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    GaryM Great news - one less thing for you both to worry over.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      Originally posted by Shaun View Post
      Hi Gary,
      hope you don’t mind me asking, I’m 2 months in since applying, did you have a phone interview or straight forward claim approved,
      ( I’m not expecting full award as I’m still mobile)
      shaun
      Don't mind you asking at all, Shaun. Nobody contacted me at all. My consultant did send a DS1500, but I don't think this speeded up the claim. I wasn't sure what level I'd get as I can still walk. Someone told me that with a confirmed MND diagnosis you automatically get the full amount because of the rapid progression, but I don't know if that is really the case. I also raised the length of time it was taking, with my MP. Not sure if that had any effect either.
      Each day is made easier with a bit of humour.

      Comment


        Originally posted by SueM View Post

        Hi Gary, I’ve got the forms to fill in, wasn’t sure when the right time would be to apply. I too am thinking that I will be lucky to get my pension so at least I will hopefully get something for all the years of NI.
        love Sue x
        Hi Sue. I claimed the day after the MND consultant had confirmed my diagnosis. I was originally told it was MND in July but then I was referred by my original consultant to a specialist MND consultant. As the claim form asks for the name of your consultant I was reluctant to give the name of the original one in case any communication got lost and I didn't know the name of the one I'd been referred to until I saw him in September. At the time I filled in the form I had no use of my left arm, badly affected speech and my right arm was beginning to get weaker. In the three months since, my right arm has become a lot weaker and I now need my wife's help to wash, dress and eat. Hope this helps.
        Each day is made easier with a bit of humour.

        Comment


          Originally posted by GaryM View Post

          Hi Sue. I claimed the day after the MND consultant had confirmed my diagnosis. I was originally told it was MND in July but then I was referred by my original consultant to a specialist MND consultant. As the claim form asks for the name of your consultant I was reluctant to give the name of the original one in case any communication got lost and I didn't know the name of the one I'd been referred to until I saw him in September. At the time I filled in the form I had no use of my left arm, badly affected speech and my right arm was beginning to get weaker. In the three months since, my right arm has become a lot weaker and I now need my wife's help to wash, dress and eat. Hope this helps.
          Gary, thank you that’s very helpful

          Comment


            Dina – In Memoriam

            As we approach the first anniversary of Dina’s death, I’ve been desperately trying to find something positive to post here.

            I’ve failed. The last three months have gone remorselessly downhill for me.

            I’m hoping that somebody will be able to post something joyful here and keep this wonderful thread she gave us – and her memory – alive.

            Many thanks!
            Doug

            Comment


              Firstly something positive about Dina. What a lovely lady, easy to get along with and positive right up to her end. I counted her a personal friend despite having only had one face to face with her. She still figures in my minds eye.

              Now for other positivity. Firstly, we’re relieved that our four family members in Holland with COVID-19 are on the mend. The first to go down with it has now had a normal temperature for two day and feels clear of it.

              I’m still wobbling about with my walker at home 38 months after diagnosis but I’m sitting like on my rise and reclaim chair just now. My feet are up like lady muck. I got a smashing book off my daughter ‘Sarah Waters,’ Fingersmith.’ I‘ve set myself up for an afternoon with this, what indulgence 😉, Lynne
              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


                Oh Doug , I'm so sorry you have been going downhill recently. It is lovely to hear from you, however and thank you for posting on here to remind us of this thread.

                I will always remember Dina's positivity, humour and caring nature. I remember her sending a message to anyone alone at Christmas in what must have been a matter of days before she died. Such an inspiration.

                This Christmas has been especially poignant and I have missed being with friends and family. We did have an hilarious brunch in the garden trying to open presents and juggle bacon sandwiches and mulled wine in the freezing cold. It took the rest of Christmas for me to warm up and my sons were emotional because we were not together for the day but we appreciated being able to see each other.

                Like Dina, I try to appreciate the positives and I know that I am lucky to be eating, talking and breathing relatively normally 3 years after diagnosis and also I am lucky my husband is a brilliant carer. I am relieved my son and his wife, who is pregnant recovered from COVID and I am so excited about our first grandchild. I am also hopeful about receiving a vaccine soon.

                Like Lynne I am comfortable in my riser recliner, especially when I have a good book or music.

                Big hugs to you Doug x ( there's an extra x for you !)
                Love Debbie x

                Comment


                  I wish I had known her. We have a short but precious time here and when one goes we all feel it. RIP Dina. x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    Many, many thanks folks!

                    Doug x

                    Comment


                      I met the lovely Dina in hospital, we hit it off straight away, I was only in a couple of days but we always chatted and she even persuaded me to to get my peg done before I needed it. R.I.P lovely Dina 💞
                      Janette x

                      Comment


                        Getting used to Nippy4 and being hoisted.

                        Been awarded CHC via fast track.

                        Doug

                        Comment


                          Doug so pleased about CHC. That will make a huge difference

                          Comment


                            Great news, Doug - most definitely a good thing to Celebrate!!

                            Thanks for the update xxx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              I celebrate the true friends I have discovered after my diagnosis. 😄🤗😍x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment


                                So lovely to hear from you Doug,

                                I am so glad you're getting some things sorted and you are getting used to the adjustments you've had to make.

                                Thank you for posting on this thread,
                                Love Debbie x

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