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    Bulbar symptoms?

    Hello, Husband confirmed ALS diagnosis on 15.12.21 and Neurologist didn’t think there was any bulbar involvement, however over the last couple of days his mouth when talking looks a little odd, he has mentioned he is having difficulty sometimes forming words and he has also said when trying to swallow food it makes him cough. He also now sounds quite nasally at times, surely it wouldn’t be possible to deteriorate so quickly? Sorry for being a worrywart! Thank you xx
    Carer for my husband who was diagnosed with ALS on 15.12.21.
    Trying to think of only today and tomorrow
    Alison ♥

    #2
    Doggymama Assuming your husband hasn't had a stroke, unfortunately yes, they do sound like bulbar symptoms but he should see the Speech and Language Therapist (SLT) to be assessed fully - that's the only way to know for sure. 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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      #3
      Thanks Ellie, he is due to see the specialist on 10th Jan so hopefully things will kick in then. He said he felt like he was choking when eating tonight but then said rather than choking it’s as if swallowing makes him cough. Didn’t think it was possible to have deterioration in only a couple of weeks xx
      Carer for my husband who was diagnosed with ALS on 15.12.21.
      Trying to think of only today and tomorrow
      Alison ♥

      Comment


        #4
        Doggymama Hi,
        You must feel worried as your husband has so recently been diagnosed by a neurologist with ALS.Hopefully the neurologist has told you both who he /she is planning to refer your husband to for ongoing support.There would also usually be a follow up appointment made but this may not be for a few months.

        It sounds like you husband needs to see the speech and language therapist to do an assessment of swallowing and associated cough plus speech difficulties.

        Usually the neurologist refers to a number of health professionals in one team such as speech and language therapist ,physio, OT depending on how symptoms are presenting.In my case there is a palliative care team with various health professionals and as symptoms arise I get referred to the appropriate person very quickly,

        My suggestion would be for your husband to try and get back to the neurologist and run the concerns past him/her.If no joy your husbands GP might have received the report from neurologist stating who he / she is referring to and outcome of the initial assessment .Maybe GP could chase this up for you asap.

        You have barely had chance to take the diagnosis in yet.My suggestion would be to get cracking on Tuesday to contact neurologist or the medical secretary plus the GP.

        Really hope you get some support for you both asap.
        Best wishes
        Mary


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          #5
          Thank you for your reply. He has already been referred to the OT and for counselling. The neurologist who confirmed diagnosis has referred him to the MND specialist neurologist who we are seeing next week. Was getting very worried when we are seeing what looks like deterioration in only a couple of weeks, thought it would take months. To be honest I don’t think any of this has really sunk in with me yet xx
          Carer for my husband who was diagnosed with ALS on 15.12.21.
          Trying to think of only today and tomorrow
          Alison ♥

          Comment


            #6
            Doggymama It's so hard, I know - just when you're both trying to get your heads around the diagnosis, there is no let up in progression and the cold reality of ALS whacks you hard across the face...

            Progression often comes in waves - a tsunami followed by some gentle rollers, before ramping up to surfers' delights again, but there's no way of knowing what lies in store for your husband, and the unpredictability of ALS is challenging, for sure.

            Originally posted by Doggymama View Post
            He said he felt like he was choking when eating tonight but then said rather than choking it’s as if swallowing makes him cough.
            It's best if he modifies what and/or how he eats and drinks now, until he is assessed: eat slowly, chew food, smaller mouthfuls; no talking whilst chewing or swallowing; don't drink with food in the mouth; small sips of liquids, not gulps.

            Tucking his chin into his chest can make swallowing easier and, if he (or you) notices any food textures of types of drinks which make him cough more, eliminate them or modify them.

            And breathe...

            Sending you hugs 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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              #7
              Thank you Ellie. Appreciate your advice and support. Xx
              Carer for my husband who was diagnosed with ALS on 15.12.21.
              Trying to think of only today and tomorrow
              Alison ♥

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                #8
                Doggymama sorry about your husbands diagnosis and difficulty with food and drink. I see that you’ve already had good advice from Mary and Ellie. There’s nothing that I can add. Take care xx
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  Hi there. I have bulbar onset and I began slurring words well over 2 yrs ago. I began having problems re certain foods about 12 months ago. Diagnosed may 21.

                  I can still speak and can eat most things. I would say don't panic as it maybe just the start of bulbar involvement. The anxiousness grabs us all thinking is it a quick decline but Ellie hit it on the head re gradually creep in.

                  I avoid cerals, nuts, biscuits etc. Toasted bread i find easier. Bread can be hard as when chewed they form like dough balls. I also prefer squash or juice than water as its a thicker consistency.

                  I steak is out the question for me but can do stew. Moist and easy to chew is what i go for.

                  I know its hard not to panic. X
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    Thank you for the kind replies, it is much appreciated xx
                    Carer for my husband who was diagnosed with ALS on 15.12.21.
                    Trying to think of only today and tomorrow
                    Alison ♥

                    Comment


                      #11
                      Hi I'm Bulbar onset just awaiting confirmation from a consultant who deals with this (was referred from another neurologist) ​​and one anti body test. I'm still in denial but reading all the posts it makes me realise this is real. I am already slurring and I just wonder how this will all progress. I am working and eating but have to cut food up and avoid certain foods. Why why why is what I'm currently thinking. I'm 50 this year and this isn't how I imagined it would be. Kids are 19 and 23 no grandchildren and once confirmed I have to tell them. Not something I ever imagined I would ever have to do

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                        #12
                        I think it's better coming from you. Tough yes but you may be surprised.
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Indeed sorry I'm having a wobble right now. Was numb to it but now I've regained emotions again and bloody scared x it's all about me me me right now . Acceptance I suppose is part of my journey but I don't want to accept it. Scared about not being able to communicate as already slurring.
                          Last edited by Hairbsb; 18 January 2022, 17:08. Reason: Added more emotional stuff

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                            #14
                            Hairbsb I'm 51 diagnosed at 50. I never thought why me but I have seen real loss as I was a family liaison officer in the police. I saw very young lives taken. but it really is a massive shock that takes some time to even out.

                            On diagnosis all i cared about is telling my 80 year old parents. The guilt I felt knowing that what could be their last few years have been ruined by this disease.

                            They probably know its something serious and from my experience full honesty is needed. Some people want to know everything others don't.

                            But I can say that its brought me closer to loved ones.

                            Xxx
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              @Shelley21 Just out of the blue this happened as I imagine it does. I'm being bloody selfish right now. I just worry incredibly about my daughter and the effect on her when I tell her. Shes is at uni. My husband is being strong but also crumbles when we talk about our children. Sorry to say all this but it's how I feel right now and apologies if I have come across rather selfish.

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