Bensons Syndrome

[Pipi]

Hullo

My husband has recently been diagnosed with Benson's Syndrome - PCA.

He is high functioning and has compenstated for some time before diagnosis.

He is suffering from functional blindness - a disabliity hard to describe. Alongside other issues.

Is there anyone who is caring for someone with the same who could offer some helpful insights?

Thank you.

 

[Grannie G]

Hello Pipi

There is an Alzheimer`s Society Factsheet which refers to Benson`s Syndrome.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=135

I don`t know if you have looked at it, but I found the following information interesting.

For further information and support contact the National Hospital for Neurology and Neurosurgery

Perhaps they can help you with Functional Blindness.

 

[PostTenebrasLux]

PCA experience

Dear Pipi,
Firstly a warm welcome to Talking Point - the safe haven in this difficult journey.

I have cared for my beloved cousin who was one of the first 50 people in the UK to be diagnosed (2003) with PCA. She died in January this year, aged only 67.
I have written a blog on my journey through PCA and it contains many links to websites I hope you might find useful. A link to it in my signature.
In the first instance, tell us where you are based, what support you have and what kind of help you would value at this stage - I do not wish to overload information!

Imagine looking at a Picasso portrait: - all the facial features are there, but appear somewhat distorted - that is how my cousin explained her visual experience. Another is imagining seeing a printed document with a caterpillar gradually eating its way through the letters so that eventually nothing is left to distinguisgh/define the individual letters, so that in the end everything loses its meaning.

Look into possibly getting a talking watch (from the Blind) to enable some emotional and practical independence.

I look forward to keeping in contact.
Again, a warm welcome,
Martina

 

[sallyc]

I have sent you a pm.

 

[tre]

Hello Pipi,
Welcome to TP. There are several Tpers who care for partners with PCA. My husband David was diagnosed in Jan 2008 after much trailing around opticians and eye specialists. I think he had it some years also but was also " high functioning" having a Phd in Biochemistry.
The visual effects are to say the least unusual. I cannot tell you the number of people who think large print will help David. It does not. One of the first signs we saw saw that he could no longer read the newspaper headlines although he could at that stage read the article beneath. The way I think of it is as if you had broken a mirror but repaired it crazy paving fashion so that the pieces were back together but not flat. You can see clearly little bits in the fragments but cannot make out the whole picture.
We have found that the PCA Support Group has been wonderful. If you are not already aware of it look at pca.support.ucl.ac.uk and you will find a wealth of information.
There are several TPers whose partners have PCA and certainly some are only recently diagnosed.
If you possibly can I would really recommend you come along to the support group. It is so helpful to find others in the same situation as except for those we have met there I have never come into contact with anyone else with PCA so it is good to meet people who understand.
with all good wishes,
Tre

 

[Pipi]

Apologies - I am just getting used to how this forum works in terms of replying etc.

Thank you very much - your comments are most helpful.

Hello Pipi,
Welcome to TP. There are several Tpers who care for partners with PCA. My husband David was diagnosed in Jan 2008 after much trailing around opticians and eye specialists. I think he had it some years also but was also " high functioning" having a Phd in Biochemistry.
The visual effects are to say the least unusual. I cannot tell you the number of people who think large print will help David. It does not. One of the first signs we saw saw that he could no longer read the newspaper headlines although he could at that stage read the article beneath. The way I think of it is as if you had broken a mirror but repaired it crazy paving fashion so that the pieces were back together but not flat. You can see clearly little bits in the fragments but cannot make out the whole picture.
We have found that the PCA Support Group has been wonderful. If you are not already aware of it look at pca.support.ucl.ac.uk and you will find a wealth of information.
There are several TPers whose partners have PCA and certainly some are only recently diagnosed.
If you possibly can I would really recommend you come along to the support group. It is so helpful to find others in the same situation as except for those we have met there I have never come into contact with anyone else with PCA so it is good to meet people who understand.
with all good wishes,
Tre

 

[Pipi]

Thank you.

I am based in NZ - with only 5 people being diagnosed with the condition here, there is very little information available.

I will look at your blog.

I was sorry to hear your cousin has died - such a struggle for her and for all who cared for her.

The changes in my husband are subtle but increasing - information of any kind is much appreciated.

Best wishes

QUOTE=PostTenebrasLux;570473]Dear Pipi,
Firstly a warm welcome to Talking Point - the safe haven in this difficult journey.

I have cared for my beloved cousin who was one of the first 50 people in the UK to be diagnosed (2003) with PCA. She died in January this year, aged only 67.
I have written a blog on my journey through PCA and it contains many links to websites I hope you might find useful. A link to it in my signature.
In the first instance, tell us where you are based, what support you have and what kind of help you would value at this stage - I do not wish to overload information!

Imagine looking at a Picasso portrait: - all the facial features are there, but appear somewhat distorted - that is how my cousin explained her visual experience. Another is imagining seeing a printed document with a caterpillar gradually eating its way through the letters so that eventually nothing is left to distinguisgh/define the individual letters, so that in the end everything loses its meaning.

Look into possibly getting a talking watch (from the Blind) to enable some emotional and practical independence.

I look forward to keeping in contact.
Again, a warm welcome,
Martina[/QUOTE]

 

[Pipi]

Thank you so much - your description with regards your husband's eye sight certainly sounds similar to what my husband is experiencing.

The support group would be brilliant however, i am based in NZ - we don't have a group here for PCA hence, my reaching out.

Thank you again.

Hello Pipi,
Welcome to TP. There are several Tpers who care for partners with PCA. My husband David was diagnosed in Jan 2008 after much trailing around opticians and eye specialists. I think he had it some years also but was also " high functioning" having a Phd in Biochemistry.
The visual effects are to say the least unusual. I cannot tell you the number of people who think large print will help David. It does not. One of the first signs we saw saw that he could no longer read the newspaper headlines although he could at that stage read the article beneath. The way I think of it is as if you had broken a mirror but repaired it crazy paving fashion so that the pieces were back together but not flat. You can see clearly little bits in the fragments but cannot make out the whole picture.
We have found that the PCA Support Group has been wonderful. If you are not already aware of it look at pca.support.ucl.ac.uk and you will find a wealth of information.
There are several TPers whose partners have PCA and certainly some are only recently diagnosed.
If you possibly can I would really recommend you come along to the support group. It is so helpful to find others in the same situation as except for those we have met there I have never come into contact with anyone else with PCA so it is good to meet people who understand.
with all good wishes,
Tre