Primary Progressive Aphasia

[chick1962]

I don't suppose it makes much difference to the treatment for dementia. Do you know anything about Quetiapine. I am are about to start my husband on this antipsychotic and am worried it might make things worse. Just got him settled on Mirtazapine and lorazapam and now because of the voices and his unrest and pacing to 'do as he's told', which can lead to him get really angry with me, the doctors want to try this. Trouble is this last 2 weeks he seems much calmer. Still doing the same things but not so worked up. Will I make things worse will these tablets. Don't know what to do. xx

Morning casbow , hubs isn't on any antipsychotics so can't really advise . I am sure there will be someone along who has experience with those. It's a tough one as everybody reacts so differently to meds . Hugs to you xxxx


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[chick1962]

Ps might be good to discuss them with GP or mental health consultant ? Xx


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[Casbow]

chick1962

Not sure Casbow , my husband has same problems as yours . Word finding is difficult so is writing and reading . The consultant said he has problems with the executive function too like he understands a command but when he tries to execute it he can't always. They have diagnosed him with early onset of Alzheimer's and Vascular Dementia. Maybe there are shared difficulties in all forms of dementia ?! John had all the scans too and the 3 hour tests xxx


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I wrote to you a little while ago and it disappeared! So here goes again. I said that I don't suppose there is a different treatment if they have aphrasia anyway. So then I asked if you new anything abouty Quetiapine. It is an antipsychotic that my husband has been prescribed, but I am wondering if its the right thing to do. This last two weeks he has been calmer and less angry. And I worry about the effects of actually getting him settled on it. It took weeks for him to settle with mirtazapine but since then it has been really successful.Do you know anyone that has tried Quetiapine.? xx

 

[Spamar]

Hi Casbow, my OH had quentiapine, briefly, prescribed to lessen the delusions and hallucinations he was suffering from. It worked, but at a very high dose which caused/coincided with lots of TIAs. It was replaced by memantine , which suited him.
He had Alzheimer's and vascular dementia.

BTW he took his donepezil in the mornings and slept very well.

 

[chick1962]

I wrote to you a little while ago and it disappeared! So here goes again. I said that I don't suppose there is a different treatment if they have aphrasia anyway. So then I asked if you new anything abouty Quetiapine. It is an antipsychotic that my husband has been prescribed, but I am wondering if its the right thing to do. This last two weeks he has been calmer and less angry. And I worry about the effects of actually getting him settled on it. It took weeks for him to settle with mirtazapine but since then it has been really successful.Do you know anyone that has tried Quetiapine.? xx

Hello casbow I did see your post bless and answered above hugs xxx


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[San 'Fairy' Ann]

Hi
Has anyone else's loved one been diagnosed with PPA please ?
Hubby has just been diagnosed and it would be interesting to chat to others with experience of this type of Dementia

Hello grannyannie I was diagnosed with primary progressive aphasia 4 years ago. There are 3variants and mine is the logopenic. I have only posted here a couple of times because I seem to be alone with my diagnosis and lots of things are different so mostly I just browse. Im not sure if I can help you but am very happy to try. I am quite isolated as the condition is rare and I have not met anyone else with it and neither has my Alzheimer support lady.

 

[Trisha4]

My husband's problems started with aphasia before any other problem; aphasia is still one of th main issues. We are assured the aphasia is caused by Alzheimer's.


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[chick1962]

My husband's problems started with aphasia before any other problem; aphasia is still one of th main issues. We are assured the aphasia is caused by Alzheimer's.


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Hi , that's what we were told too xxx


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[canary]

You can get atypical Alzheimers which gives very, very similar symptoms to FTD or Primary Progressive Aphasia. It starts in the frontal/temporal lobes like FTD and PPA but its just caused by a different thing.
My husband has been diagnosed with either FTD or atypical Alzheimers - they are just trying to work out which it is.

 

[Trisha4]

For Mick it was atypical Alzheimer's or PPA at the beginning, then Alzheimer's diagnosed.


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[DomC]

Hi Dom
I have never been present when the actual tests are done so I can't explain those. I think our first (and subsequent appointments) start with both of us having a consultation with Dr Anna Richardson, with her asking us both questions. She told us she will not give information but she will answer questions. Mick has never wanted to know anything about the progress of the disease so has asked nothing. I asked some quite hard questions last time and received some quite hard answers, but not in Mick's presence.
He then goes off with someone else and goes through verbal tests appropriate to the stage he is at.
The team then meets some time after and a report is sent to our GP. We meet with our GP after the report has been sent.
It was Dr Richardson who prescribed the Donepezil hydrochloride although it was provided through the GP.
Hope that's helpful and that your visit goes well. Let me know x



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Thanks Trisha
Gill has an appointment tomorrow (Wed 25th) so I'll let you know. Her sister was diagnosed in her mid 50's and is now in a home (and there is a lot of AZ in her family) so Gill is aware of what is potentially in front of her and I am amazed at how calm and accepting she is! I'm just about holding it together but she is so brave and is worried more about how I'm feeling!!

