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    Originally posted by Ellie View Post
    Positive vibes Does the MND Nurse think your dad has a strong enough cough to bring up his secretions aften the saline nebuliser loosens them - she didn't mention a 'cough assist' machine?
    Ellie 'Nursie' didn't mention that... hmmmm another to add to the list.... thank you
    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

    Comment


      Originally posted by denise View Post
      Positive vibes

      my day seems stress free compared to yours.

      I just can't get the plug out of the bathroom sink.

      Denise xxx
      Hello Denise

      Hmm, you never saw me in my previous life....! Ah yes, but you are also juggling a sensitive soul, are you not, with, erm, sensitivities.... xxx
      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

      Comment


        Originally posted by Lynne K View Post
        You said that your dad won’t drink pineapple because it’s too sweet. I didn’t like pineapple at all but as it does the trick I persevered with it. I have a glass of pure pineapple juice and a bowl of porridge with some fruit on (and maple syrup) every morning. I got used to the pineapple pretty quickly. In fact I now enjoy it. If I can get used to it surely your dad would try as it’s better than struggling with mucus overnight and such an easy solution. Good luck, Lynne x
        Hi Lynne K

        Well, he kind of persevered through 2 one litre cartons of the stuff, and I really thought he would be fine as he has a sweet tooth. He has porridge with lacto free milk and tons of sugar for breakfast, with sugary milky tea and orange juice. However, he is now adamant he won't drink any more and wants me to take the remainder away with me. Threw his toys out the pram a bit today as we'd bought orange juice from concentrate, when he will only drink juice that isn't concentrate...

        Gah! He is sulking a bit but I know he is also feeling irritable and unwell. I gently asked him to try the concentrate for now, as it seems a shame to tip that down the sink.... I feel another trip to the shop coming on....

        I will probably end up biting the bullet and getting his 'proper' juice. I will suggest he tries the pineapple for a bit longer as he still has some. However, I don't want to end up being sulked at... he's already told me I have brought the 'wrong' strawberries. Just how different is one punnet of fresh strawberries from another? Where is head bang emoji?

        I am going to lie down in a darkened room again, complete with wet flannel, snoring dog, and something cold in a tall glass, fizzing away in it....
        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

        Comment


          Hi PV,

          If your dad won’t take pineapple juice then maybe you can persuade him to take these tablets. They contain the same enzyme that works to reduce mucus.
          https://health4all.co.uk/product/bro...hoC0hUQAvD_BwE
          I’m going to do this even if it kills me!

          Comment


            Barry52 Many thanks, this could be the solution for him. (Scribbles in notepad....)
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

            Comment


              Originally posted by Positive vibes View Post

              Hi Lynne K

              Well, he kind of persevered through 2 one litre cartons of the stuff, and I really thought he would be fine as he has a sweet tooth. He has porridge with lacto free milk and tons of sugar for breakfast, with sugary milky tea and orange juice. However, he is now adamant he won't drink any more and wants me to take the remainder away with me. Threw his toys out the pram a bit today as we'd bought orange juice from concentrate, when he will only drink juice that isn't concentrate...

              Gah! He is sulking a bit but I know he is also feeling irritable and unwell. I gently asked him to try the concentrate for now, as it seems a shame to tip that down the sink.... I feel another trip to the shop coming on....

              I will probably end up biting the bullet and getting his 'proper' juice. I will suggest he tries the pineapple for a bit longer as he still has some. However, I don't want to end up being sulked at... he's already told me I have brought the 'wrong' strawberries. Just how different is one punnet of fresh strawberries from another? Where is head bang emoji?

              I am going to lie down in a darkened room again, complete with wet flannel, snoring dog, and something cold in a tall glass, fizzing away in it....
              If your dad is so fussy with food which we all do a bit of try getting him to do the list for home delivery from whichever shop he normally prefers. Then if the wrong thing arrives he hasn’t got you to blame, 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


                hiya positive vibes.

                I am newly diagnosed and am also dealing with the mountain of appointments, meeting new therapists, mnd nurses etc. Added on with adapting our house for my safety and comfort etc.

                what i have done which is helping me is a big notepad. i put everything in it, notes etc anything to do with annything. Then after few days i prepare a list and then i put it into a priority order that is needed for me. I know you want your father to make his own choices etc but you can certainly manage how and what order you need to do things. obviously its just my input etc. Then I allow myself time to cry, its needed as otherwise we hold onto that sadness for too long.

                you sound very organised and tbh being an organised person really is helping me. I try not to attach emotional sides to the tasks in had but of course the emotions do creep in, we cannot control that.

                try to plan things enjoyable for you. whether its a day out, massage, treatment anything that just means you relax a little.

                huge hugs as i know how hard it is for my partner.
                Diagnosed May 2021 bulbar onset als.

