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Neuro Rehab Community Team (Physio) visit yesterday💙

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    #16
    LindaB I was so exhausted after reading your account yesterday that I forgot to comment! What a marathon you went through, but some positive outcomes. Great to get a GP visit too
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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      #17
      Thanks PeterPan only someone in our situation truly understands about fatigue...😉👍🏻xx
      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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        #18
        Oh my days LindaB ! What an exhausting and scary experience that must have been. Its not surprising you are feeling fatigued.

        Its good that support is on hand for you, however. Im not on my feet but when I was I had a 3 wheeled rollator which I could turn to help me transfer.

        Love and hugs to you xxx😘🤗

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          #19
          Thanks Deb I will be sending back the 2-wheeled frame they left me🙄

          Hope you're enjoying your hols😘😘💙
          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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            #20
            https://www.acprc.org.uk/publication...tion-leaflets/

            How to cope with being short of breath - breathing exercises
            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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              #21
              LindaB thanks for posting the link. That's a really useful resource.
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                #22
                Hope you're feeling better today Linda. How insensitive to press you when you were feeling so breathless and tired, no wonder the blood pressure rose. I was impressed when you said someone was giving you a home visit, but sorry they didn't do equipment, though hopefully you are referred now. I had a stressful day yesterday going to the hospital respiratory physios, but will do a new post for this. 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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                  #23
                  Heather R feeling much better but still overly breathless IMO.

                  In defence of the physio I don't think she overly pressed me but my post may have been badly written. My view is there may be a blood pressure issue...keeping an eye on it.

                  Going to hospital when mobility...breathing etc is a problem to me is all wrong. We deserve community support...maybe there needs to be a campaign around this?

                  So sorry to hear you had a stressful day ....will read your post with great interest.

                  💙😘

                  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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                    #24
                    LindaB Definitely not Covid?? 😘😘
                    ​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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                      #25
                      Originally posted by Ellie View Post
                      LindaB Definitely not Covid?? 😘😘
                      Not covid...🙏💙
                      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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                        #26
                        My husband is suffering with this right now. We also had a home visit from a GP who told him he had a upper respiratory infection and gave him antibiotics. Nothing has improved. His blood pressure was really high and blood oxygen is 91/92. He hasn’t slept properly for about a fortnight and is exhausted. He is not on NIV yet! Fortunately, we have an appointment at Papworth tomorrow morning. We need solutions as this is so stressful.

                        I hope things have settled for you.

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                          #27
                          A warm welcome to the forum ShelleyMarie sorry to hear that your husband is poorly.

                          I don't know how long he's been taking the antibiotics but, if he hasn't improved after a few days, he may need stronger ones or, I'm sorry to say, IV antibiotics.

                          It's great that he has an appt at Papworth tomorrow.

                          Wishing you both all the best.

                          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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                            #28
                            Hi re breathlessness my palliative care doctor prescribed it for pain but she also said 5mg (low dose) is used for breathlessness.

                            Linda & shelleymarie don't know if this would help x
                            Diagnosed May 2021 bulbar onset als.

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                              #29
                              Originally posted by Ellie View Post
                              A warm welcome to the forum ShelleyMarie sorry to hear that your husband is poorly.

                              I don't know how long he's been taking the antibiotics but, if he hasn't improved after a few days, he may need stronger ones or, I'm sorry to say, IV antibiotics.

                              It's great that he has an appt at Papworth tomorrow.

                              Wishing you both all the best.

                              Love Ellie xx
                              Thank you Ellie. I am hoping to talk to them again tomorrow about cough assist as he gets exhausted trying to clear mucus. Also, may be time for NIV. I think we’ve been fobbed off at previous appointments when querying cough assist and now feels like we’ve hit a crisis. Frustrating and scary.

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                                #30
                                ShelleyMarie If he isn't already on it, maybe also ask about Carbocisteine, a medicine which can help thin secretions, making them easier to cough up (with or without a cough assist device) 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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