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Advice on motor neurone disease please

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    #61
    Hi Sheila,

    Thank you for your kind words. I was diagnosed last year, and it took quite a while before I was brave enough to join in on this forum in November.

    MND mainly affects my legs at the moment. I have some weakness in my hands, but it hasn't caused me any significant problems yet.

    My neurologist told me about ventilation - he said that it would probably be offered to me at some point in the future, to make my breathing more comfortable. It could also be offered to me if I was getting morning headaches. Although I don't need it at the moment, I was interested to read the useful tips on the forum about masks, in case they come in handy in future. I have also told my husband about the recommendation that MND patients shouldn't be given oxygen - just in case I ever need to go into hospital and the medical staff arn't aware of this recommendation.

    I'm trying to take one day at a time and not worry too much about how quickly or slowly my health is going to decline - but every now and then I read an information sheet on the MNDA website.

    Since joining the forum, I have found that the support and advice given to me by the wonderful folk here has been extremely helpful and encouraging. I find that the experiences they kindly share give a very valuable insight into the realities of life for those affected by MND, that we wouldn't always get from just reading factsheets.

    I hope you have started to get the support you need from your OT etc. Alhough my life is not exactly the same as it was before, there are adaptations that can be made (such as dashing around in my electric wheelchair rather than on foot) that enable me to make the most of every day. I also still enjoy lots of quality time with family and friends.

    It was good to read (on a different thread) that you have got a scooter. I hope you enjoy getting out and about using it, especially with the Spring and Summer coming up. At first It seemed strange for me to start using a wheelchair - but now I just think of it as my very comfy chair on wheels, which has given me back a lot of freedom and independence.

    I hope you and your family are ok.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 27 February 2019, 23:41.

    Comment


      #62
      Hi Kayleigh it sounds like you are being stoical about your condition. I admire you for that although I'm sure it's not easy. I'm trying to be more positive, less despairing. The m62 doesn't help...
      I think he's on permanent oxygen because he can't breathe without it? I'll ask them later. I dread to think what state his face will be in today

      Comment


        #63
        Ellie makes an important statement about the risk of oxygen. The MNDA provides a free wristband that declares this and it can be useful if you have no speech or are involved in an injury and need emergency services.

        Barry
        I’m going to do this even if it kills me!

        Comment


          #64
          Thanks for letting us know about the wristbands Barry. Hopefully once medical staff are aware that we have MND, they will be knowledgeable enough to know what care is appropriate for us.

          My understanding, from reading the MNDA'S guidelines, is that although oxygen is 'not recommended' for MND patients, it's not actually the case that oxygen should never be used - indeed, the MNDA guidelines say that if oxygen levels are low, it might be given to us but 'with caution' - perhaps this is why K's Dad is being given it.

          https://www.mndassociation.org/about...d-ventilation/

          Hopefully all medical staff in hospitals are aware of the MNDA's guidelines about what is and isn't recommended for MND patients concerning their care - if they don't, I don't think it should be left to patients and their families to educate them.

          Best wishes,
          Kayleigh x

          Comment


            #65
            Hi KLH,

            I hope both you and your dad had a comfortable night.

            Originally posted by KLH View Post

            One practical issue - he's on a ventilator
            Do you know what type of ventilator he is using?

            Originally posted by KLH View Post
            I think he's on permanent oxygen because he can't breathe without it? I'll ask them later.
            The issue with oxygen is that with weakened breathing muscles, we cannot get rid of enough carbon dioxide, so it builds up in the body.

            Breathing room air, supported by a BiPAP ventilator, is best for us.

            If your dad's face hasn't been attended to by nursing, raise hell about it, it's simply not good enough. I know you are stressed and can do without having to fight, but maybe get Patient Liasion Services involved?

            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


              #66
              Kayleigh, you'd hope that Doctors & Nurses would know about using O2, wouldn't you?? But unfortunately this is not the case and people with poor respiratory function on this Forum have been given O2 with disastrous consequences. It makes me sad and angry...

              The "use with caution" caveat wouldn't apply in the majority of times it is actually used on us in hospitals, which is why the wristband and educating our family and carers, as you did, is so important.

              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


                #67
                Wow .. Thanks everyone for your advice about O2. I had no idea about this at all. I am telling my family and going to get a wristband. This forum is invaluable.

                KLH .. I am thinking about you and your Dad and hoping he is comfortable today. Take care of yourself too.

                Love Debbie x

                Comment


                  #68
                  I agree with you Ellie. If medical staff know that oxygen can be given 'with caution' then this is different than them being told that MND patients should never be given oxygen.

                  As it stands, from the info in the MNDA guidelines, it appears that medical staff can use their judgement about whether we are given oxygen or not. I would never have known about the risks if I hadn't read about it here. We have got enough to deal with without worrying about being given oxygen or not.

                  The 'with caution' caveat does not particularly warn against oxygen use entirely - It implies that in certain circumstances, medical staff might deem it necessary to use oxygen to increase our oxygen levels. This could put us in a difficult situation if we have to question the judgement of a doctor who has decided, even after taking into account all the risks, that oxygen should be used.

                  Its good that we discuss this issue on the forum because I would have presumed that all doctors etc, including those in hospitals, would be aware of the risks of giving oxygen to MND patients, but unfortunately they might not be.

                  Love Kayleigh x

                  Comment


                    #69
                    Use of a low flow of O2 in ALS/MND is most often associated with end of life comfort, and even this is not often done.

