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    #16
    Hi Piglet and a warm welcme to the Forum.

    I'm sorry to hear of your husband's MND diagnosis and of his cognitive & behavioual changes. Hopefully Sue will be along soon but, in the meantime, you might find this information sheet useful to read: https://static.mndassociation.org/ap...ay-i-think.pdf

    Does he see a Neuropsychologist at his hospital appointments? If he does, they screen for cognitive and/or behavioural changes and will offer advice. He can also be screened by an MND Nurse or other healthcare professional, on referral from his GP. You could maybe phone his clinic or, if you wanted to just chat to someone, the MND Helpline is staffed by lovely knowlegeable people.

    I'm sure nothing beats talking to someone who has first hand experience, so hopefully you'll get help.

    Take care.

    Love Ellie.
    Last edited by Ellie; 22 April 2020, 21:04.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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      #17
      Thanks for your reply Ellie. Yes we attend the Walton Centre in Liverpool. I did mention about cognitive changes at last appointment and they advised they would refer for Psychology assessment. We were contacted by mental health team nearer to us but it wasn't appropriate as it was assessment for mental health which did not include cognitive testing. To be truthful I don't want another diagnosis alongside MND just wanted a chat really.
      Many Thanks

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        #18
        Hi Peanut, sorry to hear your diagnosis but welcome to this elite club of lovely people.
        I've been under the care of Dr Sidle at Queen Square for 8 years.
        They are an amazing team.
        You are in good hands.

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          #19
          You're right, Piglet, it certainly is not a mental health assessment your husband needs!

          I was thinking maybe you could contact your local MNDA branch who may know of a spouse/partner going through the same as you and would contact you?

          Here is the link to find a local branch:
          https://www.mndassociation.org/suppo...port/branches/

          Take care.

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

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            #20
            Thankyou Ellie.

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              #21
              Hi Piglet, from another scoucer. I know the Walton Centre well. I used to attend pain management appointments (including tests) there many years ago. I didn’t know that they have an MND Clinic. I left Liverpool (for love) in the summer of 2002.

              In my humble opinion the Mental Health Services in Liverpool need improvement. But budgets have been under pressure for years since no recent Governments have been willing to fund these services properly. Two of my adult children are under Liverpool Mental Health Services. I think that it’s called Merseycare nowadays.

              Take care, Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

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                #22
                Hello Piglet,

                Im so sorry I haven't replied sooner.

                Diagnosing FTD can be a tricky thing as the changes in behaviour can be very slight at first and sometimes its only the partner that notices the changes. So many times I have read about other people saying they thought their loved one was having a midlife crisis as their character changes and they often loose empathy or start compulsive behaviour.

                A few classic symptoms are:-
                Increasingly inappropriate social behavior
                Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings
                Lack of judgment and loss of inhibition
                Lack of interest (apathy), which can be mistaken for depression
                Repetitive compulsive behavior, such as tapping, clapping or smacking lips
                Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates

                There is a very useful website which is RareDementiaSupport.Org which offers help and support.

                I had been noticing changes with my husband, Mark, for a couple of years prior to diagnosis, but he had lost his mother to an aggressive brain tumour and I thought it was grief that was causing it. He had always been so caring and took care of me, but sadly that was changing. He too couldnt do our accounts anymore, and he was eating for England!

                Im certainly not an expert Piglet, and I can only tell you what I have learnt on this journey. Please do ask me anyother questions and I will obviously help as much as I can.

                Hello Double D, Mark is also seen by Katie Sidle at Queens Square. She is very caring isn't she, and we do feel looked after.

                Take Care
                Sue x

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                  #23
                  Hi Sue
                  Thanks for your reply. Do you mind me asking when your husband was diagnosed with MND and has he a formal diagnosis of FTD. Is he still at home with you.
                  Wishing you all the best especially at this difficult time
                  Piglet xx

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                    #24
                    Hello Piglet,
                    We had Marks diagnosis at the beginning of last year. It was then that they diagnosed the FTD and MND. Yes, Mark is at home with me. His MND symptoms are not progressing as quickly as his FTD symptoms have. How is your husband doing now?
                    Take care
                    Sue xx

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                      #25
                      Hello Hayls,

                      Im very sorry your dad had FTD. You are right it is very difficult to diagnosis. Ive actually heard several wives say they were just about to divorce their husbands as their behaviour had become so unusual with such a lack of empathy that they thought they didn't love them anymore!

                      With the progression of symptoms I think its sometimes difficult to tell whether the symptoms are coming from MND or FTD, I think they can also overlap.

                      I am so sorry for your diagnosis, and so young. I have only just started posting on here but I am hoping I will find some friends who I can chat things through with, but also I would like to help anyone I can too from the knowledge that I have gained so far. Sadly you learn a lot very quickly about two diseases whether you want too or not!

                      Take care
                      Sue xx

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                        #26
                        Hello Sue1
                        Your so right, whether we want to or not, we learn a lot and we constantly problem solve, never ever forget how amazing you are, your still there by his side and never be afraid to ask for help. Due to our home being too small we couldn’t have the lifting equipment and we had to make the hardest decision and he lived in a home and we could stay with him, they had all the equipment to safely look after him, I look back how lucky we all were, please whatever you do, do what’s right for you, we are all here if you need a chat, sending my biggest rainbow hugs

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                          #27
                          Hi Sue

                          My husband has been diagnosed 3 years this October. His weakness at present is in his arm and hands. He needs assistance from me with his personal care. His breathing is also affected so he uses a breathing machine at night time. He has incongruity at time laughs when not appropriate and his voice can become strained at times but this is due to his breathing which can affect the muscles around the vocal chords. He has some behavioural changes, can be greedy at times but I think it's not as bad as it was. He lacks empathy also at times and understanding but on the whole he's doing ok. He is very pleasant and calm in manner which is a blessing. He is often a little over familiar with people he doesn't even know but they just feel he's being friendly!. He is 69 in July. How's old is your husband if you don't mind me asking.
                          I am aware it could be a lot worse and we tend to live for the day and try not dwell to much on the future.
                          Take care
                          Love Pigley

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                            #28
                            Hello Piglet,
                            Lovely to hear from you. It sounds like you are doing very well all things considered. Did you say that your husband hasn't actually been diagnosed with FTD?

                            I am lucky too as Mark is calm and happy. I think his FTD has taken away any anxiousness or stress for him with his MND diagnosis aswell. Which is a complete blessing for him and me actually. I think he doesn't understand when I have my "tearful" moments and wonders whats wrong!

                            Mark was born in October 1958.

                            Take care and very best wishes
                            Sue xx

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                              #29
                              Hi Sue
                              No my husband Trevor hasn't been formally diagnosed with FTD. It's my awareness of his changes in his behaviour that got me thinking if this was a possibility. I am aware up to 50% of people with MND may experience cognitive changes and a further 5-10% may develop FTD so I'm hoping it stays in the mild categories. I agree with you though that it has taken away Trevor's anxiety about his condition which is definitely a blessing.
                              I'm glad your husband I'd calm and happy as it has a positive impact on ourselves. You too sound up beat so continue being positive and I am here for you on the tearful days as I know how that can be.
                              Many thanks and take care
                              Piglet ( Irene) xx

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                                #30
                                Hello Piglet,
                                Thank you for your kind words. Please keep in touch.
                                Take care Irene.
                                Sue xx

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