I'm looking for support ..

.. for my mother-in-law who is losing her speech and is very frustrated, down and lonely; 

I want to know better how to encourage her to communicate in other ways. 

She also has limited mobility and can no longer touch-type although she can use an iPad! (cautiously!) 

Samantha

Blogging about stroke and #aphasia

Redoable life – putting the brain back together after a stroke

http://redoable.wordpress.com/

Volunteers with aphasia needed

Practicing conversations in a virtual environment.

'EVA' is a computer based language treatment. 

You will practice talking in a virtual communication environment. 

We have built a private virtual world with houses, shops, parks, restaurants and bars.
 
If you live in or near London this may interest you; but you need to be quick .. there are only 20 places!

http://www.soi.city.ac.uk/eva/?page_id=271

Is there a software program that is really simple to use and allows  the patient feedback/encouragement? 

And also what adaptive equipment can the patient use to assist in daily routine activities communications.  

I heard there is something out in the market place called a lifebook.  

A flip/card that displict daily activities.  

Please send all available info:   David B. Tillman   

Thank you.

My email address is: cdwriter12@comcast.net

My brother in law who is Italian, aged 61 has recently had a stroke .

I would be grateful for any help on information ie to translate english apps to Italian .

Thank you, Tom Pringle

pringletom2@gmail.com

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

Planet Aphasia 

Reflections about living with, caring for and being cared for by a home, a garden and a partner with primary progressive aphasia 

http://doonandiddlysquat.blogspot.co.uk/

Imagine a Life with NO Words .. Give me Voice .. I want to talk, I want to shout ..

https://www.youtube.com/watch?feature=player_embedded&v=8d3vrkKk5m4

HI

I HAVE JUST BEEN TOLD THAT MY 4 YEAR OLD SON HAS BEEN DIASNOSED WITH APHASIA

COULD YOU PLEASE IF POSSIBLE VERIFY THAT SOMEBODY SO YOUNG COULD HAVE THIS PRIBLEM.

HE IS LIVING IN THAILAND NOT THE UK

THIS WHY I AM A LITTLE WEORRIED & WOULD LIKE A SECOND OPINION 

MANY THANKS, Norman Vernon

Hello there Jennie and Wilfred

I just felt I had to say thank you for all your efforts on behalf on the Monday group.

Stan has not been really well for some time now but he is always ready to come to the Monday group.

It has given him confidence in doing the things like the Gardening mornings. 

He just hasn't been interested in doing anything like it at home, but today after dinner he got up and put his shoes on and went out into the garden. I had bought a load of plants hoping that he might plant the garden out side the kitchen patio window.  Someone had dug it over for me. I put him an apron on and he was out there in the sunshine for over an hour.  I'm sure he enjoyed it he kept shooing me away he wanted to doit his way- so I let him.

Thank you for your encouragement  

Doreen Stan

I am very interested in Melodic Intonation Therapy as my son Larry had a stroke at the age of 40, 3 years ago & he has aphasia. 

He is very frustrated at not being able to have a conversation with people & especially with his 2 little boys aged 6 & 4. 

I cannot seem to find anyone in the UK who uses MIT therapy & the usual therapy does'nt seem to be making much progress any more. 

Larry understands absolutely everything but just cannot says what he wants to.

Do you know if there is anyone who can help us or even a MIT kit or program that we could purchase.

Thank you, Kind regards, Stella Boylan

Hi, 

I am hoping you could help me understand something that happens with my son periodically. 

He is sixteen and has a diagnosis of Asperger's, which only came about 18 months ago as he was experiencing anxiety at school. 

He is a high achiever and gets good grades. 

When he is under stress he cannot speak or write at all, he cannot get words out at all, not even garbled or croaking. 

He cannot write either, he grips the pencil and presses it on the paper but all he manages to do is break the lead. 

This has caused some problems in exams and I am trying to get the school to allow him to use a computer as this would remove some of the stress he encounters in exam conditions but they are reluctant. as they feel it would give him an 'unfair advantage'. 

Does this sound like Aphasia, would typing help 'bypass' the speech blockage?

Many thanks for you help 
MD

A young man who has Aphasia is very soon going to go off travelling on his own to Canada. 

I was wondering if a card with an explanation of his condition might be helpful to show to people if/when he finds his communication disorder a real barrier, and I was wondering if your organisation, with Logo on, might offer such a card? 

If it doesn't might you suggest the appropriate wording for such a card that i could make for him?


Vivienne