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    #16
    Originally posted by TinyLady View Post
    [USER="26742"]

    Council emailed this morning and said I'm not eligible for funding for my adaptations... so stuck in a vicious circle for now. I think they want me in a bed in my living room with strip washes or something. God forbid at 46 I would want some kind of normality in my life... πŸ˜†
    Agghh, no that is not acceptable. Hopefully you (or someone on your behalf) can appeal - can the MNDA help with this I wonder?

    Glad you got out yesterday and saw your daughters. It's turned really cold here too - the mountains on the horizon have turned white again - hope the white stuff stays there, don't want any here!
    Husband died 14 months after MND diagnosis.

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      #17
      Betty May - I'm hoping the staff at the hospice will help me unravel it all. Getting so many mixed messages. I just find it makes everything feel so much worse. An extra layer of stress and confusion!

      Browsing my favourite craft site this afternoon to buy myself a birthday present... 🀣
      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
        Originally posted by TinyLady View Post
        I'm hoping the staff at the hospice will help me unravel it all.
        Ask to speak to the Social Worker TinyLady as well as the OT.

        Originally posted by TinyLady View Post
        Browsing my favourite craft site this afternoon to buy myself a birthday present...
        Happy Birthday!!

        Love Ellie. 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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          #19
          Yes when is your birthday? Xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #20
            My birthday is on Thursday - had planned a long weekend away... sadly not to be.
            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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              #21
              Hi TinyLady . Im so sorry life is so difficult whilst your home adaptations are being sorted. I remember feeling totally overwhelmed by everything I needed to change

              Its good you're being well looked after and having a rest in the hospice in the meantime. Keep looking at birthday 🎁 presents. !!

              Love Debbie x

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                #22
                Deb - Council said we will not be eligible for a grant today... so basicaly feel like working hard and saving was a mistake. I'm far too young to retire and so is hubby. Seems terribly unfair.

                Absolutely NOT going to ask for contributions to adaptations for my birthday 🀣
                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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                  #23
                  Appeal πŸ‘πŸ€™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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                    #24
                    TinyLady
                    I'm far too young to retire.
                    Don't dismiss this option if you have a private pension, ask for a forecast and see what you would be getting.
                    I really didn't want to retire (I'm 53) and loved my job. The reality was that I couldn't continue. Over a 3 year period (I didn't have an diagnosis of MND at this point) many changes were put in place to support me, but by the end, even giving phone consultations was getting difficult because of my high levels of fatigue.

                    Reluctantly, I chose ill health retirement. I'm not saying it was an easy choice. As part of the package I get my monthly pension (so I can still pay the mortgage) and also a lump sum that will go some way to pay for alterations to my home (but not all)! It has relieved a great deal of stress.

                    It would be worth looking at what you might get.
                    Last edited by Tabbycat; 1 February 2022, 12:38.
                    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                    Comment


                      #25
                      Hi,
                      Glad you are getting some support around your needs and it is really important to keep enjoying the things that are important in your life, like your crafts. I love art/painting and it's the things that are nothing to do with mnd that help to keep you going and give some 'normality'.
                      The MNDA may be able to provide some financial grants towards adaptations??

                      I was only in my 40s when diagnosed, I did take early retirement/ill health retirement from work when I could no longer work. With Tier 1 (the highest level) medical retirement, your work pension is based on what you would have got if you had retired at normal age (67) and not reduced because you have had to leave early. Possibly an option to consider when you feel ready/able?

                      Sending positive thoughts x

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                        #26
                        Thank you for some good points (yet again!). I'm not sure I have a massive pension pot, but I can certainly investigate some options. When I get out of the hospice I am meeting with HR at work. They have been great so far - I've already been off for nearly 18 months. One thing we all agree on is I cannot work. I'm exhausted from sitting in a chair all day! Xx
                        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.

                        Comment


                          #27
                          TinyLady

                          Originally posted by TinyLady View Post
                          Was discharged today ...
                          I'm so happy for you πŸ‘πŸ‘

                          Home will probably take more out of you than the hospice did so, given that your energy reserves are already non-existent, it's best to be choosy about how to expend it... πŸ€—πŸ€—πŸ˜˜πŸ˜˜

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

                          ​

                          Comment


                            #28
                            Ellie - I wish I could. I need to recruit 2 PA's ASAP as finally been awarded care hours (quite stressed about this). I also have some minor temporary adaptations being put in over next couple of days (including stairlift πŸ™‚).

                            Plus work to sort out/ meet with and discuss what happens now I can no longer work.

                            Plus fundraising to start for wetroom and lift. Oh and how to get powerchair anywhere without an adapted car πŸ˜†

                            Then all the normal family and home stuff that stacked up while I wasn't here... phew...

                            I just need to do my best to keep eating even though I'm not hungry.

                            But good to be home and looking forward to a night in my bed πŸ™‚
                            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.

                            Comment


                              #29
                              Originally posted by TinyLady View Post
                              I need to recruit 2 PA's ASAP as finally been awarded care hours (quite stressed about this)
                              Don't blame you for feeling stressed Tiny 😟

                              Do you get any help in recruiting the PAs from whoever granted you the care package? xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

                              Comment


                                #30
                                Originally posted by TinyLady View Post
                                So, yesterday I was admitted for a few weeks to the local hospice. It is lovely here and the staff are so kind. I was really overwhelmed and scared to come in.

                                Especially leaving my husband and children. But it seems the only way they can even start to catch up on managing (and identifying) my symptoms.

                                I just hope I escape soon and with support in place (and a few less bruises too 🀣) so I can enjoy myself a bit!

                                Has anyone else had a few weeks in their local hospice? Did it help speed things up?xx
                                Glad that has worked out well for you. My MND coordinator (not sure what the right word is) is from our local hospice the Seven Hospice in Shropshire and has been very helpful. Not been to the hospice yet but it has a good reputation. Hope to go to a social thing there next month. I have never actually met another person with MND in person my only communication with anyone with MND is on here and you are a very nice group.

                                Have a physio coming to the house tomorrow hopefully he will give me some good exercise advice.

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