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    Never a dull moment

    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
    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.

    #2
    Originally posted by TinyLady View Post
    Has anyone else had a few weeks in their local hospice?
    I've often been an inpatient at my hospice (symptom management, respite and sorting out new carers) and every time I was there was a very positive experience and, if anybody can get things hurried on, it's the hospice Social Worker, OT and Physiotherapist.

    'Enjoy' your stay and take advantage of all the services offered 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


      #3
      TinyLady glad the hospice has been arranged so soon. I hope all goes well for you whilst on respite with good support when you get home. As Ellie has said enjoy the rest and the care from the lovely staff xx

      Comment


        #4
        Ellie thank you for your reassurance. I seem to never get a chance to catch my breath at the moment. It's good to know this is support available when needed. They are being so kind and I feel so much safer. At home alone was not working out well!

        I can't believe they even serve alcohol. Just a shame I'm not allowed my children to visit, only my husband 😒
        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


          #5
          Originally posted by TinyLady View Post
          Just a shame I'm not allowed my children to visit, only my husband
          My last respite I was allowed two nominated visitors from my household each day, who were tested before being allowed in to see me, so I was lucky enough to see both my kids and husband over the two week stay. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          ​

          Comment


            #6
            TinyLady enjoy your stay...gives you breathing space to think, knowing you're well cared for.
            Good news about alcohol πŸ˜‰πŸ‘πŸ»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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              #7
              I’m really pleased that you are being well looked after. I wish you well in recharging your batteries and getting some good rest and care. Sending a big HUG.

              Richard
              Richard

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                #8
                Glad that you’ve got good care in the hospice xx
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  Sounds wonderful enjoy your holiday girl πŸŽˆπŸŽ‚πŸ˜„πŸ€—xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    That sounds good TinyLady. Useful to have β€œtime out”
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #11
                      TinyLady so glad you're getting that help. Hope you can relax a bit and they help get things sorted for you 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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                        #12
                        Thank you, I'm getting quite settled and we are hoping go get voice banking done while I am here too. Eaten so much food! Having it cut up and regularly provided with no effort is amazing. I've been crying happy tears 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


                          #13
                          Originally posted by TinyLady View Post
                          Thank you, I'm getting quite settled and we are hoping go get voice banking done while I am here too. Eaten so much food! Having it cut up and regularly provided with no effort is amazing. I've been crying happy tears πŸ˜†
                          Good to hear xx
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                          Comment


                            #14
                            TinyLady I'm so glad it's working out for you at the hospice. My husband was only ever an out-patient at our local hospice but he went regularly every Thursday to spend a few hours there and it was always a good experience for him. Even just having access to a doctor, therapists, a hair dresser etc, not to mention the lovely nurses, was a good support. It was also a lot of peace of mind for me to know that he could be admitted as an in-patient to a familiar and caring place if anything happened to me as he was completely dependent on me for the most basic of needs.

                            I wonder if your husband would be allowed to take you out for a couple of hours somewhere in a manual wheelchair so that you could see your children?.... Just a thought.

                            Here's hoping that your home adaptations don't take too long but it's good that you are getting so well looked after in the meantime!
                            Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                            Comment


                              #15
                              Betty May - I'm glad your husband got so much support from his hospice. I was apprehensive and on top of an already frantic few weeks thought it might just be too much. But they are good places to get a rest and more intensive assessment and support.

                              I did get pushed for a walk round the local park by hubby yesterday and met up with my daughters... but it was freezing! After a while I had to admit defeat and come back 🀣

                              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˜†
                              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

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