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    Rob burrows

    Rob Burrows next documentary is on BBC 2 tomorrow the 18th at 7pm .

    I've shared it on Facebook for friends and family. It will give them a real warts and all insight to the challenges the patient and carer have to deal with.

    When I was diagnosed 18 months ago, not many friends really knew what it was.

    Any one else watching it?
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 hi. Am planning on watching it but am probably going to wait and watch in my own time on BBC iplayer. My sisters want to see it. My mum doesn't want to watch it, I don't think she wants to see what the progression goes like and she is coping by being very much in denial of the future so this program would make it too real for her. Hopefully it won't be too upsetting to watch but probably will be! X
    Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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      #3
      I'm away for a few days for much needed rest after nan was taken poorly a few weeks ago. She's doing OK for now so got a few nights away close to home if I'm needed (was supposed to be on a dive boat on egypt, thankfully I have a very understanding husband!) so I'm going to watch it once I'm back. Going to try and have a few days not focusing on MND, she says while posting on an MND forum!

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        #4
        Claireflo enjoy your much needed break away. Sounds a good plan. Although sorry to read the different destination! Hopefully the dive boat will happen another time xx
        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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          #5
          shelly21 Yes, I plan to watch it. I have seen a few over the years. 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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            #6
            Claireflo Have a lovely break (from us too πŸ˜‰)

            Treat yourself to VR goggles and go diving in the Red Sea, failing that, there's always Finding Nemo 🐠 and a bucket of popcorn.😊 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
              Zante tbh denial happens lots with rare diseases. But maybe its your mothers way of coping. X
              Diagnosed May 2021 bulbar onset als.

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                #8
                Claireflo I've tried that also re non mnd days! Failed πŸ˜†

                you so deserve down time. I'm hoping you both can have a chill. X
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  shelly21 am not sure I worded it right I guess it's not denial as such and she totally accepts the consultant x 3 diagnosis for me!

                  It's more the inability to see where it will lead and how it progresses. That's what she can't face. And not getting anything done like even look into adaptions for a wet room etc. Putting things off. I dread the future even more because of some things like that! X
                  Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                    #10
                    Ellie i did YouTube about 4 months into diagnosis. Found lots in Australia re actual videos. Then I found health talk org. I found that very helpful re topics of timing of peg etc.

                    It was after I had been to my first face to face mnd group. I saw such a variety of progression etc. I knew that I would prefer to know than not
                    x
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Zante re wet room, do you live with your mom? I'm sorry I've not read it right. Or is it you putting things off.

                      The thing I know is we all progress at different rates and physical decline. X
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        shelly21 no u read it right. Mum putting things off. I suppose I am a little also! Yes I do live with my mum. Am single and can't afford my own place! Company for each other also xx
                        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                          #13
                          I'm going to watch it ! Rob Burrow attends the same MND clinic as I do.

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                            #14
                            Zante well you go at the pace that's good for you. im sure when the medical people advise etc then you can act.

                            Sounds good re company and I'm glad you're not alone x
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              Oops sent too soon.sorry.

                              I'm also going to try and see Kevin Sinfield on the part of his ultra marathons through Leeds ( as long as it's not too early !)

                              I'm sure it will be an emotive watch xx

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