Announcement

Collapse
No announcement yet.

Trying to find my way round the forum?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Trying to find my way round the forum?

    Hi Lost my beautiful wife to this terrible condition after 18 months .The thought of what she went through is tearing me apart ! As they say it’s good to talk ! And I do feel better writing something like this to others that have similar experiences Looking to helping any way I can when the time is right Thanks

    #2
    Not sure that welcome is the right thing to say but happy to help in any way we can 😁😀🤗🍪xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      Petersnd janice I'm sure you have plenty of wise words, knowledge and advice to impart Peter, and a lovely way to honour your dear Jan. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        sorry, you joined us in such tragic circumstances peter but welcome.
        my wife was taken out of a canal 13 years ago and it tore me apart for years. after a while, you start to think of the good times.
        It's all funny

        Comment


          #5
          Petersnd janice I’m sorry for your loss but welcome
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

          Comment


            #6
            Petersnd janice . A very warm welcome . Im so sorry for the loss of your beloved wife. Xx

            Comment


              #7
              Welcome Petersnd janice - I am pretty new to the forum and I'm sure will benefit from your advice. Just sorry that you lost your beloved wife to this condition. Sending gentle hugs x
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

              Comment


                #8
                Hi Peter
                nice to meet you. I hope you join in whenever you can. Lovely people on here.
                Denise xxx
                when i can think of something profound i will update this.

                Comment


                  #9
                  Thanks to you all but as you all know it does help to communicate👍

                  Comment


                    #10
                    New here too. Welcome to the forum I find it very helpful to communicate with other people who know what you are going through hope you will benefit too.

                    Comment


                      #11
                      👍

                      Comment


                        #12
                        Can’t work out where on Forum to find out about availability of carers in South Hampshire for respite for my daughter whose husband has MND. They’re doing their best but totally worn out & I’m 600 miles away.

                        Comment


                          #13
                          Originally posted by beg View Post
                          Can’t work out where on Forum to find out about availability of carers in South Hampshire for respite for my daughter whose husband has MND. They’re doing their best but totally worn out & I’m 600 miles away.
                          Don’t think the forum will give you the answers you are looking for as it doesn’t hold that sort of info. If you haven’t already done so a good place to start would be to get your daughter to contact the connect team on 08088026262 or email [email protected] who can put her in touch with one of the several branches in Hampshire.

                          Comment

                          Working...
                          X