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    #46
    Also I got some leadless headphones

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      #47
      Hello everyone, I am new to this forum and this is my first post. I am the sister of a newly diagnosed brother (57) with fronto temporal dementia and motor neurone disease. Devastated to say the least!

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        #48
        Hello Rusty

        Welcome to the group nobody wants to join. On this site you can ask whatever questions you want. You can shout scream and cry. We have all been there and will love to help you where we can. Stay safe

        Richard
        Richard

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          #49
          The wooden owl sounds lovely barry. As long he doesn't frighten the birds away!
          how are the leadless earphones? Stephen's hearing is not very good so he likes things loud? As long as he doesn't put them on and sing along to his music 😕
          when i can think of something profound i will update this.

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            #50
            Hello Rusty, sounds like he's very lucky to have you in his life as are we 😊x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #51
              Hi rusty
              nice to meet you. I'm so sorry to hear about your brother. There are lovely people on here who will help you as best they can.
              Denise xxx
              when i can think of something profound i will update this.

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                #52
                Welcome to the Forum, Rusty.

                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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                  #53
                  Hi
                  Thank you for the lovely welcome, Richard, Matthew55, Denise and Ellie. Sadly, this is difficult for me as my brother who is on his own, has 2 grown up daughters (live away) and 2 teenage boys (who live with their Mum) has leaned on his ex partners and friends during his illness. I have wanted to support my brother in any way I can but have felt very much kept at arms length. His ex partner told me he has now had a full time care package iimplemented. Of course covid has been a huge factor as we are now in tier 4 here, that I am unable to just pop in now and again. My 87 year old Mum hasnt been told of his diagnosis as she has just come out of hospital after breaking her femur end of November and has had another spell in hospital being discharged 21 December, found to have heart failure and was also in a bay with covid positive patients. Both parents now isolating until 1 January. My Dad knows of the situation but has only had one side of the story from my brother. Fortunately, I have had more details about my brother's care etc., from his ex partner who is his next of kin. I am very upset about the whole situation especially as its taken so long to get the correct diagnosis, Consultant thought it was FND initially. Brother has been deteriorating very quickly this past year, as last Christmas he said he was having some speech problems due to some nerve pain medication he was taking, little did we know what it really was. Its been a crap year, it started off losing my mother in law in February, oh and that bloody virus hasnt helped either!! Brother can no longer speak, and now using a wheelchair as legs not working, still has some movement in his arms. Fortunately, he does have an MND nurse which I am so glad about. He is so very vulnerable as no constant person by his side, one of his daughters has been very good to her Dad but lives 150 miles away, but the other one keeps away, she lives nearer to him. Its all been upsetting to say the least!

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                    #54
                    I should say brother's diagnosis is frontotemporal dementia and MND a double whammy!

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                      #55
                      It never rains does it x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #56
                        Monday we went shopping. First stop tobacconist. Parked the car outside the shop. Someone else parked in front. I sat in the car passenger seat. This hire van stops behind the car in front of us and this guy is pointing to the front of the car. I couldn't think what was wrong. He's waving his arms about. I thought it was someone behind us. Perhaps we had blocked the road behind. This guy still making a scene. I shrugged my shoulders I didn't understand what the hell was wrong. Then he got out of the van and walked towards me. I have to say I opened the door which was stupid. He was very threatening. I said I don't drive and don't speak Portuguese. He was horrible. I thought if he was nice and explained he wanted our parking space well fine I might have got in the driving seat and moved but Stephen wouldn't be long. The guy went back to his van and Stephen got in the car. This guy drove past us shouting he turned around behind us went passed still shouting. When we tried to go into the roundabout he blocked our way and made hand gestures. I admit I wasn't very lady like back but what the hell triggered such a dreadful experience I will never know. We're a couple of oldies in a car and this young man should be ashamed of himself. I wished I'd videoed it or taken his number. We were both shaken after that ordeal. 😯
                        when i can think of something profound i will update this.

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                          #57
                          That’s a terrifying situation Denise and why would the man make such a fuss? Were you in a restricted zone or does your vehicle have British plates? The reason I ask is you don’t want a repeat of this and whatever the reason for the man’s actions, he was out of order.
                          I’m going to do this even if it kills me!

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                            #58
                            We and others usually park there. He didn't have a problem with the car in front. We have a Portuguese car. It was disgraceful and very upsetting. I'm starting to think we should all have gopro cameras in our cars - front and back. I wish I'd got my phone out and recorded him or taken his photo. ☹
                            when i can think of something profound i will update this.

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                              #59
                              Very scary Denise. I really don’t know what the matter is with some people. If that persons mother had told him that had happened to her he would be raging.

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                                #60
                                Denise is there some kind of Blue Badge system there?..........
                                Husband Albert diagnosed PMA Feb 21

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