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A Day of ups and quite literally downs!!

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    #16
    Originally posted by shelly21 View Post
    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 £300. It cost £4000 new.
    X
    Me too Jane. They have said they will do an assessment, but OT said that they have become really strict on who gets help now. I can ‘walk’ around the house but only if I am holding on to furniture, walls and anybody close enough for me to grab.

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      #17
      Karen62 - I had to say I would mainly use it indoors to get mine from NHS. But with MND diagnosis I was told they do fast track you.

      Mine came just in time as I started falling at home and now wouldn't manage without it. I hope they sort yours soon 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.

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        #18
        It definitely sounds like you need a chair now. Do you have a contact at the MNDA who can help argue your case. They often know who to speak to a might be able to help.

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          #19
          Jane a rollator may be helpful depending how you use your walk/balance. . I was given one quite early on due to my very poor walking, but my feet are the worst problem with degrees of foot drop in each foot, and back weakness bending etc. Due to this my upper leg/hip does all the work in walking....in my case, two walking sticks allows a better leg swing to walk, rather than a rollator which causes me to 'shuffle' more. Gauge how you walk and use your legs, keeping in mind your core stability. All the best.

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            #20
            Originally posted by Olivia H View Post
            Jane a rollator may be helpful depending how you use your walk/balance. . I was given one quite early on due to my very poor walking, but my feet are the worst problem with degrees of foot drop in each foot, and back weakness bending etc. Due to this my upper leg/hip does all the work in walking....in my case, two walking sticks allows a better leg swing to walk, rather than a rollator which causes me to 'shuffle' more. Gauge how you walk and use your legs, keeping in mind your core stability. All the best.
            Thanks Olivia. I have decided to use my walking poles if walking for more than 15 minutes and they make a huge difference, giving me more energy and confidence. Not sure how long I will be able to grip the poles though as my hands are my main problem, but for now I am very grateful that I am able to walk. I will ask my OT about a rollator when I next see her.
            Diagnosed November 21, ALS limb onset, started in right hand June 2020

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              #21
              A small victory today! I have an appointment for a wheelchair assessment booked. Now I have to just wait and see what they say when they come on the 11th. I am really hoping that they will help me.

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                #22
                How did you get that Karen? I can’t figure out who to contact.
                Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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                  #23
                  Hakuna
                  I can't remember who refered |Thomas

                  Either the OT or MND nurse.

                  The wheelchair services, implied that people with MND always get a power wheel chair.
                  Mention that your mobility and safety are deteriating (sorry for spelling, no predictive text). So time is of the essence.

                  Make sure you have level access, Thomas is trapped inside with 3 inches of PVC at bottom of door.

                  Waiting at least 6 months for a new doorway.
                  Donna

                  Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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                    #24
                    Thank you Donna
                    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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                      #25
                      Originally posted by Karen62 View Post
                      A small victory today! I have an appointment for a wheelchair assessment booked. Now I have to just wait and see what they say when they come on the 11th. I am really hoping that they will help me.
                      I was referred by the MNDA care co ordinator and my gp - I live in Cambridgeshire and it has taken a lot of convincing to get them to do the assessment. My sister who lives in Cheshire had far fewer problems get her assessment

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                        #26
                        Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. 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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                          #27
                          Originally posted by Ellie View Post
                          Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx
                          Oh thank you Ellie will have a look at that

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                            #28
                            Originally posted by Ellie View Post
                            Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx
                            Great link.....cheers👍🏻😘
                            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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                              #29
                              Originally posted by Ellie View Post
                              Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx
                              Excellent link Ellie thank you for posting, I hadn't previously come across this.

                              It has been also been really useful in helping my husband see what is likely to be needed.
                              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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