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    2 days since diagnosis and need clarification

    Hi
    Only seen the first consultant but he is sure and after looking at this website i am to!
    I think i know the answer to this but will this diagnosis endanger my life on a hill surrounded by fields in a listed building heated by logs and far from anyone who delivers?
    I don’t mind admitting this site makes me hyperventilate a bit! Still not really processed it all! But this forum does help hammer home what the future could/will be.


    #2
    Morning Dartmoorian

    It was a huge shock for me in the beginning. What helped me was seeing a therapist and she was also sick so could relate to me. I also phoned the MND Association and they told me it is a shock but eventually I will learn to live with it. My saving grace has I think been my MND clinic my Consultant Nurse knew everything and has helped me greatly over my year of having it. The MND Association also has meetings online at the moment for recently diagnosed also this forum is great people have great advice and they are great with any questions you may have. I can't advise you on staying in the country I live in Greater London but I am sure someone will advise you. Welcome it does get easier with time.

    Ashleigh

    Comment


      #3
      Dartmoorian A warm welcome to the forum.

      Originally posted by Dartmoorian View Post
      Only seen the first consultant but he is sure ...
      Sorry to hear that, what tests have you had and what did the Neurologist say? xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Hi
        Consultant said “ I would love to tell you it wasn’t but I’m afraid it’s MND” after my groping about for it to be anything else. Testing begins 12 February but reading the symptoms has made me realise he’s right. Living on Dartmoor i was sort of hoping all the blasted tics had given me limes disease but now realise that’s a false hope. MND fits to much like a glove! Extreme weakness and muscle wastage in my right hand, general (4 stone ) muscle wastage, funny pulse starting in left and now most my body, increasingly weak left hand, night time breathing problems and more. Like a glove even the inappropriate laughter!
        My great fear is my home is very much unsuitable and listed. Uneven stone floors, steps everywhere and heated by a byproduct of a local saw mill which i turn from 6 foot length to firewood. Everything looks wrong and I don’t want to leave where Steven Spielberg says is the most beautiful place on earth and i agree. I truly love where i live. It is eye watering beautiful! And I can’t leave but just don’t see how i can make it work.
        This is the hardest thing I’ve faced.
        I thought a divorce was bad.
        This is all so odd for someone with no social media presence! My first post on anything.
        Ludite some have said.

        Comment


          #5
          Originally posted by Dartmoorian View Post
          Extreme weakness and muscle wastage in my right hand, general (4 stone ) muscle wastage, funny pulse starting in left and now most my body, increasingly weak left hand, night time breathing problems and more. Like a glove even the inappropriate laughter
          With that muscle wastage in your hands and "general muscle wastage", can I presume you have significant dexterity issues and some degree of mobility issues?
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Welcome Dartmoorian I grew up in Devon and know Dartmoor well. You're in the best place for help, advice and support. We use humour as well so be prepared! Stay Strong. 😁🤗😘😍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              #7
              Dartmoorian you’re very welcome here. I loved my three years at Exeter Uni many years ago, and a close relative lives near you I guess in a house with steps, flagstone floors, wonky plumbing, log burners etc. I can empathise with you - a real challenge I’m sure.

              There’s so much to think about but you don’t have to think about everything all at once. Big things first - even then you’ll have time to implement after you’ve decided what you need to do.

              Do ask for opinions or advice on practical matters. You’ll get lots of ideas in return. Best wishes
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

              Comment


                #8
                Thanks for the reply’s. Feeling fairly alone in this and thanks for changing that. All your positivity has helped make the future look a bit brighter.
                Dexterity and a limp drove me finally to take it back to the doctor. I am still holding out some hope it isn’t but the consultant said i must prepare myself. Thank god i found the right department at last not back to bouncing around various! I have visited near every department associated with symptoms and have had cameras inserted up, down and in the front. At least there’s no more of that! Or is there?
                I have found symptoms surge with the changing of seasons. Be very interested if anyone else finds that. Especially autumn to winter and spring to summer.
                Any thoughts?

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                  #9
                  My muscles definitely weaken in cold weather. I hope I make it to spring. 🐑🐣😁😍xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    I very much find that to cold makes things much worse.
                    A bit of a problem on a hill in December and with a chainsaw i can no longer use.
                    I appreciate i am only at the beginning of my journey with it. Does it sound to extreme to say I’m going on a 1990’s scale hedonistic wild ride until i can’t anymore?
                    I figure why not whats the worst that can happen?! Make some memories to replace the 90’s ones lost in a fog.

                    Comment


                      #11
                      Dartmoorian

                      Sorry you have joined the club.

                      Carer for husband diagnosed in July 2020, MND fail arm type.

                      We had to move as there was stairs everywhere, even down to the bathroom and no handrail.

