Frontotemporal Dementia (FTD) and MND

[Nomes]

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

[Gilamon]

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

[Nomes]

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

[Gilamon]

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

[denise]

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

[Gilamon]

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

[denise]

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

[denise]

I had forgotten about these posts. It seems like a lifetime away. Finally he has the ftd diagnosis. Not sure if that makes any difference as all we/I seem to do is wait for the next appointment.

[matthew55]

Welcome Sue and Gill, apologies for being late to the party. That aside your in the right place for support, advice and, love 👍🙏❤️😁xx