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    Warmer temperatures

    This is my first post.

    I have MND, bulbar onset. Can’t speak, eat, drink and so on. Feeding tube. Serious problems with saliva and mouth secretions, and coughing and choking. Reasonably mobile. The hotter weather recently seems to be affecting me - more breathing difficulties and tiredness. Anyone else experiencing the same? Any advice?
    Bulbar onset diagnosed July 2019. PEG, nil by mouth. Synthetic voice. “Peace of MiND” blog www.deardavid.co.uk

    #2
    PAX73 A warm welcome to the forum Pax.

    I wonder if you're getting enough water? In warmer weather, it doesn't take much to become a bit dehydrated, so we all should take more water - and those of us with feeding tubes have no excuses for not doing so 😁 2000mls is a ball park target but it's depending on your weight really.

    Are you on any meds to thin mucus, reduce saliva? Have you any devices to help you - nebuliser, cough assist, suction machine, NIV breathing machine?

    Sorry for the interrogation!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Hi Pax, sorry for your diagnosis and current symptoms. There’s others here with bulbar MND so you’ll get help and/or suggestions from one or other of them. In the meantime you could search previous messages for anything helpful. Take care, Lynne x
      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.

      Comment


        #4
        Hi Pax, snap! Same issues and same problems. 😁😍😀👍xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Hi Pax - welcome. Truly sorry you had to join us x

          Comment


            #6
            Hello Pax73 and welcome to our family. I hope you can retain your mobility for a long time.
            I’m going to do this even if it kills me!

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              #7
              Hi pax

              think being too hot or too cold will make you feel worse.

              My husband, on the other hand, will not part with his cardigan or 2nd quilt even though it's 25c.

              try and stay cool. Plenty of liquids but remember vitamin d is essential which we get from sunshine. 20 minutes outside will do you good.

              love and hugs Denise xxx

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                #8
                Hi Pax,

                welcome. I’ve recently had trouble breathing and the physio at my respiratory clinic told me the change to warm weather can make things worse. We just can’t win can we?!!! Roll on winter!!!

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                  #9
                  My breathing has slightly been affected (1 diaphram(?) shrunk or something) and i just walked across to the other village (about half a mile); 2 slight slopes were much more difficult today they they were in the cooler weather. Breathing certainly more tricky.
                  Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                    #10
                    Warmer weather more pollen and perhaps more pollution at a lower level. Upsets the lungs and makes exercise more difficult. We need oxygen for our muscles to work efficiently so too much muck means less room for the good stuff.

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                      #11
                      Thank you for your welcome, everyone, and thank you for your questions and advice. To fill in the picture, I’m 73, diagnosed July 2019. Can walk a little but am increasingly unbalanced. Outside I use a stick or a powered wheelchair.

                      For the saliva / mucus problem I have hyoscine patches, Botox injections, a suction machine and a nebuliser. The medics have advised against a cough-assist machine, and so far I don’t need a NIV breathing aid. I’m 6’ 3” (188 cm) and weigh 77kg, just over12 stone, and I live in Central London.

                      Regarding the heat/exhaustion problem, perhaps the pollution is a factor. I’ve never had hay fever and I’m not showing any symptoms. Perhaps it’s just the general decreasing strength due to the MND. I’m coping and will persevere. Thanks again!
                      Bulbar onset diagnosed July 2019. PEG, nil by mouth. Synthetic voice. “Peace of MiND” blog www.deardavid.co.uk

                      Comment


                        #12
                        PAX73 Are you due more Botox soon maybe? If your saliva has become more of an issue lately, ask if you should add another half hyoscine patch, and do make surr you're drinking enough water - being properly hydrated can really help with secretions and no, drinking extra water won't increase the amount of saliva produced.

                        Thanks for the extra info, I like your spirit. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Thanks Ellie. I think more Botox is due soon. Water intake pretty high, so I reckon that’s OK. Coughing and choking are serious problems, especially at night. It helps to sleep sitting upright though.
                          Bulbar onset diagnosed July 2019. PEG, nil by mouth. Synthetic voice. “Peace of MiND” blog www.deardavid.co.uk

                          Comment


                            #14
                            Hi Pax, I am 74 with bulbar onset, and have felt more breathless and tired in this hot weather, and like you, have been wondering if the hot weather has been affecting it or just mnd progressing. I think I read somewhere about hot weather causing more ozone and pollutants in the air, and humid hot can cause breathing difficulties, x
                            Diagnosed July 2020, ALS bulbar onset.

                            Comment


                              #15
                              PAX73 Wow, that's some impressive blog you have!! And an impressive live lived so far...

                              Congrats, I haven't read it all yet, but look forward to doing so.

                              Thanks.

                              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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