Primary Progressive Aphasia

[grannyannie]

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

 

[Chuggalug]

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

Never heard of this one, grannyannie. Bump it in case somebody else has. I'll see if I can find anything online.

UPDATE: Loads of info via Google. "Aphasia” is a general term used to refer to deficits in language functions. PPA is caused by degeneration in the parts of the brain that are responsible for speech and language." That comes from this link: http://brain.northwestern.edu/dementia/ppa/

Really hope someone can help you out further.

 

[Optomistic]

My husband has early onset Alzheimers and Aphasia the reason we went to the doctors was because he couldnt get his words out. He knew what he wanted to say but couldnt say it. They did a scan and lots of other tests and said he had Alzheimers the frontal lobe type. He has been on Aricept for 4 months and his speech has improved a lot the memory is still bad sometimes.

 

[grannyannie]

Ppa

My husband has early onset Alzheimers and Aphasia the reason we went to the doctors was because he couldnt get his words out. He knew what he wanted to say but couldnt say it. They did a scan and lots of other tests and said he had Alzheimers the frontal lobe type. He has been on Aricept for 4 months and his speech has improved a lot the memory is still bad sometimes.

Hi Optimistic
We have been told Hubby has this rarer diagnosis but not Alzheimer's
He has problems with reading writing, speaking and Understanding words, Often he will say the opposite of what he means which does leave people puzzles as " he doesn't look that ill "
Hubby started on Aricept last Thursday but woke up @ 3am terrified. He got out of bed and turned the light on and stood looking at me trying to work out who I was. After I talked to him for a few minutes he recognised me but couldn't remember my name. it took me over an hour to calm him down enough to sleep.
I phoned his wonderful Consultant and he has advised that it is best if he goes back on the Aricept again next Monday when he will be able to be contacted if another reaction occurs.
My problem is he has left it up to me to decide if its best for him. He has another scan due and the medication may change.
Is it best to leave it and start on the correct meds after scan result ?
Hubby is 61 and has had symptoms for 4/5 years , we lost his Mum to Vascular Dementia and Alzheimer's on 28th march 2013.

 

[grannyannie]

Ppa

Never heard of this one, grannyannie. Bump it in case somebody else has. I'll see if I can find anything online.

UPDATE: Loads of info via Google. "Aphasia” is a general term used to refer to deficits in language functions. PPA is caused by degeneration in the parts of the brain that are responsible for speech and language." That comes from this link: http://brain.northwestern.edu/dementia/ppa/

Really hope someone can help you out further.

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

 

[SemanticPPA]

Diagnosis of 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

I am 60 years old and was diagnosed a year ago with Semantic type PPA. My symptoms primarily were related to forgetting names of people, groups, objects etc. I have shown little to no progression thus far. I am followed by a neurologist every 4 months. My diagnosis was revealed through the exhaustive Memory Testing then confirmed by MRI, EEG, carotid ultrasound and laboratory tests. All were found to be negative, thus ruling out any organic disease such as tumor or stroke. I would be interested to hear about your husband. I do not know anyone or have seen anyone with this diagnosis. The literature and studies regarding this disease process holds no answers to how it progresses because all of the patients have such variation. There are 3 variants identified, mine being Semantic variant. This type will progress differently from the other types. Look forward to hearing from you.

 

[grannyannie]

ppa

I am 60 years old and was diagnosed a year ago with Semantic type PPA. My symptoms primarily were related to forgetting names of people, groups, objects etc. I have shown little to no progression thus far. I am followed by a neurologist every 4 months. My diagnosis was revealed through the exhaustive Memory Testing then confirmed by MRI, EEG, carotid ultrasound and laboratory tests. All were found to be negative, thus ruling out any organic disease such as tumor or stroke. I would be interested to hear about your husband. I do not know anyone or have seen anyone with this diagnosis. The literature and studies regarding this disease process holds no answers to how it progresses because all of the patients have such variation. There are 3 variants identified, mine being Semantic variant. This type will progress differently from the other types. Look forward to hearing from you.

