Primary Progressive Aphasia

Trisha4

Registered User
Jan 16, 2014
2,440
0
Yorkshire
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.

Thank you Dom for letting me know. I have been thinking about your visit. And again, stay in touch after 16th. My best wishes to you both x


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DomC

Registered User
Jul 16, 2015
22
0
Thank you Dom for letting me know. I have been thinking about your visit. And again, stay in touch after 16th. My best wishes to you both x


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Hi Trisha
Gill had a diagnosis confirmed yesterday of Primary Progressive Aphasia, and although I was expecting it, it was a shock to Gill. One of her first reactions was "don't tell everyone I've got dementia!" I think acceptance may be an issue, which may cause friction as when I spoke to her about contacting the Alzheimer's Society, she forcefully told me "I haven't got Alzheimer's"!
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Hi Dom I am sorry to hear that the diagnosis is now confirmed. It has been 4years since my own diagnosis so I have learned quite a bit about what happens and although we may develope at different rates and symptoms will vary, we are all the same in that we fear the future. Please let me know if I can help you both with anything. I have yet to find anyone else with ppa to talk with and i feel lonely at times. It is a life changing diagnosis and you will probably need time to accept it x
 

DomC

Registered User
Jul 16, 2015
22
0
Hi Dom I am sorry to hear that the diagnosis is now confirmed. It has been 4years since my own diagnosis so I have learned quite a bit about what happens and although we may develope at different rates and symptoms will vary, we are all the same in that we fear the future. Please let me know if I can help you both with anything. I have yet to find anyone else with ppa to talk with and i feel lonely at times. It is a life changing diagnosis and you will probably need time to accept it x

Thanks for the message and I will encourage Gill to get in touch with you. Gill's only real issue is with her speech at the moment, her memory and cognitive abilities are fine. There are slight differences in her character but nothing major. How has your condition developed from the first diagnosis? x
 

blueviolet

Registered User
Mar 1, 2015
19
0
blueviolet

Hi all, I have just read all your comments about PPA. My husband had a car accident 12 years ago this month. The only mark on him was a scratch on the nose from the airbag. We thought he was extremely lucky. 3 months later I noticed he was missing words and becoming forgetful. To cut a very long story short we eventually ended up at the Royal Free Hospital where he was diagnosed with primary progressive aphasia. Nobody seemed to have heard of it and we were told it was a rare dementia. It has been slow and progressive and it was only about 6 years ago that the confusion started, again very slowly but now he has proper dementia and all that goes with it. He still looks as he did 12 years ago and people find it difficult to see anything wrong with him. It is a horrible condition but I expect I was fortunate as at least I have had time to accept - if we ever do accept.
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Hi Dom. I was the same as Gill, just speech and a few personal changes for about two years. My long term memory is not too bad in fact I have started to remember things I haven't thought about for many years. However, my working memory is deteriorating and I am struggling due to this eg I take medication then don't know if I took it just a minute later. I began to write things down and that worked (sort of) for a while but now I forget to write or I write down then don't do what I have written......am I making sense? The progression is slow and so day to day hardly noticeable but looking back the changes are vast. Confusion during the night as I sometimes think I'm in my old house even though we have lived here now for 11yrs. I have lots of things to share but don't want to overwhelm you, it took a year for me to get my head around the diagnosis and even now I feel as if I just need to try harder and will be ok. Did you send a friend request to me? I can't figure out how to accept it but will have another try ☺can you cook? If not may I suggest that you learn the basics whilst Gill can still help to teach you. My husband can't cook and we are struggling really bad now and I have no patience to teach him x
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Hi blueviolet I'm glad to have two people to chat with.......not glad for the reasons obviously as I wouldn't wish on anyone this nightmare! We seem to be in three stages, Gill at the beginning, me 4yrs in and your hubby 12yrs along so a good mix I think. I know I am losing the battle but still keep fighting until I can't any longer it's exhausting tho! We have been making subtle adjustments all along and it's a continuous job to keep re-adjusting and tweeking as the time slips by. Does your hubby talk still? My speech is effortful at best and my husband has become very good at filling in the gaps so we are muddling along. Did they think that the accident was a trigger ? I was told it's called primary because there's no cause but consultants can differ can't they. Talk soon x
 

