So many questions …..

[David1963]

My wife (60 years old) has been given a most probable diagnosis of FTD with MND, genetic testing ongoing but not expectant of any material change in diagnosis. If I think back I can recall minor issues with incorrect words and difficulty understanding the spoken word as far back as 2013 which the neurologist found strange ( that the FTD element goes back that long ). Have had my concerns for some years that something wasn’t right but culminating early 2021 when I noticed her speech just wasn’t quite right which has now progressed significantly. Speech still possible but very short or one word with pronunciation quite poor now. Some isolated choking incidents. Control of her tongue etc seems very difficult now.
Neurologist gave most probable diagnosis Dec 21 .

So many questions but difficult to ask when my wife is present as she remains in a level of denial.

Appreciate advice on those who have been here before me on what I should be doing / thinking about to prepare myself for what is probably ahead.

Trying to understand where we are from a timeline perspective in terms of progression and prognosis.

[matthew55]

Sad to say but no one on here is qualified to give you the answers. Denial is common to all of us.

[shelly21]

Hi David. Sorry you have had to join us but a warm welcome.

It sounds its made harder re your wife's denial but maybe she needs a bit longer for her to process it all.

Unfortunately we all progress at different rates. Some slow progression others a bit faster.

You mention frontemporal dementia as in ftd. I have no experience of that but other members have.

I was diagnosed last may with bulbar onset ALS and i had been slurring my words for 2years prior.

The first few months can be hectic with many medical departments appointments that maybe involved with your wife's care.

Get yourself a notebook and you can then get contact details etc of each appointment you go to.

There is the obvious issue that most are faced with re your home and if you feel its suitable for any adaptions you may need.

But you do get help from occupational therapist re this.

Maybe use the forum to search the bits you want to find more info on and don't forget mnd connect are a great help.

Re voice. There is voice banking available and speech assist apps on mobile phones but again speech and language therapists should be one of the big appointments that will help.

[Ellie]

A warm welcome to the forum family David1963 and so sorry for your wife's FTD-MND probable diagnosis, it's a tough one for sure.

If I think back I can recall minor issues with incorrect words and difficulty understanding the spoken word as far back as 2013 which the neurologist found strange

That does happen - low level cognitive and/or behavioural issues for several years then, with the onset of those ALS interrelated symptoms, the FTD symptoms, which have been insidiously creeping in, combine to give the Eureka moment.

So many questions but difficult to ask when my wife is present as she remains in a level of denial.

The FTD might explain some degree of denial but it's not unusual to delay or shun acknowledging the diagnosis - there's no right way, nor wrong way, to deal with the diagnosis.

Trying to understand where we are from a timeline perspective in terms of progression and prognosis.

That's a difficult question to answer: the FTD symptoms may be more dominant in your wife or maybe the MND will be and, hard as it is to 'guess' at anybody's prognosis, the FTD complicates the issue.

There are a few other forum members whose partners have FTD-MND.

Has your wife an upcoming Clinic appointment or has she already met with an SLT re her speech and swallowing difficulties?

Love Ellie.

[LindaB]

David1963 sorry to hear of your wife's diagnosis. Welcome to the forum where as you'll already realise there's lots of valuable advice.

Take care & keep posting. We're a friendly bunch....👍🏻

[David1963]

Ongoing appointments in Feb are,

- Speech therapist

- genetic testing ongoing

- review with neurologist