Hi
Hubby has to have a working brain scan soon which hopefully will tell us more.
He has had epilepsy scan , MRI , 90 minute memory test etc , His memory is effected as well as his speech. reading , writing and speaking as well as understanding.
He needs to concentrate at one thing at a time.
He sleeps a lot during the day some days then not at all another day.
He seems to be on a fairly even keel , yes good / bad days
He worked as a self employed carpenter but will not work again.
we applied for PIPs benefit back in may and I am classed as his carer.
He is a wonderfully kind affectionate man and I am so lucky to be married to him.
Take care

 

[Trisha4]

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 's initial diagnosis was either PPA or an uncommon Alzheimer's. His problem was aphasia, problems with numbers and he completely lost the ability to write. Further tests resulted in a diagnosis of an uncommon Alzheimer's. He struggles far more with names and words than with memory as such.

 

[grannyannie]

Ppa

My husband 's initial diagnosis was either PPA or an uncommon Alzheimer's. His problem was aphasia, problems with numbers and he completely lost the ability to write. Further tests resulted in a diagnosis of an uncommon Alzheimer's. He struggles far more with names and words than with memory as such.

Hi Trish
My Hubby can remember what happened recently today. yesterday , last week etc unlike his Darling Mum who would ask the same question repeatedly.
She had Vascular Dementia and Alzheimer's.
My Hubby ( Rob ) " read " the letter from the consultant but only recognised the numbers
How long ago did the sign s begin to show in your Husbands case ?

 

[Trisha4]

Mick started about 4 or 5 years ago struggling with names and forgetting simple words although he could describe the purpose eg 'can you put the cup in the .........' ' oh the thing we wash up in' (sink).
When he first went to the GP he was told it was normal in his early 60s. I nagged so he persevered, had some tests and was told it was emotional, nothing wrong. This all took over a year.
More perseverance, he got to a clinical psychologist, who diagnosed aphasia. For various reasons we went privately to a consultant at this stage. Following a brain scan when you could clearly see part of his brain in one front lobe had been replaced by water, the consultant referred him to the Cerebral Function Unit in Salford. The diagnosis of Alzheimer's was made there and he visits there once a year now, apart from that he visits GP. The consultant at CFU prescribed Donepezil hydrochloride.


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[grannyannie]

Ppa

Mick started about 4 or 5 years ago struggling with names and forgetting simple words although he could describe the purpose eg 'can you put the cup in the .........' ' oh the thing we wash up in' (sink).
When he first went to the GP he was told it was normal in his early 60s. I nagged so he persevered, had some tests and was told it was emotional, nothing wrong. This all took over a year.
More perseverance, he got to a clinical psychologist, who diagnosed aphasia. For various reasons we went privately to a consultant at this stage. Following a brain scan when you could clearly see part of his brain in one front lobe had been replaced by water, the consultant referred him to the Cerebral Function Unit in Salford. The diagnosis of Alzheimer's was made there and he visits there once a year now, apart from that he visits GP. The consultant at CFU prescribed Donepezil hydrochloride.


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My Mum in law had vascular dementia and Alzheimer's so we were aware of the signs. and it soon set the alarm bells ringing. At first he was told it was because he was worrying about having it, then depression then Vitamin B12 anaemia both of which he has.
Eventually he was tested and scored 48/100 and things have been moving slowly forward since.
we find " type jobby " to describe something helps at times.
I think we become adept of guessing what they mean or being able to figure it out together.
My Hubby has been on the same meds but had a very bad night so he is having a break from then , back on them tomorrow.
thank you for getting in touch

 

[Jennyc]

Aricept in the morning rather than at night?

When my husband was first prescribed Aricept three years ago, the doctor suggested he take the pill first thing in the morning rather than at night because one of the known side effects was nightmares, and the effect might be lessened by the time he went to bed. He has never had a problem with bad dreams, which may of course just be luck, but it certainly seemed sensible advice. Might be worth trying?

