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A Day of ups and quite literally downs!!

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    A Day of ups and quite literally downs!!

    Today has beeen an odd day. Popped round to my neighbours and as I came out, I went down flat on my face: now sporting an amazing black eye and have broken my new glasses. But the upside was that I found out today that I have been awarded PIP at enhanced rates for both daily living and mobility which takes the sting of having to close down my little embroidery business which has been a useful top up to my small teacher's pension.

    Tomorrow will be interesting because Neuro rehab are coming to visit for the first time and I look like I have been in 10 rounds with Antony Joshua and come out of it worse off

    #2
    Oh Karen I hope you have spare glasses. Perhaps sunglasses to cover it up.

    Love and hugs
    Denise xx
    when i can think of something profound i will update this.

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      #3
      Originally posted by denise View Post
      Oh Karen I hope you have spare glasses. Perhaps sunglasses to cover it up.

      Love and hugs
      Denise xx
      Fortunately I kept my old ones so can still see .... sunglasses sound like a good idea

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        #4
        Karen62 ouch sorry to hear you had a fall.

        Good news though about PIPπŸ˜‰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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          #5
          Karen62 So sorry to hear about your fall, it’s a constant risk and such a shock.

          Do you have a blue badge? If not you’ll be able to get one now you have the enhanced mobility PiP. Very much worth having even if you don’t drive yourself.

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            #6
            Tony thank you and I am by nature slightly clumsy but it seems even more so now! Yes got my blue badge last Saturday - Cambrigeshire were even quicker than PIP and it's already proved to be useful.

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              #7
              Karen62 You're well & truly initiated into The Club now Karen 😍😍 (but don't fall again πŸ˜‰)

              Hopefully you won't be too sore tomorrow and, in one way, it's 'good' that the Neuro Rehab person/people will see you and realise just how easily we can fall and hurt ourselves...

              Congrats on the PIP. 😘
              ​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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                #8
                Good to hear about your PIP. But not so good about the fall, that sounds really sore. I have managed a whole week since my last proper fall, so feeling really quite pleased with myself 🀣
                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.

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                  #9
                  So sorry for your fall Karen62 . It really shakes us up mentally as well as physically.

                  As Ellie says it is good that your rehab team will see you like this.. even though it probably doesn't seem like it to you.

                  Take care and stay safe xxπŸ˜˜πŸ€—

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                    #10
                    Sorry to hear about your fall. Much love and hugs πŸ€—πŸ™β€οΈ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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                      #11
                      Sorry to hear about your fall and broken glasses. Today I tripped for the first time, on a kerb on the pavement, but managed not to fall. Am getting to the stage when I think it's time to use my walking poles whenever I go out. My legs are definitely getting weaker. Any advice from anyone on here about when to start thinking about a rollator? And where do you get them from?
                      Diagnosed November 21, ALS limb onset, started in right hand June 2020

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                        #12
                        Lucky escape Jane!

                        Originally posted by Jane View Post
                        Any advice from anyone on here about when to start thinking about a rollator? And where do you get them from?
                        The 'when' to use any piece of equipment is quite subject: some people start using aids early on, others only when their backs are against the wall...

                        I started using a rollator as soon as I felt unsafe and actually, I could get around faster with one.

                        Your OT is the person to contact for an assessment. 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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                          #13
                          Thank you everybody, eye looks truly grim today, but neuro rehab meeting went well, they have suggested a stair lift, half step for step down to the kitchen and a rollator. Also told me to use a wheelchair outside. Will be looking at buying an electric wheelchair because I am not eligible here unless I need an indoor/outdoor chair.

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                            #14
                            This makes me angry because you will need an indoor wheelchair eventually. I brought mine second hand. I had it serviced. Its a tdx sp2 and I only paid Β£300. It cost Β£4000 new.
                            X
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              Thanks for advice re rollator Ellie. Will contact OT soon.
                              Diagnosed November 21, ALS limb onset, started in right hand June 2020

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