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    #91
    Last January I noticed I could not lift my right arm above my head. Now it has affected both arms and hands and a little speech slurring.
    At first, the hospital said they could not see me at all this year but my GP convinced them and after three months I was diagnosed with MND.
    My legs have remained OK so far although I can only walk about a mile before fatigue gets the better of me. Sometimes my fingers work better than other times and are worse in the mornings when I am trying to get washed and dressed.
    I try to make the best of my time by taking part in a drug trial and seeing what I can buy to help.
    A physio was due to visit Monday but didn't arrive so still waiting.
    I am lucky in a way that I am 75 so at least have had a normal life until now.

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      #92
      Your sounding very positive Keno which is amazing. I hope that your hands and your walking carries on for a long time 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.

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        #93
        Just be mindful of too much excercise as our muscles weaken the process can be excelerated. x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #94
          Thanks ever so much for the replies. It's clear that the onset and symptoms totally vary from person to person and can be so similar as well! Keno am really sorry to hear the physio didn't turn up and hope that that happens as soon as for u.
          Matthew I was going to ask if exercise accelerates the disease or if exercise would be a positive thing to do. Something I will ask at my next appointment. Whilst I am able to I have carried on as much as possible doing my exercise but I don't want to make things worse. Like Ellie said I have noticed fatigue does then impact abilities to do certain tasks. My legs although stiff can actually still walk several miles but going up 2 steps at a time for example haven't got the strength which is peculiar. Hand writing I have really changed and it can be barely understandable. Ellie I did the list of changes for the new consultant and found when writing ( hardly ever write ) my hand cramps and lower forearm also. As am sure others on here must have felt the same its alarming when u discover something else.
          thanks ever so much for your responses and comments. thank you.

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            #95
            Once I accepted that I was never going to be 'normal' ever again I've been a lot happier. πŸ‘πŸ˜πŸ€—βœŒοΈxx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #96
              Originally posted by Zante View Post
              Thanks ever so much for the replies. It's clear that the onset and symptoms totally vary from person to person and can be so similar as well! Keno am really sorry to hear the physio didn't turn up and hope that that happens as soon as for u.
              Matthew I was going to ask if exercise accelerates the disease or if exercise would be a positive thing to do. Something I will ask at my next appointment. Whilst I am able to I have carried on as much as possible doing my exercise but I don't want to make things worse. Like Ellie said I have noticed fatigue does then impact abilities to do certain tasks. My legs although stiff can actually still walk several miles but going up 2 steps at a time for example haven't got the strength which is peculiar. Hand writing I have really changed and it can be barely understandable. Ellie I did the list of changes for the new consultant and found when writing ( hardly ever write ) my hand cramps and lower forearm also. As am sure others on here must have felt the same its alarming when u discover something else.
              thanks ever so much for your responses and comments. thank you.
              Hi Zante
              I think there is a lot of colds going around our GP surgery right now so it's probably a staffing problem.
              They tend to make seats about 45cm high which I have problems with but raise them up to 50cm and no problem.
              I find I have to keep trying else there is no point.

              Comment


                #97
                Matthew I admire your coping strategies and outlook on the disease and impact that it has. Everyone manages the way they can and I don't know how you do it! I burst into tears even at the thought of this becoming als. Literally sob about it and think its just my nature to be unable to cope! And then a day comes along when I put it totally out of my mind and those days are a lot better so wish I could do that more. Keno the seat situation I think this illness highlights how a small difference makes a huge difference. Perfect sense!

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                  #98
                  Try getting some happy pills. I can't cry anymore but my eyes do water! πŸ˜πŸ€—πŸ˜πŸ˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #99
                    I get very emotional these days and could do with some of those happy pills.
                    Cannabis as been recommended but I would have no idea how to get it and being a non-smoker I don't fancy the taste

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                      Am already on antidepressants for another reason and they don't exactly make u grin from ear to ear!! I am a smoker but never tried anything else like cannabis. I get emotional too. Watching anything sad on TV is a waterproof required moment ! X

                      Comment


                        Originally posted by Zante View Post
                        ... As am sure others on here must have felt the same its alarming when u discover something else..
                        In the early days when my Neurology appontments were weekly, they used to time me picking up little pegs and fitting them into holes. Week 1: fine motor skills in left hand (onset site) were already not so fine, by week 4, I could no longer pick up those pesky little pegs with my left hand - that was when the penny really dropped (actually, I almost threw up...) 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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                          I actually had my breakdown after my ENT on the phone to my first wife. So by the time a neurologist confirmed it I was as calm as a mill pond. πŸ˜πŸ€—πŸ§πŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            Ellie that must have been really frightening to discover the changes and is such a rapid space of time. I don't know if the progression like u had then kind of comes in waves or speeds or if u can have moments when it stabilises. I assume everyone is different. Weekly neurological appointments... hard to imagine now!
                            Matthew am sorry to read that after your ent . I think personally even if I guessed already about a diagnosis .... actually hearing it confirmed would still be as horrendous as not having had a clue. Take care.

                            Comment


                              At the ENT they put a camera down my throat and let me watch. I saw my voice box was half dead. The consultant said it motor neurone. x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                                Yeah, we do get to see some fascinating stuff! I thought seeing me swallowing various barium-laced foods was cool but seeing the inside of my stomach courtesy of the endoscope camera, complete with my feeding tube, was one of my life's highlights 🀩🀩 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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