                Comment


                  Originally posted by Lynne K View Post

                  If your dad is so fussy with food which we all do a bit of try getting him to do the list for home delivery from whichever shop he normally prefers. Then if the wrong thing arrives he hasn’t got you to blame, Lynne x
                  Hello Lynne K

                  Sorry it's taken a while to reply, chasing my own tail here with hospital appts etc.

                  Now, I like your thinking on this! This is going to the top of the pile of suggestions.... x
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment


                    Originally posted by shelly21 View Post
                    hiya positive vibes.

                    I am newly diagnosed and am also dealing with the mountain of appointments, meeting new therapists, mnd nurses etc. Added on with adapting our house for my safety and comfort etc.

                    what i have done which is helping me is a big notepad. i put everything in it, notes etc anything to do with annything. Then after few days i prepare a list and then i put it into a priority order that is needed for me. I know you want your father to make his own choices etc but you can certainly manage how and what order you need to do things. obviously its just my input etc. Then I allow myself time to cry, its needed as otherwise we hold onto that sadness for too long.

                    you sound very organised and tbh being an organised person really is helping me. I try not to attach emotional sides to the tasks in had but of course the emotions do creep in, we cannot control that.

                    try to plan things enjoyable for you. whether its a day out, massage, treatment anything that just means you relax a little.

                    huge hugs as i know how hard it is for my partner.
                    Hello Shelly21

                    Nice to 'see' you on here...

                    Definitely know what you mean about appointments, etc. although Dad is reluctant to do adaptations, but, fortunately they live in a bungalow already.

                    I am definitely with you on the notepads (one each for Mum, Dad and their home after their fire, plus ring binder for each - endless letters).

                    We have all cried, separately, so as to be strong for Dad. I definitely approach things as straightforward errands for them both, and try not to think too far in the future...

                    I am still trying to persuade my parents to have a nice day out. Dad has gone into his shell a bit, and, doesn't seem keen. I am not very good about setting aside nice things to relax me, although I did manage a hair cut between running around.
                    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                    Comment


                      One step forward. Two steps back.

                      So. Dad still enjoying his hot water dispenser, but, for some reason won't use the thermal mugs. I guess they aren't as nice to drink out of, but, his china mug is a lot heavier and he is back to saying it burns his hand (has to use both hands to support a cup).

                      On the plus side, got his saline nebuliser, and he is using it twice daily (morning and evening) - fortunately he has found it really helps clear mucus, and he hasn't woken up because of the feeling that there is too much stuck in his throat. No contact from MND nurses about something to aid him get rid of the mucus altogether, but, so far he's ok on that and managing to clear by a lot of coughing (not ideal), for now.

                      After running around like an 'indigo hued buttocked insect' because the local GP was only accepting emergency calls, no on-line service, and trying to order the saline ampoules he needed for it, plus checking if the chemists had received the prescription (they hadn't) he came back from LOROS with 5 ampoules they gave him for it. Doh! So have to try again on Tuesday...

                      Got the Milton's needed to sterilise it weekly, but, having to keep reminding both parents it needs very hot water with washing up liquid to clean the mask and parts each time its used.

                      Had our Monty Python moment when Dad sat there, with Mum, who he guided to put the right amount of ampoule in the 'baffle', sitting there having switched it on, only for me to spot he hadn't connected the tube from the nebuliser to the mask, so was sitting there wondering why it wasn't 'steaming'....

                      We will all get there though... if we can't laugh at ourselves, its a poor lookout.

                      The only downer is that he's lost more weight, now 9stone 11lb, and still no dietician despite urgent referral. Yet I see him piling food on his plate and working his way through a decent meal. Need to look for more calorific non-dairy that he will eat Tried lacto-free - yogurt, nope, cheese, nope, cheese grated on his meal, nope, cream on strawberries, nope. Chocolate. Yes. But there is only so much he will eat. He says he will try the dried complan with his lacto free milk but not hopeful as it contains non-lacto free skimmed milk (yes I actually read the blasted packet this time).

                      He doesn't 'do' foreign food, e.g. mac n cheese, pizza, pasta, takeaways. Doesn't eat bread. Just a meat and 2 veg kind of man. His most daring take out food is fish n chips. He has even more daringly tried a Big M from a certain fast food place... maybe I should just go there and order a load of that...

                      Rambling now...

