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    #16
    Hi Sheila, welcome to the forum. Chat soon. 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


      #17
      Hi Dawn and a warm welcome to the forum,

      I am glad you dipped your toe because this is a good place for emotional and practical support. There is occasional humour and also meltdowns and frustration. I am sure we all feel like that sometimes. Its good to chat to people who really understand.

      Take care and well done to your son.
      Love Debbie x

      Comment


        #18
        Hi Sheila and welcome to the forum,

        The early days are such a shock and everything seems so scary. Its overwhelming! I am so glad you have support from your loved ones and I hope you will get support from the professionals too.

        It probably doesn't seem like it now but you do find a new sort of "normal " and laugh again. I was diagnosed a year ago and initially I just couldn't concentrate on anything, like TV or books but now it's not the first thing I think of when I wake up.

        Take Care and keep in touch.
        Love Debbie x

        Comment


          #19
          Wow and thank you all so much for the welcome and the kind words (and Advice!) It's all very much appreciated. My GP recommended this site and I am so grateful I've joined. It's incredibly reassuring to chat to fellow sufferers.

          Ellie! I agree. I think some counselling would definitely help. I am taken antidepressants at the moment (Amitriptlyine). It would be nice to get some more sleep in time.

          Once Again! Thank you all so much for the warm welcome and I will definitely be popping up from time to time for advice and chat.

          Much love

          Sheila

          Comment


            #20
            Welcome Sheila, I am Sheila too, My Husband was diagnosed July 18. It's very difficult I know. Lots of support on here x

            Comment


              #21
              Thank you Debbie, and for your kind words. Yes, we will keep in touch. X

              Comment


                #22
                Hi Sheila,

                I remember that you have got your first appointment with your dietitian tomorrow.

                Like you, I lost a lot of weight soon after my diagnosis. My dietitian gave me some really good advice and information about what nutritional food I should eat to boost my calorie intake, taking into account any food allergies and any difficulties with swallowing. I expect that your dietitian will be just as helpful.

                Sometimes even making small changes like using butter rather than low fat spreads, and full-fat milk instead of skimmed, can be very effective. Not going for low fat, low calorie 'diet' food was a big adjustment for me make, as in the past I have been a regular member of Weight Watchers!

                I find that 'Complan' has helped me to gain weight. In addition to this, I find it easier to eat several eat smaller meals/snacks throughout then day rather than big meals. Your dietitian might be able to get Complan (or a similar nutrition drink) prescribed for you, if your GP hasn't done so already.

                I hope you are a having an enjoyable weekend.

                Love,
                Kayleigh x
                Last edited by Kayleigh; 3 March 2019, 18:47.

                Comment


                  #23
                  Thank you Kayleigh yes the dietitian is coming tomorrow afternoon, speech therapist in the morning. It's going to be busy!! Thank you for all your advice. I have got some nutrition drinks from the gp. So I hope to put some weight back on. I have noticed my voice seems to be getting weaker. So I hope the speech therapist will help.

                  Thank you for the reply, I hope you are keeping well, Sheila x

                  Comment


                    #24
                    Wow, you have got a busy start to the week Sheila! I met my speech therapist before my dietitian as well. They should both be able to give you very good ongoing support and advice.

                    It's good to hear that you have already got some nutrition drinks. It's a gradual process, but hopefully you will soon start to gain some weight. At one point I was eating very little, and I found it difficult to increase the amount I was eating because I felt full up so quickly. But by following my dietitian's recommendations, which included drinking Complan, I was able to get back on the right track, and my weight is OK now.

                    My speech is a little slurred, especially in the evening when I am tired. I have got used to speaking more slowly than I used to, which makes my speech more easily understood.

                    Although we can't improve how capable we are of speaking, it is possible through speech therapy (e.g speaking exercises, such as breaking words down into syllables) to learn how to make the most of whatever ability we do have.

                    I speak more quietly than I used to, but my friends and family have got used to sitting near me during a conversations, because they know that my speech is not so good if I try to talk to them from a distance.

                    Sometimes speech therapists can also provide breathing and relaxation exercises. Your speech therapist will probably assess your ability to swallow, and talk to you about voice banking. But don't be concerned about being overloaded with information - as not everything I have mentioned is covered at the first appointment!

                    Anyway, I expect your dietitian and speech therapist will give you an overview of the support and help they provide, when you meet them.

                    I've had an enjoyable weekend with my family. Luckily I popped out to the shops yesterday to get a few groceries, as I woundn't have wanted to be out and about in the wind and rain today - nice weather for ducks though!

                    Best wishes,
                    Kayleigh x
                    Last edited by Kayleigh; 4 March 2019, 00:53.

                    Comment


                      #25
                      Hi Sheila and Dawn

                      Welcome to the forum, which I've found a huge source of information and support.

                      Sheila - have you thought about voice banking?

                      Doug

                      Comment


                        #26
                        Hi Sheila and Dawn

                        Good to meet you here as to t'were.

                        Doug beat me to it about voice banking, but this place is also recommended for practical as well as emotional support.

                        As my hands do not work very well I have been playing with some of the devices suggested in this forum with some considerable success.

                        I can now lift with my dead left hand using special glove I found here

                        Warmly

                        Andy
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #27
                          Glove

                          Originally posted by nunhead_man View Post
                          Hi Sheila and Dawn

                          Good to meet you here as to t'were.

                          Doug beat me to it about voice banking, but this place is also recommended for practical as well as emotional support.

                          As my hands do not work very well I have been playing with some of the devices suggested in this forum with some considerable success.

                          I can now lift with my dead left hand using special glove I found here

                          Warmly

                          Andy
                          Hello Andy

                          Please can you post details of the special glove you have found.

                          Many thanks Ann

                          Comment


                            #28
                            Thank you all for your comments, everyone has been so kind and helpful on here.
                            I saw the dietitian today and speech therapist. They were both very helpful and with lots of information etc.
                            The dietitian did mention that when I see the specialist for the first time in May. He will mention having a peg
                            done. I am not sure about this and a bit anxious. What are your views on pegs?

                            Sheila x

                            Comment


                              #29
                              Hi Sheila,

                              Its good to hear that your meetings with your speech therapist and dietitian went well today.

                              I can't advise you from personal experience about the PEG, as I don't have one, but I understand that many forum members do.

                              The MNDA provides quite a lot of information about tube feeding within its info about 'treatments and medication', and within that is a link to the 'my tube' website (which includes video content about tube feeding). I have provided links to them, below:-

                              https://www.mndassociation.org/about...nd-medication/

                              http://http://mytube.mymnd.org.uk

                              I expect you are feeling rather tired after such a busy day. Hopefully you are not feeling too anxious about things. Its good that the dietitian has mentioned the issue of the PEG today, so that you have got plenty of time to do some research and mull things over before you see your specialIst in May.

                              I hope you are able to get a good night's sleep tonight and that you will have a restful day tomorrow.

                              As it's getting late, its time for me to say goodnight.

                              Goodnight and sweet dreams,
                              Kayleigh x
                              Last edited by Kayleigh; 4 March 2019, 23:16.

                              Comment


                                #30
                                Hi Ann

                                Originally posted by Annb View Post
                                Please can you post details of the special glove you have found.
                                https://www.dobies.co.uk/Garden/Gard...174.htm#592500

                                https://www.activehands.com/product/small-item-aid/

                                Visit Forum: Equipment for more suggestions

                                I am a believer in physical activity improving mental state i.e. cheerfulness :-)

                                Warmly

                                Andy
                                Warmly


                                Andy

                                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                                "Things turn out the best for people who make the best of the way things turn out"

                                Comment

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