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    Managing emotions - upcoming podcast episode

    Hi all,

    We are planning our next few months podcast episodes and would like to include one around managing your emotions whilst living with MND.

    We would love to share and hear some of your top tips on how you do this?

    These may be used as prompts for questions we ask our guests or across our communication channels when promoting the episode. All comments will remain anonymous if shared across any of our channels.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Can’t wait to hear some of these , because my sudden crying bursts are driving me nuts !

    Comment


      #3
      Originally posted by Admin_MND View Post
      ... These may be used as prompts for questions we ask our guests .
      Are the 'guests' HCPs, people with MND, carers etc?

      Thanks,
      Ellie.

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

      Comment


        #4
        Originally posted by Ellie View Post
        Are the 'guests' HCPs, people with MND, carers etc?

        Thanks,
        Ellie.
        Its all in the pipeline at the moment Ellie (episode roughly due to be released late September time) but the plan is to have a person living with MND and her partner/carer, if they agree and a relevant member of staff from our care team
        Our working hours are Monday to Friday 8:30am until 5pm

        Comment


          #5
          Hello Patw - what you are feeling is grief...............its the absolute pits when you have no control over it, anywhere anytime - I am so sorry for you as I know as I am suffering actual grief over the loss of my son........true grief coupled with anticipatory grief is enough to do you in I fear...........I have no control over myself and I cant help but think what the hell my life is going to be like after the event.

          Best wishes

          Sue
          Husband Albert diagnosed PMA Feb 21

          Comment


            #6
            Patw Have a read through this Pat, it helps explain a lot xx

            https://www.mndassociation.org/app/u...al-support.pdf
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Thanks both of u x I’m ok in myself just randomly cry drives me nuts

              Comment


                #8
                Prozac nuff said 😁xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Admin_MND My view would be that psychological support services should automatically be offered from day one of diagnosis. The reality for me was that a consultant - who really barely knew me -gave me devastating life changing news that she suspected I had MND and would send me for a second opinion. Then I walked out of that office. I live alone...which is my choice however means more time with your thoughts. Nothing more from anyone for 4 weeks. In that space of time for all the neurologist knows I've taken my life. It was a thought I had constantly...the fact I have nothing stronger than paracetamol at home was probably no bad thing.

                  I know that a colleague who lives in Hackney and diagnosed with MS was immediately referred for (which happened within days) psychological support...not sure why that doesn't happen for MND...maybe it does in some areas but not mine.

                  I would say that in the weeks I waited to hear from anyone about what happens next I lost a stone plus in weight...unable to eat unable to sleep. I used CBD oil to help with anxiety and sleep. I know what services are available hospice support...local well being hubs and more. It's my job to know such things for a living. I have really good friends and support.

                  The Neuro rehab team who are supporting me have all the disciplines except psychology although in fairness they have the funds apparently but unable to fill the post.

                  My view is immediate psychological support should be a given. I realise some may decline however should be available. Not for the person to seek it out themselves but offered on day one. There's a lot of rhetoric about well being that gets talked about...my personal experience was that my well being was sadly ignored.

                  Just to add I am emotionally in a better place than I was so not having those dark thoughts. Not sure how helpful that is...but helped me to write it down
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    I agree LindaB. I was in a really bad place in November and when i asked Kings Hospital for help they sent me an appointment to see the MND councillor in late February!

                    Comment


                      #11
                      By the Lord Harry! The Euros have already got me skrieking like a baby and I don't even support Wales!!

                      I need you to wish me luck for tomorrow or my carers will really think I've lost it.
                      Copyright Graham

                      Comment


                        #12
                        Originally posted by Graham View Post
                        By the Lord Harry! The Euros have already got me skrieking like a baby and I don't even support Wales!!

                        I need you to wish me luck for tomorrow or my carers will really think I've lost it.
                        Wales were fortunate to get a draw and I hope they can do better against Turkey on Wednesday. Great result for England today and good luck to Scotland tomorrow although if they progress to the knockout stages I may regret that as I will be in Scotland in 2 weeks.
                        I’m going to do this even if it kills me!

                        Comment


                          #13
                          Yes, Wales rode their luck to pull off a somewhat flattering result.

                          Things are looking ugly for Scotland and I am looking forward to a ritual slaughter. No wonder Denise is out of the country, eh Barry!

                          I have to report that I blubbed Barry. Like a baby. I tried to cover with a forced cough to no avail, much to the amusement of my carer.
                          Copyright Graham

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