Frontotemporal Dementia (FTD) and MND

[Sue1]

Hello Everyone,

My name is Sue and I care for my husband Mark who has FTD MND. From what I have read I know there is a strong connection between the two conditions, but I don't actually know anyone who has both. It would be really nice to chat to anybody who is in the same position as me and my husband.

We live in Iver, Buckinghamshire and we are under The Neurological Hospital at Queen's Square but also getting help from a team at Amersham Hospital.

Take Care
Sue x

[miranda]

Welcome to our forum Sue. I don’t have any personal experience but hopefully someone will be in touch with some answers for you. On more general matters related to MND please don’t hesitate to ask questions or seek support.

[Sue1]

Thank you Miranda for your reply. Yes,hopefully someone will reply. Surely we can't be the only ones?......

[Ellie]

Hi Sue,

Have you contacted your local MNDA Branch? They might be able to put you in touch with another partner in the same position as you.

If you don't know details of the branch network, the list is here: https://www.mndassociation.org/suppo...port/branches/

You aren't the only one fortunately/unfortunately.

Love Ellie.

[Sue1]

Hello Ellie

I will contact my local branch thank you x

[Gilamon]

Hi Sue
I'm sorry to hear about Mark's situation. My husband Dave was diagnosed last December with semantic dementia and he is likely to also have bulbar onset ALS - we're still in the process of having this diagnosed. I've read a lot more about FTD than MND.
Gill xx

[Sue1]

Hello Gill
Lovely to hear from you but I’m sorry for your news. What tests are Dave having. Mark had an EMG which confirmed his MND diagnosis.

If I can help at all please feel free to message me as much as you like.

What symptoms does Dave have at the moment. Is it the swallowing issues if their looking at bulbar issues?

Take care
Sue x

[Gilamon]

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

[Sue1]

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

[Gilamon]

Hi Sue
I'll PM you!
Thanks Gill

[Nomes]

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

[Ellie]

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.

[Sue1]

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

[Gilamon]

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

[Nomes]

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