                    It's not routinely used to raise one's Sats, as it can be counterproductive. If O2 is used with caution, it is for a short period of time, in conjunction with a BiPAP machine and, importantly, with regular testing of CO2 levels.

                    Even using O2 with caution should be evaluated on a risk v benefit basis.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #70
                      Many thanks for the detailed explanation Ellie. Hopefully, all doctors etc are as knowledgeable as you are, especially those who treat MND patients in hospitals!

                      Comment


                        #71
                        Hi KLH,

                        I hope that hospital staff have been helpful today with resolving the issues with the uncomfortable mask. What the heck is going on when the NHS appear to be using masks that are not completely 'fit for purpose'? - although the masks are being used as part of the equipment to make a patient's breathing more comfortable, it seems very unsatisfactory that their comfort and health is often compromised, due to the design of the masks making them so uncomfortable to wear.

                        You must be exhausted with everything you have to cope with. I try to stay positive about things but it's not always easy. Sometimes the stress we are under can seem relentless. Although I get a lot of emotional support from this forum, I also find it helps to talk about things with a close member of my family or a close friend. Hopefully you have someone who you can talk things through with.

                        I hope things will get a bit easier for you, and you will be able to get more time to rest. Hopefully, a bed will soon become available for your Dad at the hospice.

                        Thinking of you
                        Kayleigh x
                        Last edited by Kayleigh; 28 February 2019, 16:00.

                        Comment


                          #72
                          Originally posted by Ellie View Post
                          Use of a low flow of O2 in ALS/MND is most often associated with end of life comfort, and even this is not often done.

                          It's not routinely used to raise one's Sats, as it can be counterproductive. If O2 is used with caution, it is for a short period of time, in conjunction with a BiPAP machine and, importantly, with regular testing of CO2 levels.

                          Even using O2 with caution should be evaluated on a risk v benefit basis.
                          The Chimp probably knows a lot more about it than me, but it is my understanding that breathing is mainly triggered by CO2 levels but our system does not work ( O2 levels also triggers breathing but to a much lesser extent ), so if oxygen is given to us we don't want to breath and our CO2 levels increase even higher.

                          It is descracefull that you have to push for the right care and treatment for him.

                          Also it's descracefull that the ward and breathing department have not tried different masks and things out to make him a bit more comfortable..

                          It should not fall down to you to have to beg, push etc.

                          I feel for you both.

                          Hugs Terry
                          Last edited by Terry; 1 March 2019, 16:11.
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #73
                            I agree with you Terry. It makes me worried about ever having to go into hospital. With the vast sums of taxpayers money that is pumped into the NHS annually, you'd think they would at least be able to supply the basics for patients, like comfortable masks. Patients shouldn't have to supply these themselves, and they shouldn't have to supply things to make the uncomfortable masks completely 'fit for purpose'.

                            And the issue with the oxygen concerns me. It doesn't bode well for us if a doctor's default is to go ahead with giving oxygen to a patient who they already know has MND - it's unacceptable and unfair if a patient, or their carer, is burdened with the responsibility of educating doctors etc about the risks - all medics caring for MND patients should already know that oxygen is not recommended for MND patients! If there really is a widespread gap in knowledge about this issue in hospitals etc, then perhaps more awareness needs to be raised, possibly by the MNDA?

                            The wristbands are a great idea, but do all doctors etc really know how risky it is for MND patients to be given oxygen? - if the aren't fully aware of the risks, I don't think it should be the responsibility of MND patients, or their carers, to educate them - we have got more than enough to deal with already!
                            Last edited by Kayleigh; 28 February 2019, 18:37.

                            Comment


                              #74
                              Hello again and thanks for all the comments.
                              There's so much to learn isn't there? Mind boggling
                              I spoke with the consultant today and she said the oxygen is essential because he has respiratory failure, caused by mnd, and needs oxygen to survive
                              When I got there my dad was back to the nasal oxygen tubes. He had kept pulling the masks off. The consultant talked to him (and later us) and said he's reducing his life span by not having niv (?). His face was lots better but a few sores still.
                              I don't know what to think. The staff are great but the turnover is high, ie different people each day, although some the same
                              My friends continue to be supportive, I got a food parcel last night which is so very welcome. I suppose I feel very alone and heartbroken at times, because that's how it is.
                              I'm trying hard to see things more positively, to appreciate the fact I've had a loving dad and that despite alsorts, and I mean alsorts, we have a good relationship
                              On another note my anger continues to simmer and I hate people patronising him and talking above him. I remember this happening when my mum was dying. It makes me so pissed off. Have some sympathy and talk to him normally. He's still the man he always was

                              Comment


                                #75
                                Hi KLH,

                                Glad your friends are keeping you fed, the fuel is vital.

                                Your Dad's consultant is not familiar with what happens in MND, it appears.

                                Unfortunately respiratory failure is part of ALS/MND - just as limb muscles weaken, so do our breathing muscles leading to respiratory failure.

                                Using a BiPAP machine, NIV, can help prolong life but its most important function is to improve our quality of life.

                                By using O2 your dad's life is potentially being reduced by some time and can lead to agitation and other side effects from a build up of CO2 in his body.

                                The state of "respiratory failure" does not imply death is iminent, just as people live with heart failure for years, so too can we. I have respiratory failure for a number of years.

                                I presume there is no Neurologist in that hospital with a knowledge of MND, so can your dad's MND Consultant liase with the hospital he's currently in?

                                The ideal solution would be for your dad to be assessed by a Respiratory Specialist who knows exactly how breathing is affected in ALS/MND and start using BiPAP at the correct settings.

                                My heart goes out to you both.

                                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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