DomC

Registered User
Jul 16, 2015
22
0
Hi Dom. I was the same as Gill, just speech and a few personal changes for about two years. My long term memory is not too bad in fact I have started to remember things I haven't thought about for many years. However, my working memory is deteriorating and I am struggling due to this eg I take medication then don't know if I took it just a minute later. I began to write things down and that worked (sort of) for a while but now I forget to write or I write down then don't do what I have written......am I making sense? The progression is slow and so day to day hardly noticeable but looking back the changes are vast. Confusion during the night as I sometimes think I'm in my old house even though we have lived here now for 11yrs. I have lots of things to share but don't want to overwhelm you, it took a year for me to get my head around the diagnosis and even now I feel as if I just need to try harder and will be ok. Did you send a friend request to me? I can't figure out how to accept it but will have another try ☺can you cook? If not may I suggest that you learn the basics whilst Gill can still help to teach you. My husband can't cook and we are struggling really bad now and I have no patience to teach him x

Hi
Thanks for the response. Yes I sent a friend request, but don't worry. When I mentioned I'd been speaking to you, Gill wasn't very receptive to contacting you directly but it's early days and I think she may do so at some point. She has said "I will contact her IF my speech gets any worse". I will keep mentioning our conversations to her and I'll let you know what she says. As regards cooking, I do most of the cooking anyway so that's not an issue! Have you had any speech therapy or help from specialists?
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Early days

Hi
My neuro Dr has mentioned speech therapy but I thinks that I won't benefit by it at this point but not sure whether he will suggest it in the future. I have had nothing, zero support from anywhere apart from the Alzheimer lady who does try to get me involved in things that are going on locally. I have tried a couple of the groups but to be honest although I get a warm welcome, I don't fit in. It's totally understandable that Gill isn't ready to chat and maybe she never will be but if she does then I will be here to help for as long as I can be. There is lots of info on line about ppa, I was amazed how much more there is now than when I looked 4yrs ago. I type better than I speak or write although it does take me a lot longer nowadays. I did manage to accept your friend request, you are my first friend on here ☺
 

DomC

Registered User
Jul 16, 2015
22
0
Hi
My neuro Dr has mentioned speech therapy but I thinks that I won't benefit by it at this point but not sure whether he will suggest it in the future. I have had nothing, zero support from anywhere apart from the Alzheimer lady who does try to get me involved in things that are going on locally. I have tried a couple of the groups but to be honest although I get a warm welcome, I don't fit in. It's totally understandable that Gill isn't ready to chat and maybe she never will be but if she does then I will be here to help for as long as I can be. There is lots of info on line about ppa, I was amazed how much more there is now than when I looked 4yrs ago. I type better than I speak or write although it does take me a lot longer nowadays. I did manage to accept your friend request, you are my first friend on here ☺

Happy New Year San Fairy Ann
I hope you had a good Xmas and you are feeling ok? We had a fairly quiet one at home, but went into Manchester on New Years day afternoon with a group of friends which was really good, then back on the train to our local pub to see the new year in. Gill called in at her Office to let them know her diagnosis and she was adamant it was only "A speech thing" but told them it was progressive and she would not get better, so this was an acknowledgement of sorts, but she was making a point to explain that she hasn't got Alzheimer's. (Which I suppose is technically correct!). We are getting there slowly and I know that it will be a slow progression for Gill so I'm thankful for that.
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Happy new year DomC

Happy New Year San Fairy Ann
I hope you had a good Xmas and you are feeling ok? We had a fairly quiet one at home, but went into Manchester on New Years day afternoon with a group of friends which was really good, then back on the train to our local pub to see the new year in. Gill called in at her Office to let them know her diagnosis and she was adamant it was only "A speech thing" but told them it was progressive and she would not get better, so this was an acknowledgement of sorts, but she was making a point to explain that she hasn't got Alzheimer's. (Which I suppose is technically correct!). We are getting there slowly and I know that it will be a slow progression for Gill so I'm thankful for that.

