Aphasia diagnosis

[neilyoungismyhero]

My husband was recently diagnosed with this condition.
We've got to the stage where the consultant has advised speech therapy but have heard nothing further.
His speech is getting a lot worse and he now struggles to have a conversation outside of the family circle. He can't speak on the phone without difficulty. He gets incredibly frustrated and angry and has always been a bit of a confrontational character. Cognitively I'm not sure where we are...he is pretty sharp still and continues to work on his motor trade projects. We don't talk about his diagnosis- it's the elephant in the room. I don't know whether he knows how awful the progression will be, he googles so I find it hard to believe he doesn't know but I don't want to say anything in case he is unaware. It's heartbreaking. Does anyone have any experience of the time frame for this illness...when will he have to give up driving? Will it necessarily end up as alzheimer's? I believe it will but also read that people with aphasia can continue to live long and happy lives?? How?
Can anyone give me any further information- I did post previously but didn't really get too much information. It's quite a rare condition I believe. He's always been a 'talker' too much so to be honest and this has hit him hard.

Very sorry to hear this, OP.
I think you are referring to Primary Progressive Aphasia?

(The word aphasia itself refers to language difficulty which can be due to several different conditions.)

I suspect that my Mum has this. I don't know much about it, so I'm hoping someone will come along with more info. Reading up about something on the internet is not the same as hearing personal accounts, if people are willing to share.

Im so sorry . Please make contact with this charity for support. Can i ask what area you are in and if ypu have seen a general neurologist or memory clinic or a specialist PPA Dr?

www.raredementiasupport.org/primary-progressive-aphasia/

Also try and see if you can refer directly to your local speech and language therapy. Or at least have a conversation with their dementia lead or aphasia lead. Unfortunately waiting times for slt are really bad but they should be able to give you a time scale for being seen and can consider private slt if you can?

Thanks for the replies. Yes it is PP Aphasia. Yes we've seen a neurologist and as mentioned she has recommended speech therapy and is referring him but we've been waiting for a memory clinic referral for 18 months so not particularly hopeful about any time soon and unfortunately we aren't in a position to seek private consults.
I was hoping as per a PP said that there would be people who had actual living experience of this condition and what the next steps will be. He seems to get fixated on things for a while too, not sure whether that's common.
The neurologist said that she would also be back in touch with a view to another appointment but we haven't heard any more from her. She has already advised there is no medication or treatment. Part of me feels we're just being left to get on with it by ourselves tbh.

Very sorry you are going through this, OP. Very tough.
I don't have personal experience with this website, but they seem to have a lot of resources.
https://lottie.org/dementia-support/find-a-dementia-support-group-near-you/#find-a-dementia-support-group-near-you
Maybe they could help you find a support group - I think that would be very helpful to you.
Sending compassion.

@Sailawaygirl - I've just had a look at the link thank you.

I would recommend making contact with your local Alzheimer's society group.

They can vary in their level of activity but my parents found the groups & support they offered really helpful. My Dad still goes to some of the groups as a volunteer helper, even though Mum died 18 mths ago.

My mum has PPA. I’m so sorry that your dad has been diagnosed with it.

I’m going to return to this thread properly when I can organise my thoughts best, but I would strongly agree with poster who linked to rare dementia organisation. You need to sign up to their services, but then you’ll be signposted to virtual and in person carer support groups. The calendar on their website is completely empty, so it looks like there’s nothing going on. Don’t let that put you off - sign up and you’ll start to get info.

Do feel free to keep checking back with this thread. It’s so hard when a parent has a rare dementia, as the knowledge base just isn’t there.

My mum has Frontotemporal dementia with PPA and strongly agree re the rare dementia support charity. They are a birlliant source of information and support. Another family member went to an all day seminar they ran on PPA recently. I think something similar would be useful to you. Aparently it was quite focused on early to middle stages which is not relevant to us. Mum has now had it at least 15 years and is 71.

I so wish there was a road map for any kind of dementia. As far as I can tell, and perhaps more so with rare dementias, there is really no way of predicting what comes next or what symptoms anyone will experience and at what stage. I think it can also hugely depend on your age and your physical health.

I can give you a full account of the pathway the condition has taken for us of you would find that helpful? Some of it will be scary and some of it will be really reassuring but none of it will necessarily be relevant to your husband and the next stages for him. Everyone is so different.

My mum's now in the late stages and needs round the clock care, which I moved in to provide. Her speech makes no sense at all but her tone is usually clear and we find ways to comunicate with her. She knows how much she is loved. She doesnt know who we are but she knows we're hers and she is very loving. She has a full life despite the difficulties. She still smiles and laughs

We've also learnt that with every bit of progression (new symptom or existing one becoming less manageable) we can adapt and manage. We find solutions one way or another and make it work. There have been so many moments that felt like disasters but they've become stories that remind us that we can cope with anything!

Do you have family/friends that are supportive? I'd also recommend the Alzheimer's society for support, information and advice. Joining a support group is also valuable for you. The more you put in place now, the more resources you'll have for when you need them. Its also worth getting involved in research, both for you and your husband as it can add to the resources available - I recently did a rare dementia carers research project and it was testing out a whole load of information and resources for carers.

Sorry this is long and I'm not sure I've answered your question. Do post again in this thread and give an update or ask more questions.

Oh, also OP - you may have done this already but please get lasting power of attorney (LPA) sorted asap while he has capacity. The sooner its sorted the better. Even if he remains cognitively okay for a long time its better to have it in place.

Hi @Ankleblisters . I’m not the OP, but glad you’ve posted as it can feel quite lonely when a relative has a rare dementia.

Hi @Pampledample, you're right, and difficulty accessing the right info makes it lonelier! Its hard to summarise all the things I wish we'd been told at the beginning. How is your mum getting on? How long ago was she diagnosed?

OP, re driving, you/your husband are required to report the PPA diagnosis to the DVLA who will then retest your husband regularly to check he is safe to drive.