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    Hello to everybody

    Hi, I have been falling over for about 3 years, weak 3 fingers on my right hand and speach a bit slurred for 12 months or so. I had an mri and nerve/muscle tests a couple of months ago and last week was diagnosed with slow degeneration MND. The neurologist gave me Riluzone which I'm on my second day of and no sickness so far. I was scarred to death 2 weeks ago when MND was inferred but a bit better now that it's decided it's the slow type. I have enjoyed reading others posts and found them helpful, I'm a driving instructor still. Thanks all.
    Last edited by Lynne K; 18 November 2017, 19:11.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

    #2
    Welcome I'm an ex-carer of my mother who had a very fast progressing form of motor neurone disease
    One thing I will say ask for help, I didn't ask for help quickly enough ,you don't need to be stressed and receiving help takes a lot of stress off.
    If you think you don't need to do it rest! people in general get a lot of health problems because they don't rest.
    Can't tell you a lot about riluzole as my mother was prescribed it but when I saw the side-effects she decided not to take it .
    I'm autistic sorry about the grammar .
    Only learned i'm Autistic two years ago and I'm nearly 48 .

    Comment


      #3
      Thanks Streetwise. I have been taking Riluzole 2 days and no side effects so far. No problems about grammar, no need to apologise.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

      Comment


        #4
        Welcome Lynne

        You found the right place for great advice, support, and knowledge from people that understand what you are your family are experiencing.
        Wishing you all the best.

        CCxx

        Comment


          #5
          Hi Lynne and welcome.

          If like me you have a slow progression MND then you will carry on doing what comes natural to you and when you can’t you make adjustments and move on. Falls can be our worst experience so my advice is don’t be embarrassed by using a stick, crutch or walker. Prevention is better than cure if you break a bone.

          I’m not sure of the benefits you will get by taking riluzole and it seems like your neurologist has taken the standard default action when diagnosing MND. I say this after much discussion with my neurologist.

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

          Comment


            #6
            Hi Lynne,
            Welcome to the forum and I'm so glad you're being positive. It's great that you are carrying on with your job. As Barry said, don't be afraid to use a walking aid - I'm speaking from experience now and I have a pink cast on my right wrist!
            Take care,
            Bern x

            Comment


              #7
              Hi Lynne and welcome, but sorry you've had to join us.

              Good to hear you have a slow form of MND. As others have said, stay safe! A bad fall could be a real set back for you

              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


                #8
                Originally posted by Bern View Post
                I have a pink cast

                Ooh, get you Diva-girl. No plain old white for you x
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Yeah - bright pink. I'd just been told I had bone thinning prior to going into the plaster room and so I thought what the heck .......I'm having pink. Think my husband thought I'd finally flipped!! X

                  Comment


                    #10
                    Hi Lynne and welcome to the forum;

                    Sorry to hear of your recent worries and diagnoses but you seem to be on the right track and are now moving forward.

                    Hope you can keep your job running for a while yet as a driving instructor.

                    Best wishes, Terry
                    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


                      #11
                      I fell on the ice and sludge this morning, got soaked. Had help to get up. Not hurt. Just frustrated and a bit angry at the NHS for the sighting of this centre in a bad place for anybody like me to access. This was when going to my speech therapist for the first time. I seem to be more wobbly in the last few weeks. Over xmas I've been considering my options re when to give up working. I am going to start voice banking today. Do we sometimes deteriorate quicker for a few weeks then slow down? Or is this the pace that I must get used to? All comments welcomme.
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

                      Comment


                        #12
                        Hi Lynne,

                        Sorry about your fall, hope you recover quickly.

                        Progression tends not to be linear - often people with ALS/MND get periods of marked progression followed by a fairly benign period - but there's no rule book!

                        Infections, illness, trauma, stress, poor sleep and inadequate nutrition can contribute to progression too. It helps to keep on top of the game!

                        All the best,
                        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


                          #13
                          Hi Ellie. Much appreciated advice. Thanks x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Originally posted by Lynne K View Post
                            I fell on the ice and sludge this morning, got soaked. Had help to get up. Not hurt. Just frustrated and a bit angry at the NHS for the sighting of this centre in a bad place for anybody like me to access. This was when going to my speech therapist for the first time. I seem to be more wobbly in the last few weeks. Over xmas I've been considering my options re when to give up working. I am going to start voice banking today. Do we sometimes deteriorate quicker for a few weeks then slow down? Or is this the pace that I must get used to? All comments welcomme.
                            Hi Lynne - I have completed my voice banking - it can take some time so be prepared for multiple sessions. But here is a tip that might work for you - ask all your friends and family to take a session - then you will truly have a "family' voice. A chap wanted a 'yorkshire' voice and so he asked al his Yorkshire friends to contribute - worked very well apparently.

                            As for work - carry on until you can't - helps tremendously with mental health.

                            Kind regards

                            Chas

                            Comment


                              #15
                              Hi Lynne;

                              It's frustrating going to somewhere that should help you and falling due to ice, etc.

                              Good that you are moving forward by looking at voice banking.

                              As Ellie says, Mnd seems to attack in waves and you could see some improvement although it could be us just getting used to the new restrictions and leaning to cope better with them.

                              Love Terry
                              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

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