG showed abnormalities.

                    Absolutely appalling and cavalier attitude shown to you by that Neurologist yesterday - in no way should you be less than 100% certain that you've been diagnosed with a terminal illness, nor should you have to infer meaning from what you're being told or not told: you are not the medical expert, the Neurologist is.

                    You can always contact the admin dept of your hospital(s) and request copies of your patient notes for any, or all, appointments and tests.

                    Do you know if the Palliative Consultant is from your local hospice? xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      Oh goodness TinyLady I am so sorry you had such a distressing experience at clinic. It stressful enough for us to visit hospitals without dealing with insensitivity and being uncertain.

                      I have asked for a copy of any correspondence between consultants and my gp to be sent to me in case I have missed something or not understood. This includes test results and is within your rights. My consultant always says.. this is your story and we are privileged to take care of you.

                      I have found that they don't tell me some things unless i ask and some people might never want to know. They did ask quite early on what interventions for feeding and breathing were acceptable to me and I said, through my tears nothing but now I've totally changed my mind. I'm sure this isn't uncommon.

                      I have seen a palliative care consultant at clinic fron our hospice... just the most understanding of people. They made it clear that their job was to help me and hubby make the most of everyday. They asked us to talk through a typical day to find which parts were difficult or enjoyable.

                      Im not sure if you have an MND nurse but mine is my first contact if I have worries or questions.
                      Hugs to you,
                      Love Debbie x

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                        #26
                        matthew55 thew55 - didn't realise I can access pension - even at age 46? Council will enjoy taking that money off me 🤣

                        Ellie - I'm really not sure what's what and you are right - it was an awful way to be told, or think I was told!
                        yes, Doctor tomorrow is from local hospice and apparently he is very kind. I'm trying not to be nervous about it.

                        Deb - I'm starting to process it all and feeling less overwhelmed and tearful. You are right I should know what is being discussed. I wish someone felt privileged to look after me. I feel so scared that they don't care about me at all.
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                        Comment


                          #27
                          Originally posted by TinyLady View Post
                          yes, Doctor tomorrow is from local hospice and apparently he is very kind.
                          Oh, that's what I had hoped - the hospice ethos is very different to that of a major hospital, they're patient centred, through and through.

                          Hope you get on as well as possible tomorrow. xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #28
                            TinyLady I am so very sorry to hear how you have been treated. You should absolutely not be left in any doubt about your diagnosis - stressful enough without being made to guess.

                            I can definitely identify with some of the things you mention. Support does seem to be very disjointed and a postcode lottery - it’s a constant battle. OT and MND nurse have been helpful in connecting us to people. Local authority are appalling - the best way to get things moving with ours has been for me to wade in, and find out the name of the boss of the guy runs adult social care and speak to him directly. Could someone act on your behalf and speak with the council?

                            You should absolutely be able to access your pension. My wife is only a couple of years older than you. We used her pension to pay off the mortgage so that the council couldn’t force us to use it to fund care. If you have mortgage protection insurance, that may well kick in too.

                            Hope you have better news tomorrow.

                            Comment


                              #29
                              TinyLady Just a belated message to say I hope your meeting with the palliative doctor goes well today - you've really been through the wringer and you need somebody to come on board and help. Interested to hear how it goes.

                              Hugs x
                              Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                              Comment


                                #30
                                Thank you for the messages of support. I had a bad fall yesterday and hurt my only decent limb which scared me 😆

                                Meeting with physio this morning confirmed what I feared. My right leg is also struggling and I am no longer safe walking. The left arm and shoulder are too weak to be much help too - so I'm out of options. She also had concerns about my cough and something to do with breathing hard into a tube? She was so kind and helpful. It was such a relief.

                                I then saw the consultant - I was so nervous based on previous experience... but he was also lovely. We discussed everything and basically they want to admit me immediately to the hospice as I'm not safe at home. Then they will coordinate and chase all the adaptations and needs for me, he also said I may need referral for a PEG and to visit respiratory team while in there. I asked to come home and think about it.

                                I'm so overwhelmed I'm not sure I even know where to begin. In a couple of weeks I've gone from fighting a misdiagnosis to this. But I'm thinking it is the safest thing to go for a few weeks and speed up help.

                                Sorry for the ramble...
                                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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