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Frontotemporal Dementia (FTD) and MND

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  • denise
    replied
    i have a diary sitting there doing nothing. i started this year with great intentions of keeping notes but i felt it to be rather depressing. i shall do as you say. i know what you mean though the doctor asks a question and suddenly i am panicked into an answer and then i am horrified when i realise when he suffered his first fall because i can relate it to an event. why i cant recall this event in the hospital but i can when i return home. stephen had ct scans and the doctor was concerned that it was on his neck and not his head. i do not understand the difference but he said this was the worst of the two options. he didn't explain but said he was going to hopefully get us a mri scan when there's a cancellation. that was sometime ago. when i told our kids that there was something wrong with their father i think they thought i was just being nasty and i was worried the doctor would think the same as you that we needed marriage guidance and not a doctor. and now we are here. stephen is having a feeding tube fitted soon. he can still eat but i gather its better to do it now rather than later. what other horrors are awaiting us? yesterday we had a lovely day. we sat by the river and had a picnic. for once he sat still and enjoyed it. this rarely happens. hes very keen to move on. i never get a chance to relax with him. i end up getting upset and it ruins the whole moment. this was the best day in a long while. i am thinking of you and dave. hugs to you both. xx

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  • Gilamon
    replied
    Hi Denise
    I'm sorry that you have to be here. I suggest that you start a diary of the behaviours that you're experiencing. As Naomi has said it's so useful to be able to look back on and in a consultation the professionals like to have examples. It's amazing how your mind can go blank at the most crucial times. In many ways as Dave changed, I adapted and after a while it becomes so difficult to analyse what normality is. I had to drag Dave to our first GP visit and I was worried that it may seem more like a marriage guidance session. However the GP clearly had concerns and we were referred to Mental Health. It wasn't the right place but at least we then had a CT scan. We were 'lucky' as the CT scan showed what I'd thought but I believe that scans don't always show any change for quite a while and so diagnosis can take time.
    Thinking of you
    Gill

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  • denise
    replied
    Hi sue
    thank you sue for the link to the rare diseases link. I am even more sure that my husbaand is suffering from this dementia/mnd. he did have a ct scan and was supposed to have a Mri scan but its a case of waiting for an appointment. his behaviour has changed he isnt violent but gets annoyed and upset. i know a lot of these things are understandable but when you have been married for 37 years you know when things are wrong. i find it hard sometimes to communicate with him like he is distracted. another time i can be talking to him and he completely changes the subject and i am not sure he has even been listening.. i am glad it isnt just me thinking that there is something wrong now i know and shall have no problems bring this up with the doctor. thank you so much for your help. please stay in touch and anyone else out there. xxx
    denise

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  • Gilamon
    replied
    Thanks Naomi I'm sorry for the delay in replying. Dave's developed gout which I can only think is due to his drooling saliva and not replenishing sufficient fluids. I don't know if anyone else has experienced this?
    We've had great support from our speech therapist. Dave's now on thickened drinks and completely smooth food. His dementia is impacting what he is willing or able to eat. He finds pureed food too thick and needs this thinned which seems illogical and the speech therapist is 'following Dave's lead'. It's a fine line we walk. We had a PEG assessment on Friday and although Dave doesn't want it, I know a nasal tube can be fitted quite quickly if necessary. To be honest I think he should have this now, but I can't justify forcing this decision.
    We have a comprehensive communication book the speech therapist helped create, which covers many possible scenarios. However as Dave is able to write still, this is his preference. It's a bit cryptic as he doesn't know the words he needs and spelling is erratic so thank you; I need to get using the communication book so we're more proficient. We've also been given the Predictable speech text app on Dave's tablet by the MND Association following a request from the speech therapist.
    The neurologist is sufficiently confident that it is MND and has specified ALS. I suspect bulbar onset ALS but further testing is needed to formally discount any other possible condition. So I'm not too concerned about receiving the diagnosis and there is a lot of info online.
    Over the last few years I've been writing down examples of vocabulary loss or odd behaviour prior to diagnosis. It is cathartic and writing gives me an opportunity to weep a little. I'm very reflective and tend to think probably too much. However since deterioration seems to be moving quicker physically rather than mentally, I've not written much recently. I'll update it!