                      Take time to process and ask advice here. Folks here are awesome. With lots of different experiences with housing etc

                      We actually moved somewhere near the coast and a bit rural. Deliveries are essential to us now.

                      Just because I find shopping boring on my own.

                      Only place we could get an adapted place for hubs, the wheelchair came after a year BUT 6 months to get a diagnosis before that and looking back symptoms, since 2018 (vague poor grip and occasional stumbles etc). All put down to age and over training.

                      I miss the woodburner we had at a different address a decade ago, I was a mean hand with the chainsaw.

                      Unfortunately we couldn't go on a few hols due to COVID. But eating chocolate and the cheeky glass of port.

                      Husbands fortifed diet is not doing my waistline any good at all.

                      Best wishes
                      Donna


                      Donna

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

                      Comment


                        #12
                        Hiya Dartmoorian . Welcome to the club, but sorry you find yourself here.
                        You are indeed in a lovely spot. My parents lived in Woolwell, north of Plymouth - very close to the moors, and I was in Tavistock a couple of weeks ago.
                        I face similar issues, though not to quite the same extent as you. We live on a hillside overlooking the River Severn, and we are a mile and a half from the nearest pavement, street light or gas supply. We have a Rayburn wood burner hooked into our heating system, and patrolling the riverbank with a chainsaw looking for logs used to be my favourite pastime and "happy place" which I can no longer do.
                        We are looking at house adaptations so I can live on the ground floor.
                        You seem to be facing this alone which is not ideal in your situation. At least I still have wifey here to help me if/when things get difficult.
                        I have brought up the idea of moving to a more manageable house closer to facilities, but she wants to stay here.
                        It's a tough one I'm afraid. We may not have all the answers, but you have found the right people to ask about anything.
                        Hi, I'm Eddie.
                        Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                        Still walking and talking, and wondering what the future will bring.

                        Comment


                          #13
                          Hi

                          I hate to say it but really do think you are going to struggle with your location and design of your home. I've just returned from an ancient house in Portugal. Log fire, many steps and in the mountains. Very beautiful but a real challenge when needing to travel to hospital appointments. We were 30 minutes from the nearest town and winding roads up and down mountain sides.

                          The need to phone emergency services is difficult in Plymouth - they are quoting 5 hours so you need to think about that. And will they be able to find you?

                          Log fires are beautiful but I recall struggling with ready cut logs, never mind cutting them up and using a petrol trimmer to clear the land and struggling with gas bottles. The electricity also had a nasty habit of going down.
                          At some stage an OT will visit, ours is coming friday and Monday with the housing officer. Our flat is not appropriate but, I might be selfish, but I'm not moving.

                          Would it be possible to move on one floor, can you install a wet room? Would it be an option to have a live in carer? There might be some solutions. Dont panic yet because you already have a lot to take in.

                          I just know I feel better moving to where things are close to hand. I'm in the city but it's very quiet here. I miss my lovely house in Portugal but bad weather could cut us off and there was also the fear of fire. The thought of struggling with my husbands difficulties brought us back to the UK with 5 suitcases.

                          Chill for a while. Speak to professionals and think about what you want and how you will cope.

                          love and hugs
                          Denise xxx
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            Originally posted by Dartmoorian View Post
                            Hi
                            Only seen the first consultant but he is sure and after looking at this website i am to!
                            I think i know the answer to this but will this diagnosis endanger my life on a hill surrounded by fields in a listed building heated by logs and far from anyone who delivers?
                            I don’t mind admitting this site makes me hyperventilate a bit! Still not really processed it all! But this forum does help hammer home what the future could/will be.
                            Hi Dartmoorian I'm late to say hello. Hello.

                            Where you lives sounds idyllic....worse case scenario a live in carer who's handy with a chain saw🤔?

                            Moving such an upheaval especially as you love it so much. Hope you'll keep us updated👍🏻😉

                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                            Comment


                              #15
                              Hi everyone
                              Thanks for the replies. I am concentrating on how i stay not why its wrong. I can move downstairs if needs be. Not a flat floor but I’m sure I’ll make it work.
                              Luckily I’m nothing to do with the dreaded derriford or Plymouth! Torbay or Exeter but never Plymouth. I would refuse to get in any ambulance trying to take me to that shoddy incompetent place. Derriford you’ll wait 2 or 3 months Torbay more like 2 or 3 weeks. Literally!!
                              As I’m the one who goes out to direct the ambulance that’s driving up and down the road to wherever i to slightly worry about how they’d find me.
                              And as for a live in carer!! Lived alone since 2005 that’ll never work!
                              I’m only 49 the thought of needing care is possibly the scariest bit.
                              And as for telling my mum!
                              Dang and blast it!!
                              Not fair!
                              I think i hate what its doing to others more than what it’ll do to me!
                              But boy am i going to make sure there are such good memories of this year that it overrides any of what’s to come. 2022 will be legendary!
                              I hope!!

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