A few years ago I received a call out of the blue, from a lady who had been given a diagnosis of PPA and no further advice. We spoke for almost an hour.
Since then Helen and I have spoken regularly. More recently she identified that she wanted to share some of her journey for the benefit of others. Helen wrote this blog for me, which she asked me to post here. We felt this may be an opportunity for others to learn from and understand how it is to live with PPA. Helen and I have also recorded an interview for the PPA rare dementia support support group website. Once edited and uploaded this will provide a fantastic resource of information, support and an insight to living with this diagnosis for other people with PPA, their families and professionals also.
I am so grateful and humbled by Helen’s passion to share her journey:
Helen’s experience of being diagnosed with PPA:
I really noticed that I couldn’t find words in July 2016, whilst working at school. I would be talking and then blank, the words didn’t come.
A year passed and I was aware that my speech wasn’t clear so (although I have tried not to go to doctors in my life) I went to my GP in August 2017. Fortunately the GP was really good at listening and he referred me for more tests.
I had no idea that this would be a trigger to be referred to a dementia screening service. That was not what I was expecting and it was the first time that my symptoms were described as being under the umbrella of dementia.
I had the memory tests and it was obvious that it wasn’t a memory led problem but I was sent for a scan. The MRI scan of the brain showed evidence of mild asymmetry of medial temporal lobes. This clinical picture suggested a possible language disorder so I was then referred to a memory assessment service in Horsham.
I had a series of 8 hours of very comprehensive tests with a psychologist who was incredibly sensitive and thorough. .On 14 May 2018 she asked for family members to come for the outcome of the tests. I was told that everything suggested Primary Progressive Aphasia. As there are 3 main sub types at the moment progressive non fluent was the most accurate match.
I was ok with the diagnosis at that time because I knew it fitted what I was experiencing. It was more difficult for my daughters as there was no information about the condition. It was mentioned that I might only have 5 more years of living, giving up my driving licence, sorting out wills!!! I was referred to a specialist Doctor with a waiting time of 6 months.
Sadly the system doesn’t cater for the ongoing patient with aphasia in this situation. I was visited by a dementia nurse (who was very good and had researched PNFA) but was used to referring people with a memory led dementia.
I had two break throughs in the next part of my journey.
I found the Rare Dementia Support group and spoke to Chris Hardy who is the most superb, kind human!! He sent a letter to me which I file ‘Best Letter Yet’. I was reading about PPA and learning so much of my condition.
On one of the newsletters was the phone number for Anna Volkmer who has been instrumental with the use of speech therapy with PPA patients. I couldn’t believe that she picked up and spoke to me for 45 minutes and I learnt so much from her and I am always indebted to that.
Anna also directed me to speech and language therapy at Queen Square. The therapist there spoke so kindly and informative to me and I was sad to hear he was returning to Australia.
In July 2018 I went to a support group at Queens Square and at lunch I was talking to somebody and the consultant read my name badge and said I was on his list for September. I think I nearly fell over!!! It felt so personal.
In September I had an appointment with this consultant. This led to another brain scan and that was followed by a lumbar puncture (to eliminate the Logopenic variant) and also genetic testing which was negative. So I am in a non-identified sub group.
In November 2019, I assisted with the Research Programme form Queen Square. (3 days)
One of the projects is the link with Music and dementia which is of course close to my heart!!
As part of the treatment at Queen Square I was offered speech therapy.
I am finding this very helpful, identifying strategy, learning more about speech production.
I am an active teacher of music and in that area I don’t have problems.
Music is a language of its own. It doesn’t need words and that is so comforting.
I won’t speak of my struggles at the moment because in the most part I haven’t degenerated at any fast pace. I feel lucky that the disease is progressing slowly.
What is clear, every patient is very different.
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