                      And Mum is back to denying that there is anything wrong, and getting annoyed/irritated about it. And that 'anyone can forget their address'.... gah... I was going to suggest one of those clocks which shows day, date and time, as she doesn't recall what day it is now. I think I may leave this for a bit longer....

                      Fell asleep last night from 8pm until 4am when the dog kindly woke me up. Let her out for a widdle, bleary-eyed as ever, and the door wasn't locked. Oops...


                      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                      Comment


                        Originally posted by Positive vibes View Post
                        Got the Milton's needed to sterilise it weekly, but, having to keep reminding both parents it needs very hot water with washing up liquid to clean the mask and parts each time its used.
                        Are you sure the user manual says to use "very hot water" to clean the neb parts? The usual advice is to use warm water - certainly, my nebuliser and NIV manuals advise the use of warm water - very hot water will shorten the life of silicone and rubber.

                        I use cold water for my Milton soak and anything which holds water is cleaned weekly in a (cool boiled) water and vinegar solution for 30mins.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          Originally posted by Ellie View Post
                          Are you sure the user manual says to use "very hot water" to clean the neb parts? The usual advice is to use warm water - certainly, my nebuliser and NIV manuals advise the use of warm water - very hot water will shorten the life of silicone and rubber.

                          I use cold water for my Milton soak and anything which holds water is cleaned weekly in a (cool boiled) water and vinegar solution for 30mins.
                          Hello Ellie

                          Thank you for querying this, we were puzzled too.

                          The instructions do say it - I thought it was unusual, so read it twice, Dad read it too, as I was doubting myself, as we both agreed these sorts of things suggest warm water normally. He used to work as an industrial chemist for a rubber factory, so, knows his way around those sorts of products. Mum was going to use boiling water straight on them, but, stopped her doing that! The nebuliser parts are clear plastic, not silicone or rubber though, so maybe for this one that is why?

                          There's the actual face mask part - covers nose and mouth, all clear, firm plastic with green elasticated band for round the ears.
                          The connecting hard green plastic 'valve' type thing that connects the 'baffle' to the bottom of the mask.
                          The baffle itself - clear plastic, with the inner part and outer ring and the saline fluid goes into the outer ring only, not the inner part.
                          The clear connecting softer plastic tube, which connects to the bottom valve of the baffle, and the other end into the nebuliser, the instructions say on no account to get any fluid in it, or, wash or immerse it in anything.

                          They did supply 2 bags of those parts I've just mentioned as well. And then further down the instructions, it says to use Milton's on those mask parts only once a week, to sterilise (not the connecting tube between mask and nebuliser).

                          Thank you for the tip to immerse the parts in cold water with the Milton's - I am thinking boiled water which is then cooled, before adding the Milton's. Feels a bit strange not sterilising the tube as well - this must be silicone? Not sure....

                          I like the tip of using boiled, cooled water with vinegar for anything else he may have to use in the future - I am thinking clear white vinegar, not the brown malt pickling sort....

                          I would welcome anyone else's experience with these nebuliser's too - we had to both read the instructions several times to believe it. These were picked up directly from the local hospital's respiratory department and I was told that there were all the instructions we needed with the equipment. Maybe I should double check with them in case it's a typo they haven't spotted.... will let you know if we hear any different.
                          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                          Comment


                            Originally posted by Positive vibes View Post

                            Hello Lynne K

                            Sorry it's taken a while to reply, chasing my own tail here with hospital appts etc.

                            Now, I like your thinking on this! This is going to the top of the pile of suggestions.... x
                            No problem with late replies, I do similar sometimes. That’s good about top of your list. 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


                              Mini-update:

                              Dad has accepted some diet change, he has agreed to eat mash, with added lacto-free milk, cheese &/or plant based 'butter'. And now admits he is struggling to eat so mash would be easier to swallow. Small steps. I pushed him to go for root veg mash too, e.g. carrot and swede with 'butter' - pepper on that is a step too far though.... I think this is something not too different from his usual diet of boiled potatoes with boiled veggies, so, won't feel too 'out there' for him.

                              So relieved as the weight is dropping off him. I tried to push for cream in his porridge/on strawbs, but, may be over-stepping it a bit there..... !

                              It's got to make a difference.

                              Their meat and boiled veg meals are a throw-back to eating healthy to watch their weight; so any change needs to be gradual for them both, at their ages. Whether they stick to it or not, is another thing, but at least they say they will try.

                              And Dad feels the complan, even with lacto-free milk, has caused constipation - so I was able to let him know the recent comments about that on here too, thanks folks! And no, I didn't nag him, honest!
                              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                              Comment


                                Welcome Shelley to our band of nutters! Friends for life r us! 😍🤗😍😁xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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