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    New to forum FTD/MND

    Hi, I have summoned up my nerve to post !
    I am a full time carer for my husband who was diagnosed with FTD/ MND 3 years ago. I have not come across anyone with the same diagnosis and wondered if anyone has had a connection to this rarer form . He has ALS form of MND and has recently lost the use of his hands. It is has been very difficult and upsetting but I know how supportive the forum is. Many thanks for reading!

    #2
    Hello Lilly, well done for joining us. There are so many people here who will help with good advice and humour. Stay Strong 👍x

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      #3
      Welcome Lilly - sorry you've had to join us though but glad that you took the leap and posted 😃

      Yes, unfortunately FTD can sometimes go hand in hand with ALS, to varying degrees.

      Physically, is it 'only' his hands which are affected at this stage?

      I hope you both have good support from your MND Clinic and/or Community Services.

      There are some people here whose partners have FTD along with ALS/MND but they may not be online for a while. Feel free to ask any questions, have a rant or a weep with us.

      Look after yourself too.

      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


        #4
        Hello Lilly,

        Welcome to the forum and I sympathise with your situation. I had a friend I met through the local MNDA branch and he had FTD MND and he would make us laugh at our meetings. His husband would recount the tales of holidays and one story I remember is when his wheelchair got caught up in a ladies skirt. I don’t wish to make light of your situation but we do need to find humour when coping with this disease.

        Best wishes to you and your husband
        Barry
        I’m going to do this even if it kills me!

        Comment


          #5
          Thank you all for your responses.
          Unfortunately Ellie he has half a paralysed diaphragm and uses a NIV every night and has started to use it a-lot more during the day. I think the cooler weather affects his breathing.
          He is usually very happy and as Barry noted ,he can be hilarious at times but the FTD can cause a lot of trouble as he has no filter and says exactly what he sees or what he thinks.
          lack of empathy and being unable to discuss his feelings or planning anything together does not happen anymore.
          I just wondered if other FTD/ MND sufferers struggle to convey if they are in pain ?
          sorry for the long text I must learn to shorten them !
          Lilly

          Comment


            #6
            Originally posted by LillyC View Post
            I just wondered if other FTD/ MND sufferers struggle to convey if they are in pain ?
            I know from previous people on the Forum that, yes, this can really be an issue unfortunately. Sometimes partners and carers learn the cues, some affected people can use picture cards as communication aids, and others played the guessing game.

            Does your husband have regular assessments by the Neuropsychologist in the MND Clinic and/or a Speech and Language Therapist? You really should have support, albeit in-person Clinic visits are somewhat curtailed during these Covid times, video appointments are valuable too.

            I'm sorry you're both going through this.

            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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