    So yes we've had great support from the dementia team and the MNDA have helped us. There's a lot of online support and information too. I've found lockdown quite helpful as I've been lucky enough to step away from work for a while.
    Personally I've lived with a strange unexplainable situation for a few years. Family and friends have been great. Now everything is slotting into place and I feel stronger and better able to cope. So I'm in a good place and feel bizarrely lucky as I know things could be worse. It's just very sad.

    Thank you for your suggestions. It's so easy to forget things and then it's too late.
    Take care xx

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  • Nomes
    replied
    Evening Gill

    Mum was 75, and other than Crones disease also fit and healthy, so it was a shock for both of us when things starting going wrong! I'm not sure about the influence of age, but I think whether the symptoms start top down or bottom up has an influence.

    Have you had much involvement from the speech and language therapy team? I found them helpful with assessing swallow, advice on diet (things like bite size softer foods, eventually moving to puree) and thickner for drinks to give mums swallow extra time to kick in.

    One of things I'd try sooner in hindsight is picture books for communication, but by the time the writing was sliding the dementia had too much of a hold for mum to work out how to use one- though given what you say about Dave's struggle with words I'm not sure if you'd find the same thing

    Ellie had suggested the local network for contacts, I also found the literature available from the MND association really helpful, if you havent already there's lots you can be sent (I'm still a fan of something tangible to scribble on/bookmark/go back to!): https://www.mndassociation.org/suppo...fected-by-mnd/

    If you still havent had a formal diagnosis, all the things you are noticing will help, and could also help the doctors understand outlook based on historical progression. It might help to write them down with dates if you're not already. I found a little bit of catharsis doing it, and it was helpful to look back on when I was having bad days to try to remind myself that we were dealing with so much change that being overwhelmed by it sometimes wasnt a failing. Knowing mums views and feelings on things from conversations over the years, I was relieved for her, but that was a hard one to square off for me!!

    How have you been coping with lockdown, have you got support for you?

    Naomi x

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  • Gilamon
    replied
    I'm sorry Naomi Your mum's illness was very quick. I hope you're ok.
    Her progression sounds similar to Dave. His speech changed last summer too and now he's unable to speak. Written communication is ok although his semantic dementia means he has lost vocabulary and doesn't know many standard words. So I'm unsure how long we'll be able to communicate.
    Swallowing is extremely difficult now and he's due for a PEG assessment soon. Even this last week I can see he has deteriorated.
    Can I ask how old your mum was? I'm not sure if this makes any difference, but Dave is 59 and was physically fit up to this last few months.
    In many ways I'm hoping that the MND acts fairly fast rather than the FTD taking hold for years ahead. However none of it is easy and each day brings a new challenge.
    Thank you for your help xx

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  • Nomes
    replied
    Originally posted by Ellie View Post
    Hi Nomes and welcome to the Forum.

    Sorry to hear of your late mum's diagnoses - admirable of you to offer to share your knowledge and experience, thank you.

    Love Ellie.
    Hi Ellie,

    Thank you for the shout, from the threads I've looked through the forum seems to a really warm, friendly and welcoming place!

    Take care x

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  • Nomes
    replied
    Hi Sue and Gill,

    I dont mind you asking anything at all, nothing is off the table for me

    I first noticed something was slightly adrift with mums speech at the end of June '19 (she just sounded 'different', nothing I could put my finger on), over the next couple of months her ability to talk deteriorated and little behaviour changes followed, it was something new on a week on week basis. We had a frustrating time with doctors and it was a battle to get her seen by a neurologist, but by August they were thinking it could be FTD primary progressive aphasia.

    By about september speech was really hard but we were managing with written communication, come October the written comms were failing (lots of repetition of a few words, known as perseveration, and very jumbled sentences) and there were more dementia symptoms but she also started to have falls and problems swallowing.

