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    #46
    Hello Jo Jo

    I remember your partner was due to have his first appointment with an OT before Christmas. I hope all went well at the appointment.

    Hopefully he will also be seen by other healthcare professionals (including a speech & language therapist who should be able to assess whether MND is affecting your partner's speech and also provide advice and infomation about speech therapy and voice banking etc).

    There is also some information about speech and communication (including voice banking) on the MNDA's website:-

    http://https://www.mndassociation.org/support-and-information/living-with-mnd/speech-and-communication/

    Love
    Kayleigh

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      #47
      Hi Jo jo

      Originally posted by Jo jo View Post
      How does he bank his voice
      This is quite a good read I think

      https://www.mndassociation.org/profe...voice-banking/
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

      "Things turn out the best for people who make the best of the way things turn out"

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        #48
        He had a flying visit from the OT but she said she will come and see him again on the 7th. I will ask her who else should be involved and when they might come and see him. Just got back from the doctors he says it might just be a virus and have given him antibiotics. Fingers crossed that is all it is.

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          #49
          Hi Jo Jo,

          If it's not viral, your partner should see an SLT - Speech & Language Therapist - either through the MND Clinic or in the Community re voice changes and voice banking.

          The tickle could be swallow, saliva or reflux related and should be assessed.

          Love Ellie.
          ​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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            #50
            Hi everyone hope everyone is coping as best they can. My partner is now using a wheel chair and is loosing strength in his right arm and hand. His neurologist won’t say what MND he has als or pls . There seems to be a massive difference in prognosis. He’s still working but has reduced to part time and I’m working full time but it’s getting so hard to juggle everything and I feel guilty for leaving him at home on his days off. I also find myself getting moody due to being emotionally and physically exhausted. Then feel guilty as I know he must be going through worse than me. If he’s only got months I want to pack in working and spend time with him then worry about the mortgage and bills but if hopefully he’s going to be with me for 10 years plus then I know I have to continue to work for as long as possible. At what stage will they give me some Idea of what is the likely future or don’t they ever tell you.

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              #51
              Hi Jo Jo,

              I'm sorry you're chasing your tail and understand how you are exhausted.

              Tbh, I don't understand why your partner's Neurologist refuses to elaborate as to which form of MND he has, unless your partner himself doesn't want to know??

              OK if the diagnosis is not easily categorised, but the Neuro should still be able to say, "well it's mainly XYZ", or the likes which will give you both some direction of travel (for now, at least) Sometimes a person may have predominantly upper motor neuron involvement (slower form of MND) but it can gradually morph into ALS.

              As has been often said, giving a prognosis to a relatively well person with ALS is very, very difficult - really it's a guesstimate or giving 'averages' in survival rates.

              Hopefully the Neuro will tell your partner his diagnosis without him needing to go through the palaver of getting access to his medical records!

              Is your employer understanding? I don't suppose your partner has Critical Illness Cover or a Life Insurance policy with a terminal illness clause covering MND diagnosis or able to access a pension which could help pay off the mortgage?

              Take care.

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

              Comment


                #52
                We do have terminal illness cover but you have to have 12 months or less to live to be able to claim it and due to the neurologist saying it could be months but could be years they won’t pay it.

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