Christmas and new year festivities were lovely thanks Dom. We all went to our eldest son for lunch and tea on the day and then for tea on boxing day too. Just hubby and me at new year as we didn't want to go to the pub and Indian meal after.

Have they told you which variant Gill has? There are 3 and each one is different in that they progress into different forms of dementia. We were told right away which one I have and they said to get financial affairs etc in order.......we still haven't done it but I suppose we will at least have to make a start. We didn't see the need to rush into things because of the slow progression and at the time I thought I'm not changing That much but looking back I can see a huge difference in myself and how others treat me. If she can't relate to any of the symptoms it's unlikely that she will believe the diagnosis. Symptoms are like a conga line, always one jumping in onthe end lol. I hope that the new year brings you some happiness as you set off on the rollercoaster that is ppa. Here if you need me
 

DomC

Registered User
Jul 16, 2015
22
0
Christmas and new year festivities were lovely thanks Dom. We all went to our eldest son for lunch and tea on the day and then for tea on boxing day too. Just hubby and me at new year as we didn't want to go to the pub and Indian meal after.

Have they told you which variant Gill has? There are 3 and each one is different in that they progress into different forms of dementia. We were told right away which one I have and they said to get financial affairs etc in order.......we still haven't done it but I suppose we will at least have to make a start. We didn't see the need to rush into things because of the slow progression and at the time I thought I'm not changing That much but looking back I can see a huge difference in myself and how others treat me. If she can't relate to any of the symptoms it's unlikely that she will believe the diagnosis. Symptoms are like a conga line, always one jumping in onthe end lol. I hope that the new year brings you some happiness as you set off on the rollercoaster that is ppa. Here if you need me

Hi San fairy Ann. I hope you and your family are well? How are things with you? Gill has had her official written confirmation of the Diagnosis as "Progressive non Fluent Aphasia" She is waiting for a referral to a speech therapist in Macclesfield, but I'm guessing it may be a while before she hears anything from them. We have had a lot of information sent from the local Alzheimer's Society but Gill has just put it to one side for now. We have booked a big family holiday for July to Spain which we are both looking forwards to. Do you have anything planned?
 

Whodunnit

Registered User
Feb 9, 2016
1
0
Logopaenic ppa

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.

Hi San 'Fairy' Ann

I joined this forum today and was struck by your words. My husband was diagnosed with Logopaenic ppa about 31/2 yrs ago but he was diagnosed with depression for 4 years before that.
I also have never met anyone with this condition, so maybe we could support each other and I can maybe support the person/ people that support you.

Hope to hear from you

Whodunnit
 

shelagh

Registered User
Sep 28, 2009
476
0
Staffordshire
Aphasia has different causes

I have a diagnosis of Alzheimers complicated by injury to my frontal lobe going back to a severe road accident in the 1980s.I struggle terribly with names and number as well as the memory and spatial awareness problems that come with my Alzheimers
Some of the things that have helped me with the naming problems are making a list when I go anywhere of the names of people I will probably meet, being open about my difficulties and letting other people do the numbers.
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Someone like me

Hi San 'Fairy' Ann

I joined this forum today and was struck by your words. My husband was diagnosed with Logopaenic ppa about 31/2 yrs ago but he was diagnosed with depression for 4 years before that.
I also have never met anyone with this condition, so maybe we could support each other and I can maybe support the person/ people that support you.

Hope to hear from you

Whodunnit

Hi Whodunnit I am excited to connect with someone who may be able to understand the struggles of ppa so thank you for your hand of support. If I can help you in even a small way I will be happy to do so.

Regards from san
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Hi San fairy Ann. I hope you and your family are well? How are things with you? Gill has had her official written confirmation of the Diagnosis as "Progressive non Fluent Aphasia" She is waiting for a referral to a speech therapist in Macclesfield, but I'm guessing it may be a while before she hears anything from them. We have had a lot of information sent from the local Alzheimer's Society but Gill has just put it to one side for now. We have booked a big family holiday for July to Spain which we are both looking forwards to. Do you have anything planned?