 

[Trisha4]

Hi Dom, do let me know how you get on. Dr Richardson keeps a box of tissues at hand as we all struggle to hold it together at times. Positive thoughts from me go with you tomorrow.


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[aquilaboy]

semantic dementia

I don't suppose it makes much difference to the treatment for dementia. Do you know anything about Quetiapine. I am are about to start my husband on this antipsychotic and am worried it might make things worse. Just got him settled on Mirtazapine and lorazapam and now because of the voices and his unrest and pacing to 'do as he's told', which can lead to him get really angry with me, the doctors want to try this. Trouble is this last 2 weeks he seems much calmer. Still doing the same things but not so worked up. Will I make things worse will these tablets. Don't know what to do. xx

Hi Casbow

On the question of Quetiapine, my wife (67) who has had semantic dementia for 10 years now, has been taking the drug for 2 years now. She takes 125mg each day and it has made a difference. Whether it's the drug or natural progression of the disease I don't know! She still steals if I take her near any sort of shop that sells sweets but she is now much less unmanageable (shouting/complaining/ etc in public) She is unable to read/write/hold a conversation/understand what is being said or manage anything for day-to-day living.The doctors don't really know much about this condition and consequently offer no real help. Her health is excellent - it's just the mind!

 

[Linken]

Ppa

Hi
Has anyone else's loved one been diagnosed with PPA please ?
Hubby has just been diagnosed and it would be interesting to chat to others with experience of this type of Dementia

My husband has Fronto Temporal Dementia, one of the rarer dementias. I discovered a support group at the National Neurological Hospital in London. They do a lot of research and also have a support group for PPA. Their next meeting is 3 December, probably too far for you to come. I suggest you contact Jill Walton (unfortunately Talking Point does not allow me to give you her email address) but you could Google UCL dementia support groups and find newsletters and contact details.
She is the nurse advisor / co-ordinator and very kind and helpful.

Best wishes

Linken

 

[Cat27]

Is this the group Linken?

https://www.ucl.ac.uk/drc/support-groups/PPA-support-group

 

[Linken]

Ppa

Is this the group Linken?


Yes, that's the group.

Linken

 

[glasgowrose]

PPA Support group in London this week

Hi I've been to one support meeting for PPA at UCL and it was helpful. The next meeting is this week as it happens, 3 December 11-2 - Jill Walton as mentioned earlier, is the contact. Hope this is helpful - sorry it's short notice!

 

[Casbow]

Quetiapine

Hi Casbow

On the question of Quetiapine, my wife (67) who has had semantic dementia for 10 years now, has been taking the drug for 2 years now. She takes 125mg each day and it has made a difference. Whether it's the drug or natural progression of the disease I don't know! She still steals if I take her near any sort of shop that sells sweets but she is now much less unmanageable (shouting/complaining/ etc in public) She is unable to read/write/hold a conversation/understand what is being said or manage anything for day-to-day living.The doctors don't really know much about this condition and consequently offer no real help. Her health is excellent - it's just the mind!

Thankyou aquilaboy. We are nearly two weeks into the tablet now and the results have been very quick. After 3 days there was a marked difference and he was much calmer even though he was in and out all the time and shuffling magazines and books all day he seemed much more settled in his head. Now another week on it seems the voices are still there but they are also calmer and not nasty to him. And he has not once got cross with me. So onwards and upwards I hope. For a time anyway.xxx

 

[DomC]

Hi Dom, do let me know how you get on. Dr Richardson keeps a box of tissues at hand as we all struggle to hold it together at times. Positive thoughts from me go with you tomorrow.


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Hi Trisha
Gill was seen by Dr Brown and his team. She was taken for numerous tests whilst I spoke to the Dr and gave some background info. We were not told anything at the time but have now had a further appointment through for 16th Dec to discuss the test results. They asked me to get some family history from Gill's side as there is a history of AZ on her mothers side. I contacted Gill's brother in law as her sister Ann (64) is currently in a home in Wales. I knew a few details about Ann's illness but when Pete described the initial symptoms he could have been talking about Gill, it was a bit of a shock as I thought Ann had developed memory issues first but it turns out she had the same speech problems that Gill is now experiencing! We now just have to wait until 16th to find out what they say.

 

[Chuggalug]

Thank you Chuggalug
My daughter found the website you mention and it was like reading my Hubby's symptoms and ticking them off one by one
I am so lucky that my Hubby is a lovely kind man and we are still able to enjoy being together taking things one day at a time

Glad that helped, GrannieAnnie. It's been some time since I read your thread. Will catch up, now, xxxxxxxxxxxxxx