This message is posted anonymously by AphasiaNow to protect the family concerned.
Hi,
I wonder if you could help us.
My mum, who lives in the .... area, has recently been diagnosed with Primary Progressive Aphasia.
My sister and I, and our respective families feel that we need to be better equipped with knowledge and advice in order to support her and understand the condition more effectively than we do at the moment, including helping her to come to terms with the diagnosis which has not yet really happened. We have encouraged her to get in contact with you herself but she won't hear of it, mainly because she thinks it would be a waste of time, as she thinks you focus mainly on Aphasia as a result of stroke/ brain injury etc, and that no one will know anything about her particular form of aphasia.
But my sister and I were still hoping that you may be able to help us. We have read up on everything we can about PPA online - mainly research from the USA - but have so many questions and concerns that we would like to talk though with someone who understands the condition better than we do.
My mother is being seen by a doctor at the NHNN in London (it was there that she was diagnosed) but since her diagnosis in November 2012, she has not had another appointment and won't be seen again until June/July this year, so we are feeling somewhat in limbo at the moment. She has been promised speech therapy too, but despite all our efforts has still not received any on the NHS, and we are keen to arrange something privately to tide us over until we see her doctor in June/July. We fully understand that there is no cure and she will not get any better (although we are not sure she believes this) but even so we are hopeful that speech therapy could help and certainly not do any harm.
We also suspect she is suffering from depression as a result of her speech issues and the problems PPA causes her - she sees it as a failing in her, and lacks self-confidence as a result. She is 69, only retired a couple of years ago, is full of energy and fit and healthy in other respects, but had suffered from speech problems for about 6 years prior to the diagnosis. She was a high powered, dynamic leader in her professional field and eventually retired as she found speaking at conferences and meetings increasingly difficult.
Is there anything you can do to help? - perhaps to put us in touch with someone we could meet to talk to about the PPA and to get some advice on the best approach to helping mum and moving things forward. We are also interested in making contact with a speech therapist in Gloucestershire who has prior experience with PPA - if such a person exists.
I do hope you don't mind me getting in touch. I woud quite understand if PPA is not your field and there is nothing you can do, but I thought it was worth a try. I was delighted to come across your website and was encouraged by the amazing work you are doing.
Best wishes, and thanks for reading this, NB
AN.logo
Dear NB,
ReplyDeleteIt seems that you have researched well and already have a good knowledge of the condition, and its likely course. So I will not be able to provide you with too much hope, I'm afraid.
You say that your Mum has had speech difficulties for 6 years already, so I think it's is likely (though I am not a medical doctor) that she may have the 'nonfluent' variant, rather than the fluent 'semantic dementia' variant. From your experience of your Mum's condition, your own research and your Mum's neurologist, you may already know that. Please note that while the fluent variant, though called 'dementia', is not dementia in the popular sense of the word. The condition is called 'primary progressive aphasia', because the victim is usually free of other cognitive problems like memory or intellectual problems. You should be aware, however, that such difficulties may develop in the later stages. Be aware too that the condition can last for many years with a gradual deterioration in speech fluency. The final stage (for nonfluent forms) is virtual muteness, and it becomes very difficult indeed for the person to generate speech.
What can be done?
There is no cure, though your Drs may suggest some drug treatment that may help some aspects. Speech therapy can reduce some of the symptoms and you should have speech and language therapists (SLTs) in your locality (Wilfried will be a good source of speech and language therapists in your locality with relevant experience). You should really push for this, with your neurologist & GP too. There will be things like day care and support groups that your Mum can join. If she's not keen now, she may be more open later down the line. If unable to reduce symptoms, a good SLT will work towards providing some strategies to 'manage' some of the speech symptoms.
Your Mum's psychological reaction (I think you suggested that she's unwilling to fully accept that things will get worse at the moment) is not uncommon, and understandable. It seems that we adopt a form of denial when faced with a diagnosis like the one you Mum has had. There is no easy way to deal with this. Her depression is something that can, and should, be treated. There is drug treatment, of course, but this may only mask the depression and result in side effects. I am not an expert, but I would suggest seeking therapeutic help from a good clinical psychologist or counselor. Be aware, however, that psychological services are very stretched.
Some of the best neurologists in the world are at NHNN, although that may be little comfort, given they are some way away, and are also able to do little for progressive conditions like your Mum's.
I am sorry that I am unable to provide more comforting words for your Mum, and you, but please get back if I can provide further information.
Best
Chris Code
Professor, University of Exeter
Dear NB
ReplyDeleteYou can refer your mum to the Gloucestershire SLT Services directly without a GP or Consultant referral. Please ring 0300 4228105 and someone will take her details. she will be placed on a waiting list according to where she lives and someone with the relevant experience and knowledge will be able to see her.
Kind regards
Jennie Marshall
Speech and Language Therapist