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    #16
    People on this forum are remarkable thank you all for your positive vibes It gives. everybody that extra energy !

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      #17
      Thanks for the advice Piglet. Glad to hear your husband is still walking after five years it give me some hope. Will be starting the Riluzole from next week and maybe that will do some good.

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        #18
        A warm welcome to the forum Aidan in Shrewsbury. Im sorry for your diagnosis. Its such a shock isn't it ?

        You made me smile with your comments about Cardiff winning the premiership. At one of my early appointments I asked the neurogist if I would live long enough to see Leeds promoted. He smiled a wry smile and said Debbie I dont think any of us will live that long. I did see Leeds promoted but the way we're playing atm I think I might see them relegated.

        Take care,
        Love Debbie x

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          #19
          Originally posted by Deb View Post
          A warm welcome to the forum Aidan in Shrewsbury. Im sorry for your diagnosis. Its such a shock isn't it ?

          You made me smile with your comments about Cardiff winning the premiership. At one of my early appointments I asked the neurogist if I would live long enough to see Leeds promoted. He smiled a wry smile and said Debbie I dont think any of us will live that long. I did see Leeds promoted but the way we're playing atm I think I might see them relegated.

          Take care,
          Love Debbie x
          Hi Debbie Cardiff we’re so terrible for such a long time I never thought I would see them achieve anything much but over the last 15 years I have seen them get to an FA cup final League cup final and promoted to the premier league twice. My favourite memory of our second promotion season was going to Elland Road and winning 1-4. Enjoy watching Leeds play they play exciting football under Bielsa. Think they will stay up this season just.

          Love Aidan

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            #20
            Today should be interesting COYS!!!!
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #21
              Hello Aidan, sorry you had to come on here, I've found as the carer that you just adapt to this whole saga without particularly realising that's what you are doing, I have lost count of the "New Normals" we have had.............for me its only looking back and realising just how far down this road we have come which can be alarming at times,

              I'm not one to live for today or the hour I love a good bit of analysis and try to look at whats coming our way next before it actually does - better to be forewarned is my motto and Alberts OT agrees!

              Best wishes
              Husband Albert diagnosed PMA Feb 21

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                #22
                My husband (age 58) started in a similar way, he was being investigated for left hand carpal tunnel initially Jan 2021 which coincided with left frozen shoulder. Nerve conduction tests were carried out Feb 2021 which concluded that as four fingers were affected it wasn't only carpal tunnel going on and referred to neurologist. By the time neurologist was seen in April 2021 the right hand was also similarly affected and a limp had developed in left leg. GP suspected a brain tumour.

                This seems a fairly quick diagnosis compared to some on here - and health services have been amazing, despite the pandemic.

                Upon diagnosis of ALS (Apr 2021) GP's comment was " well at least its not a brain tumour".

                He now has an attendant operated power wheelchair, uses head operated Ipad for communication, no speech (voice banked Sept 2021 when speech started to be affected), PEG fed and now advised to use NIV overnight as breathing is now compromised. Not yet a year from diagnosis.

                With hindsight, early symptoms were a few years ago when he had symptoms with his tongue which felt "funny" and swollen on one side and he kept biting it as it didn't move as it should. ENT couldn't find anything wrong and advised that his teeth may need attention.

                We read up on everything as we took the view that forewarned is forearmed, and discovered that the only guarantee is that everyone's journey is different - there is no set progression path or timeline. We are 10 months in and it is difficult to comprehend how quick the progression has been for him.

                Fortunately we took advice from the various experts about having things done before anyone thought they would be needed - eg adaptations, PEG, voice banking. As it happens voice had started failing by August, voice banking completed September. Voice completely gone by Christmas. PEG fitted mid November, now 100% PEG reliant.

                Hope your progression is much slower - wishing you well xx
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                Respiratory and blood gases still within normal range.

                No speech but sense of humour still fully intact.

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                  #23
                  Thanks for the good wishes MMG. Hope things go as well as they can for you given the wretched nature of this illness.

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                    #24

                    Originally posted by Aidan in Shrewsbury View Post
                    I too often have a poor appetite and simply don’t want to eat a big meal. Try to make up for it by grazing between meals but don’t even want to do that much of the time.
                    Has your weight loss stabilised in recent weeks Aidan?

                    If not, a Dietitian can help advise you how to maintain your weight, which might include some nutrition drinks. I know that sometimes we almost need to force ourselves to eat but eating can make us feel heaps better, improve our mood and how much sleep we get. xx


                    ​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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                      #25
                      Yes weight loss has stabilised over the last week or so I have even put on a bit so the grazing on cakes is working. Isn’t it good that food that is fattening tastes good

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                        #26
                        Originally posted by Aidan in Shrewsbury View Post
                        I have even put on a bit so the grazing on cakes is working.
                        That's great Aidan.

                        At the risk of being a Party Pooper 🙄 try to make sure you get a decent amount of protein too - our bodies really need it. xx
                        ​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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                          #27
                          Had a productive day today. Saw my neurologist this morning to get a prescription for Riluzole. Had to go to Telford to see him which was a bit annoying but when I get it it will come from the neurology dept of my local hospital hope to start it by next week. Stopped at a place in Shrewsbury called Ableworld which sells all sorts of devices for disabled people.

                          Got myself a walking stick with prongs which is quite good but what I found really good was a rollator I could whizz along at nearly normal speed with that. Will definitely get one am seeing a OT soon who might help. Could actually whizz along to the shops with a rollator. Was reluctant about them before as it’s saying to the world I am disabled but of course I am.

                          Actually going to the pub tomorrow for a lunchtime putting the world to rights session with my cronies. Should get the Ukrainian situation solved.

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                            #28
                            Great you've had a productive day Aidan in Shrewsbury. The pub sounds more enjoyable, however, than a trip to see the neurologist although both are necessary !🍻

                            Your OT should advise and then source any equipment you need so I wouldn't buy anything ( unless of course its an emergency!) . Mine tended to look ahead which i found upsetting at the time but she was right.

                            You may notice that I'm not talking about football today 😩😩
                            Love Debbie x

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                              #29
                              Still think Leeds will stay up but it’s a bit rough for them at the moment.

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                                #30
                                Rollator the best thing ever ,gave my Jan anew lease of life and a lot more independance ! 👍

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