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Meeting my Palliative Care Team

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    Meeting my Palliative Care Team

    I am only just over a year in from my symptoms starting, and 3 months in from actual diagnosis, but on Friday I am going to the hospital to meet the Palliative Care Team. I appreciate it is all about "planning ahead" and gaining an awareness of how the later stages will be managed, but it is getting to me a bit.
    I have always been accepting and realistic about my (our) "life limiting condition", but this is the first time I have been apprehensive about going to an appointment.
    I appreciate the role the Palliative Care Team do, but I can't help thinking that they are the endgame, and once you are passed into their care you aren't coming back. It just feels too soon to be thinking about that - although I can see it makes sense.
    Have you folks had these meetings? How did it go?
    Just seeking reassurance please.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

    #2
    Relax we are palliative care from day one. It just means that that there are no drugs to cure us, therefore any drugs are there just to make us comfortable. I've been under palliative care for two years and counting. πŸ‘βœŒοΈπŸ‘‡πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Hi
      I'd say it's a matter of personal choice and individual need. Many people have found their palliative care team a huge support even at early stages, whether holistic or assisting with getting the right assistance.
      I personally have not had any access to this with my mnd as it has not been necessary or required by me so far (10 years).
      Whatever works for you.
      All the best. X

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        #4
        I love my palliative care team. The ot is fab and the doctor is really trying with my pain due to muscle wasting. I know you are not end of life but once diagnosed with a life limiting condition that is the team that you get allocated.

        Just maybe keep an open mind.
        Diagnosed May 2021 bulbar onset als.

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          #5
          Thanks folks.
          Hmmm, so they have the GOOD drugs then
          Hi, I'm Eddie.
          Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
          Still walking and talking, and wondering what the future will bring.

          Comment


            #6
            WheelsOfSteel "Palliative care is an approach that improves the quality of life of people facing the problems associated with life-limiting illness and supports their families."

            Eddie, why don't you go along to the meeting, see what they have to say, then you can have as little, or as much involvement with them as you want.

            It's normal to be introduced to your local palliative team when you've an MND, even though we often feel like frauds in using their services 😏

            And they can come up trumps on recommending meds or sourcing that elusive piece of equipment when other HCPs have an 'computer says no' attitude! xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

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              #7
              I remember feeling exactly the same the first time I had the discussion about the future. Afterwards I felt so much better having discussed these things with people that are there to care and help you. Good luck 🀞
              Foxes Never Quit πŸ’™

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                #8
                Hi almost worth noting that our hospice arranged a DS1500 form very early on which has its benefits.

                It fast tracks access to PIP, ESA and a blue badge, but also means that social services care packages are free rather than requiring means testing. Dont know if the latter is local authority specific, but takes one problem away. Alas doesn't help with dreaded modifications.

                Our hospice team are really good at coordinating care and highlighting that my husband is a priority. Even before needs increased. Our experience is that they are like a comforting hug right when you need them well before health needs are great.

                We wouldn't be without them and in the early post diagnosis phase they were invaluable in answering questions about "the end" and advising on how in control you can be when the time comes. It certainly took a lot of fear away so that he can live a quality life while he still can.

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                  #9
                  WheelsOfSteel I think (hope)you'll be surprised how well the meeting will go.

                  The hospice nurse who I have the most contact with is like a breath of fresh air. Nothing is too much trouble...however she also never pushes her point of view...ever. My views are 100% respected.

                  She is also a great link to my GP...she contacts them on my behalf and whatever I need appears!!

                  My personal view is hospice care is about keeping us (those with life limiting conditions) as well as possible in our own home & when eventually the time comes to check out they'll be there too. Wherever we decide that will be.

                  Useful to record how you feel now and then how you feel after your meetingπŸ‘πŸ»πŸ€—

                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                    #10
                    I'm scared right now . Alot to take in x

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                      #11
                      Is that correct if your under a hospice, care packages if needed are free without being means tested.

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                        #12
                        My husband has recently been referred for day respite but they are not providing this at present. So that is the only connection that we have at present.

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                          #13
                          Hairbsb try not to let it overwhelm you. I hope you won’t need too much help as yet. We’ve been fortunate that my husband has been relatively stable till this last year.xx

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                            #14
                            Piglet my son just sent me a pic as he is at a vegan restaurant and until I get a firm diagnosis from the head honcho neuro we have decided not to tell my son or my daughter. This has tipped me over the edge this evening x. I am not being positive this evening it just comes in waves and Christ this one is a tsunami.

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                              #15
                              Hugs are not just for mornings.

                              You need one now!

                              Herewith ...

                              Doug
                              Diagnosed April 2017

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