Hi Optimistic
We have been told Hubby has this rarer diagnosis but not Alzheimer's
He has problems with reading writing, speaking and Understanding words, Often he will say the opposite of what he means which does leave people puzzles as " he doesn't look that ill "
Hubby started on Aricept last Thursday but woke up @ 3am terrified. He got out of bed and turned the light on and stood looking at me trying to work out who I was. After I talked to him for a few minutes he recognised me but couldn't remember my name. it took me over an hour to calm him down enough to sleep.
I phoned his wonderful Consultant and he has advised that it is best if he goes back on the Aricept again next Monday when he will be able to be contacted if another reaction occurs.
My problem is he has left it up to me to decide if its best for him. He has another scan due and the medication may change.
Is it best to leave it and start on the correct meds after scan result ?
Hubby is 61 and has had symptoms for 4/5 years , we lost his Mum to Vascular Dementia and Alzheimer's on 28th march 2013.

 

[chick1962]

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 grannyanny, my husband has got aphasia which does indeed mean word finding and language is affected. He struggels with certain words and in conversations he looses his thread and forgets what he wanted to say. Its the same with numbers , he can see our phone number clearly in his head but writes it down wrong. So far he is coping well but understandably he gets frustrated sometimes

 

[DomC]

Mick started about 4 or 5 years ago struggling with names and forgetting simple words although he could describe the purpose eg 'can you put the cup in the .........' ' oh the thing we wash up in' (sink).
When he first went to the GP he was told it was normal in his early 60s. I nagged so he persevered, had some tests and was told it was emotional, nothing wrong. This all took over a year.
More perseverance, he got to a clinical psychologist, who diagnosed aphasia. For various reasons we went privately to a consultant at this stage. Following a brain scan when you could clearly see part of his brain in one front lobe had been replaced by water, the consultant referred him to the Cerebral Function Unit in Salford. The diagnosis of Alzheimer's was made there and he visits there once a year now, apart from that he visits GP. The consultant at CFU prescribed Donepezil hydrochloride.


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Hi Trisha4
My Wife Gill has been referred to the CFU in Salford but we are waiting for an appointment. Gill's main symptoms are to do with her speech and a few behavioural / character changes over the past 12 months. Her MRI scan came back normal and she passed all the memory tests. Can you tell me what tests they do at the CFU? What happened when Mick first went there? Any details would be helpful, thanks.

 

[Hellyg]

My husband had been diagnosed with Frontal Temporal dementia, semantic variant. He struggles with language, in that the meaning of words, he also has some behavioural elements, but not as extreme as the behavioural variant. He also struggles with executive function.

He was diagnosed via a SPECT scan and then neuropsychological testing. Which involved 3 hours of testing. I was not present for these tests, so didn't get to see the details.

 

[Trisha4]

Hi Trisha4
My Wife Gill has been referred to the CFU in Salford but we are waiting for an appointment. Gill's main symptoms are to do with her speech and a few behavioural / character changes over the past 12 months. Her MRI scan came back normal and she passed all the memory tests. Can you tell me what tests they do at the CFU? What happened when Mick first went there? Any details would be helpful, thanks.

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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[Casbow]

Aphasia

I have just been reading all of the comments made by people on this subject. I am worried as I think my husband has lots lof these problems but I just thought it was a normal part of dementia. For example today he could not distinguish between a cup of tea and a bowl of grapes when I asked him to put the tea down whilst he ate the grapes.There are many things like he can't write or tell the time. He can't read more than a couple of words and then doesn't seem to understand what he read. Should I worry.x

 

[chick1962]

I have just been reading all of the comments made by people on this subject. I am worried as I think my husband has lots lof these problems but I just thought it was a normal part of dementia. For example today he could not distinguish between a cup of tea and a bowl of grapes when I asked him to put the tea down whilst he ate the grapes.There are many things like he can't write or tell the time. He can't read more than a couple of words and then doesn't seem to understand what he read. Should I worry.x

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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[CeliaThePoet]

I think for some types of dementia, these present early and dramatically and are a signal of the type. It wouldn't surprise me if it were a common bit of a mid-later phase of most, though. My mother is just starting to have aphasia in stage 6.

 

[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 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