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    Day to day

    One day I can't stop dribbling, then the next day I'm as dry as a bone. One day I can barely walk as my legs vibrate madly, the following day not a twitch. One day my hands last all day, then I can't operate my clip from midday. There's no rhyme nor rhythm, and no way of knowing what each day will bring. I must have been a serial killer in a past life or maybe a politician. ๐Ÿ˜‰๐Ÿ‘€๐Ÿ˜‹๐Ÿ‘†xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    I agree matthew55 I seem to have good and not so good days. No clue as to how each day will be...so have to 'play it by ear' ๐Ÿค”
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      #3
      Enjoy those good/better times and movement ๐Ÿ‘๐Ÿ‘

      Once they are paralysed, they are paralysed ๐Ÿ˜˜๐Ÿ˜˜
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

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        #4
        Just wonderingโ€ฆI have days when I feel really unwell..ie apart from tiredness I have odd sensation in throat, heightened awareness of gurgling in throat. Hot sweats.Think as my breathing is changing there might be a bit of anxiety going on,

        I had a session with palliative care nurse yesterday so going to try low dose medication for anxiety which I didnโ€™t recognise in myself.
        I guess as disease progresses I wonโ€™t feel so good .Think breathing subtle changes can be alarming.I donโ€™t use the NIV by choice as couldnโ€™t get on with it.I have respiratory appointment soon but wondering if itโ€™s worth going as the advise was to use the NIV or let nature take its course with support from palliative care team.

        Oh well.todays a new day.

        Best wishes
        Mary

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          #5
          Mary C have you tried prozac yet? I had the same sensations as you and prozac took it away after two weeks. Ask your gp. โœŒ๏ธ๐Ÿ’ฏ๐Ÿ‘Œ๐Ÿ‘๐Ÿ™xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

          Comment


            #6
            Hello lovely lady,

            Originally posted by Mary C View Post
            Think as my breathing is changing there might be a bit of anxiety going on
            I think it's very normal to have a degree of anxiety if your breathing is worsening, particularly if you've some breathlessness, so it may indeed be worthwhile taking a low dose muscle relaxant/calming medicine - can you remember if it ended in "pam"?

            Originally posted by Mary C View Post
            I have respiratory appointment soon but wondering if itโ€™s worth going as the advise was to use the NIV or let nature take its course with support from palliative care team.
            I know you're kind of thinking aloud Mary and I know you have a good relationship with your palliative care team but, if you do attend the respiratory appointment, park the whole NIV issue, which you do not have to discuss, and maybe find out how your respiratory function is, so both you and the palliative care team know where you're at?

            Knowing may, or may not, give you some comfort and/or reassurance as to your overall breathing and could lessen your anxiety.

            Love Ellie, a fan of your approach to life xx



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

            โ€‹

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              #7
              Bless you Ellie for your advise.
              I was in two minds as to whether to attend the respiratory appointment.From diagnosis I have wanted to face MND as it affects me with the facts.
              Now like you mentioned I feel I should face where I am with my respiratory function if only to know the facts and share info with the palliative care team.
              Think breathing subtle changes made me a little anxious.I think medication to be prescribed might be lorazepam.

              You are right too that I donโ€™t want to discuss the NIV issue at present either.

              Today has been a good day and I enjoyed a wheelchair push in the sunshine to the local supermarket.A young man who I know works there and he bought me a lovely bunch of flowers.Another friend turned up with a poinsettia and my sister in law was here baking more little Xmas cakes for Christmas gifts.The house smelt lovely .
              Lots of blessings again.
              Goodnight
              Mary x



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                #8
                Mary C I think it's important that we control what we will and will not discuss....tolerate...etc. You do you.

                Your day sounded lovely how nice when your home smells of baking...you are blessed.
                ๐Ÿ˜˜
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                Comment


                  #9
                  Mary C Sounds like your trip to the supermarket was lovely. Iโ€™m glad about that. My hubby tries to avoid pushing me around our supermarket. He says itโ€™s a โ€˜faff' so I donโ€™t get out enough. But weโ€™re going to Brockholes again for lunch and a wander around tomorrow. Iโ€™m going to use my powered wheelchair but dread the way that Steve bumps it up the kerb (missing several times) when he gets my wheelchair out of the back of my WAVs and brings it to my passenger door where the can get in it 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.

                  Comment


                    #10
                    Lynne K
                    Hi Lynne, hope you enjoy your trip out tomorrow.Itโ€™s so lovely to get out of the house for a change of scene.Itโ€™s good to have things to look forward to.Our son has 5 children so some of them are coming after school today.
                    Although I have to remain seated I can chat with them and play board games etc.We might watch a film.They stay for a meal with our son and I love the chatter around the table.The youngest are twins aged 10 and they love to get in my manual chair for a ride around the house๐Ÿ˜‚

                    Hope you have a less bumpy ride tomorrow .
                    Best wishes
                    Mary

                    Comment


                      #11
                      Originally posted by Mary C View Post
                      Think breathing subtle changes made me a little anxious.
                      That is perfectly understandable Mary C and it's a natural response.

                      The thing about anxiety is that it affects how everybody breathes - it makes one breathe faster and shallower and uses the top part of the lungs primarily. Add in breathing issues caused by an MND and you have a perfect storm ๐Ÿ˜Ÿ

                      It becomes a self-perpetuating situation for us: inefficient breathing caused by being anxious makes us feel worse, we get more anxious because we feel as if we're not breathing properly, so we breathe more rapidly - using Lorazepam breaks this cycle by calming both you and your muscles, more or less as the Oramorph does, but may be longer lasting.

                      If you do begin to feel anxious, try putting your hand high up on your tummy and concentrate on feeling the muscles move with your breathing. The aim is to make the diaphragm muscle, which sits between the stomach and the lungs, do the bulk of the breathing work, expand your lungs and increase your blood oxygen. Be aware of your hand tracking your breathing and relax into the rhythm. An open window or gentle fan nearby can be comforting too, if really stressed about breathing, in addition to Lorazepam/Oramorph. xx
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

                      Comment


                        #12
                        For various reasons I didn't have my meds until one today. All morning I have been making noise breathing out and wanting to cough every other minute. Before happy pills my breathing became so alarming my friend called an ambulance twice. It's quite amazing what our medications have influence over. I'm not getting demented by the way. ๐Ÿ˜œ๐Ÿ˜‰๐Ÿ˜๐Ÿ˜
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                          #13
                          When I feel anxious about breathing having a fan on & open window helps (as Ellie mentioned) it's just comforting and helps me relax which in turn helps my breathing. Mind games.
                          Hope you feel better soon matthew55 ๐Ÿค—
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                          Comment


                            #14
                            Mary C i too love your approach to life and the way you find lovely things in every day. I am sure you enjoyed time with your grandchildren. My baby grandson loves a ride in my powerchair.. he probably thinks everyone has one.

                            I think we all have anxious times. I guess its to be expected.. mine are usually when I'm awake in the night.

                            Love and hugs to you. Keep smiling,
                            Debbie x

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