    I kept a note of all the changes that came on a weekly (and sometimes daily!) basis and kept calling the neuro to update her. Because of the unusual speed of change the neuro referred her to a specialist professor and he arranged some tests which she had mid November. I'm not sure if they saw something about her that sparked alarm bells or whether the additional tests were standard, but they also did nerve conduction tests. It was from that the FTD MND diagnosis came, and given how fast it had moved she was given about 3 months. Mum was in hospital at this point (she was also having severe problems with her crones disease, just to add insult to injury!) and she moved from hospital to a care home because of the speed of things to come.

    From there on the MND symptoms ramped up, with mobility getting harder and increasing problems with her swallow. Because of the dementia and associated speech issues it was really tricky to understand quite what was going on for her, and how much was dementia vs MND, something you sound like you're experiencing too- its bloody hard isnt it, theres no manual for this and I constantly felt like I was flailing around in the dark, second guessing if was doing the right thing on her behalf and beating myself up with the power of hindsight!

    But whichever it was, from January she increasingly lost mobility and ability to swallow, and got a chest infection which was the beginning of the end. Always a woman to be early for everything she passed away peacefully a week short of 3 months from diagnosis.

    Hopefully all this isn't too much information, sincere apologies if it is. im led to understand that the speed of progression for her was, whilst not unheard of, quite unusual.

    If theres anything in all of that you'd like me to expand on please do just ask

    Take care x

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  • Gilamon
    replied
    Thank you Naomi.
    It's very kind to offer your support. I'm sorry to hear of your mum's diagnoses and rapid decline. It must have been a difficult time for you.
    The more I'm learning about each condition I'm realising how different each individual progresses. Like Sue, I think Dave initially showed more FTD symptoms but I'm beginning to think the MND is taking more of a hold.
    Swallowing and communication is a big difficulty for us. I haven't had much input from MND medical professionals as a definitive diagnosis hasn't been made yet so there is a whole new learning curve to cope with.
    Thank you for being here
    Gill xx

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  • Sue1
    replied
    Hello Naomi,

    Thank you very much for your reply. Im so sorry to hear about your mum. Especially to hear that her journey was so rapid and short.

    Do you mind me asking how far her MND progressed. I ask this because at the moment my husband Mark's symptoms are mainly coming from the FTD i believe, although of course his slowness and eating issues could be from either disease. He is still able to walk, albeit slowly, but no longer talks much at all.

    Was it a long time before she was diagnosed as this is often what I hear.

    Thank you again Naomi.
    Take care
    Sue x

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  • Ellie
    replied
    Hi Nomes and welcome to the Forum.

    Sorry to hear of your late mum's diagnoses - admirable of you to offer to share your knowledge and experience, thank you.

    Love Ellie.

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  • Nomes
    replied
    Hi Sue and Gill

    So sorry about your husbands diagnosis, it must have been a devastating blow for you both in different ways.

    My mum also had FTD/MND, so nope, you're definitely not alone x the big thing I learned is the journey is different for everyone, timing is different and A isnt followed by B, and C, and so on which can make it a bit tricky to navigate. Mums journey was a rapid and short one, so there were a lot of things I learned too late, but more than happy to share anything that could help.

    Take care....of you as well,
    Naomi x

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  • Gilamon
    replied
    Hi Sue
    I'll PM you!
    Thanks Gill

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  • Sue1
    replied
    We’ve never been told which type of FTD really because it all came as part of the MND. That said we think it’s behavioural.

    Mark got his diagnosis last year. What hospital are you under? We are at queens square neurological hospital.

    Xx

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  • Gilamon
    replied
    So far we've had a physical assessment with the neurologist and observations from other professionals. He's had blood tests too. Lockdown had prevented the EMG and an MRI. Dave had a CT scan in June last year which stated he had atrophy in line with PPA Primary Progressive Aphasia (semantic dementia is one branch of this) but wasn't officially diagnosed until December. Since about August last year, his speech changed and he has found it increasingly difficult to manipulate his tongue. Eating and swallowing were problematic and the speech therapist who started with us in January noticed fasciculation in his tongue. Now he has fasciculaions in his arms and right leg. He can't speak clearly at all but still tries.
    What type of FTD does Mark have? When was he diagnosed?
    Hoping you're ok xx

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