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Neuro Rehab Community Team (Physio) visit yesterday💙

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    Neuro Rehab Community Team (Physio) visit yesterday💙

    For about 2 weeks I've been feeling increasingly breathless...even just standing leaving me gasping for air. Coupled with this my cough strength is virtually non-existent. Having episodes of coughing trying to clear my crackling chest; causing numerous sleepless nights.

    Reading posts in the forum I figured I might need a cough assist machine....saline nebuliser....medication to thin secretions or all the above.

    I mentioned my thoughts to the Neuro Rehab Community Team & they advised they dont issue respiratory equipment (that's the hospital respiratory team) however they do assess/measure cough strength. So yesterday a physio (new person to me)from their team came about 3ish. My daughter was here to act as my voice & I asked her to write notes (I know...you can take the girl out of social work blah blah)

    I mention the time only because fatigue is usually greatest for me p.m....add to that no sleep....gives you a picture of how I was feeling.

    She asked me a lot about respiratory support I've had so far....lots of talking for me..with my barely decipherable voice (which my daughter still mainly understands)

    So then for the 1st time since diagnosis someone measured my cough strength!!! Using a hand held gadget with a mask at one end that I coughed into. I say cough my pathetic attempt (x3) could barely be called a cough and only registered 100. Which is the lowest score. Physio advised this flags up a need for a cough assist...she will liaise with hospital respiratory team.👍🏻

    Next she says she's brought a rollator for me...produces from her car....not what I was expecting...I'd call it a walking frame with 2 wheels. By now my fatigue feels overwhelming...& I tell her really I need a rest on my bed with NIV.

    She suggests walk with frame to my bedroom...try it out. Then I can use NIV. Off I go....gasping like a fish out of water. Make it to my bed and the refuge of NIV.

    Physio suggests various exercises that can support/aid coughing using the NIV machine...wow who knew....so a big tick for my learning. Three exercises including breath stacking using NIV...ending on a cough. For this you do need to be able to remove the NIV mask so if hand function doesnt allow then carer assistance. (When I have her instructions I'll add more specifics about exercises).👍🏻

    We practice the excercises....me on the bed NIV on.....Physio kneeling next to the bed daughter taking notes....get the picture?

    Ok so she's gone through the necessary but added would I mind if she just took my vitals before she goes...blood pressure...temperature.... blood oxygen levels. She notes my breathing is looking laboured.

    This was where the fun began....BP is very high....she checks x3....according to her chart she has to inform my GP as coupled with breathlessness I'm high risk. I said fine. Funnily enough at this time I'm feeling somewhat amused as my dread of dying with MND might be trumped with a massive heart attack....sorry just saw the funny side of it.

    Anyway she speaks to GP comes back to me and says he has given two plans
    1. Admit me now to hospital
    2. He will visit and prescribe antibiotics

    My reply (2 thumbs down gesture) no to hospital...definately! 2nd point antibiotics for what?

    GP says he wants to come & visit anyway...well in my area a GP home visit is a rare thing...so I agree.

    Physio leaves....worried but happy knowing GP is coming. Daughter keeps looking at me with dread....poor girl.

    So true to his word GP arrives. Listens to my chest....clear. Retake blood oxygen 97 so good. BP still elevated but improving. He feels that monitoring BP would be useful.....I have a machine so agreed I'll keep him informed.ok

    He says he's glad he came and will visit from time to time.👍🏻(ten out of ten for GP)

    I slept well & today BP still slightly elevated....I'm ok. I've a feeling I may need some antihypertensive meds....we'll see. Anyway of course as well as MND we'll always have other health issues too.


    Good news is community & hospital respiratory teams working more closely going forward.

    🙏😇



    ​​​








    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.​​​​​​

    #2
    Wow. Sounds like some positives came out of those visits. It’s nice to hear stories where the health care team gets it right.
    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

    Comment


      #3
      A very thorough examination and hopefully a better multi team approach for you. Hope you get some well earned rest xxx
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Oh Linda, what a stressful time that was (still is?), scary too - yup, we can die from other things too 😏 and thankfully the Grim Reaper couldn't climb up your stairs yesterday 🤗🤗

        Would you not be better wearing a 24hr BP monitor and see if spikes can be correlated to activity, off-NIV, eating etc?

        Notwithstanding access issues, is your place suitable for an erergy saving powerchair?

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

        Comment


          #5
          LindaB - sounds like a pretty intense experience but good to hear you got the care and attention needed. I hope you are feeling more rested.

          My powerchair has enabled me to have so much more energy, maybe an option for you?
          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


            #6
            Hi Linda. Wow, I’m exhausted just reading about all you’ve just been through. Excellent and informative write up though, thank you.

            I wonder how many people having read this find the only thing they are thinking now is

            …”she got a visit from a GP!!”

            Hope some of those interventions improve things for you.

            Comment


              #7
              Thanks guys🙏😘💙

              Ellie yes the grim reaper couldn't face the stairs without oxygen....😂...I truly did think maybe a heart attack was a better alternative ending...searing chest pain then you're gone...apologies for dark humour.👿

              Funnily enough in 2019 I underwent a battery of tests with cardiology...24hr tape...stress risk assessment all the usual...ending with the consultant advising my GP if my BP becomes consistently high to consider antihypertensive medications...at the time no one unduly concerned about my occasional high BP. I'll record over next few days & see what GP thinks.

              I think my flat might be ok for a power chair (moving furniture) depending on dimensions. Only difficult room would be the bathroom...no turning space...could go in and reverse back out I suppose. I'll mention it asap.
              ​​​​​​
              Love you more💙😘


              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.​​​​​​

              Comment


                #8
                Originally posted by Tony View Post

                I wonder how many people having read this find the only thing they are thinking now is

                …”she got a visit from a GP!!
                I know right....rare as hens' teeth...fair play to him...sadly not the norm as GPs in my view under so much pressure. 💙😒
                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.​​​​​​

                Comment


                  #9
                  LindaB - even if you can't access everything in the powerchair, I have found avoiding most of my walking has made a massive difference to my energy levels. I do have to get out and walk into the downstairs loo, but as it is so small I can use the walls and sink for support 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


                    #10
                    TinyLady same as my bathroom I can use walls and sink for support....it's really ' compact' 😘
                    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.​​​​​​

                    Comment


                      #11
                      Wow Linda. That is a lot to go through. Glad your daughter was there. Here is hoping you get the support you need x
                      Diagnosed 3rd November 2021 Bulbar Onset

                      Comment


                        #12
                        I agree with tiny lady. I started using my power chair inside and I find it to be a positive thing.

                        I've a tdx sp2 and it turns on its base brilliantly. But like you I have not got a huge bathroom so whilst I can still weight bear I hold onto sink lol.

                        Could you hire one for a trial run?

                        X
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          shelly21 thanks for that will look into it😘
                          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.​​​​​​

                          Comment


                            #14
                            To me, it sounds like the chickie who tested your cough didn’t help with your blood pressure! It sounded like she needed to go easier, especially when you said you needed to rest and she insisted on using the rollator! And why the 2 wheel rollator? There is no way I could lift a rollator to walk, my arms are getting so weak…
                            I hope you’re having a more restful time and the breathing improves. 💕💕

                            Comment


                              #15
                              AngieCanuck I'm certainly resting today...thank you😘
                              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.​​​​​​

                              Comment

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