Hello Dom, I'm glad that you have a firm diagnosis as you can now make the neccessary arrangements and then get on with your lives. The holiday sounds fun but we haven't got any plans at present. I'm not familiar with the speech therapy stuff as I haven't been to see one yet. Wishing you and Gill many more good days than bad ones. Regards San
 

Harobed

Registered User
Feb 17, 2016
3
0
Pontypool
My Dad has Primary Progressive Aphasia

Hi all
Just to say my dad was diagnosed with ppa in 2009. He was diagnosed with Alzheimer's before this, as it was difficult to realise that it wasn't his memory, but the understanding of words and the difficulty in explaining himself. So ppa was the initial problem, but this has developed into dementia type symptoms. My mum was his carer, but sadly passed away 18 months ago. He has carers in to do his food and to give him mess 3 times a day. He also has support workers to take him out. The main thing is keeping him active, this helps him.
I manage all his care and finances etc, but he is doing ok. I am not sure what stage he is in, but he still washes himself etc, although needs reminding to shower. He does get confused a lot and hides things and has some paranoia at times.
I think he has probably notably had this for 10 years at least, so it is really slow to progress.
Basically the aphasia is the main problem, but can eventually develop into dementia over time.
Hope this helps anyone. It has been a huge learning curve in understanding this as it is rarer than other dementia types.
Hopes this helps.
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
Hi all
Just to say my dad was diagnosed with ppa in 2009. He was diagnosed with Alzheimer's before this, as it was difficult to realise that it wasn't his memory, but the understanding of words and the difficulty in explaining himself. So ppa was the initial problem, but this has developed into dementia type symptoms. My mum was his carer, but sadly passed away 18 months ago. He has carers in to do his food and to give him mess 3 times a day. He also has support workers to take him out. The main thing is keeping him active, this helps him.
I manage all his care and finances etc, but he is doing ok. I am not sure what stage he is in, but he still washes himself etc, although needs reminding to shower. He does get confused a lot and hides things and has some paranoia at times.
I think he has probably notably had this for 10 years at least, so it is really slow to progress.
Basically the aphasia is the main problem, but can eventually develop into dementia over time.
Hope this helps anyone. It has been a huge learning curve in understanding this as it is rarer than other dementia types.
Hopes this helps.

Hi and thanks for posting. It does help to hear from anyone who has experience with ppa as we seem to be few and far between.
 

marymmcc

Registered User
Jan 7, 2016
3
0
Toronto Canada
undiagnosed

I have had a "working " diagnosis of PPA non fluent type. Initially the only test that was abnormal was a SPECT scan show low perfusion in the left area of my brain. MRI is normal. Recently my speech became much worse. Another SPECT scan was normal. Now my neurologist us doubting the PPA diagnosis. A second opinion agreed. As a result my neurologist has no diagnosis for me and I am asked to return in one year. I am frustrated beyond belief! How long must I wait for a diagnosis? I am left feeling as though I am making everything up.
 

San 'Fairy' Ann

Registered User
Jun 28, 2014
31
0
merseyside
I have had a "working " diagnosis of PPA non fluent type. Initially the only test that was abnormal was a SPECT scan show low perfusion in the left area of my brain. MRI is normal. Recently my speech became much worse. Another SPECT scan was normal. Now my neurologist us doubting the PPA diagnosis. A second opinion agreed. As a result my neurologist has no diagnosis for me and I am asked to return in one year. I am frustrated beyond belief! How long must I wait for a diagnosis? I am left feeling as though I am making everything up.

Hi mary, I feel your frustration! These doctors have no idea how much upset they can cause us patients. I remember saying to my husband once that although I worry about the future of living with ppa, I worry more about having the diagnosis taken away and being expected to put my life back together from the thousand peices its in. His reply to me was this.........obviously something is very wrong with you and if it isnt ppa then its something else and they will get to the bottom of it. He was right of course and if we know only one thing about these dementia conditions its that they progress and so, as more symptoms appear the picture will become clearer. At least with a diagnosis we know what to expect but the unknown is a scary place. How long had you had the ppa diagnosis?