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Eye problem just to add to things

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    Eye problem just to add to things

    It's a busy old time . Recovered from infection but now developed a problem with my eye ( not MND related apparently)
    Having some dye put in then they are looking at what to do to save my sight.
    MND seems to be progressing a bit with my limbs especially struggle with the cold.
    This insipid disease ! Struggled a bit today so having a moan. OT coming out next week for review plus respiratory nurse so see what's what. Sorry for rambling on.
    Love and light to you allxx

    Hi derbyram

    Well if you cant moan anywhere else then here's the best place. Sorry things are being a pain as if you haven't got enough problems.

    So I'm sending a really big hug and a kiss. I know it wont solve anything but I hope it makes you feel a bit better knowing me and the rest of the gang are thinking of you.

    when i can think of something profound i will update this.


      Derbyram21 sorry things feel tough just now….hoping OT & respiratory can come up with practical solutions 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.​​​​​​


        Originally posted by Derbyram21 View Post
        Having some dye put in then they are looking at what to do to save my sight.
        Oh my days Derby, that's some serious stuff, sorry to hear this - it's one eye?

        Love and best wishes to you xx

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



          Hoping things improve for you with the right supports x


            Derbyram21 - I do hope you can get some help with your eyes, you have so much to deal with already. Sending a gentle hug x
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.


              Thanks everyone xx