1. EmilyFB

    EmilyFB Registered User

    Apr 24, 2014
    1
    Hi Everyone,

    This is my first time posting in the forum. I'm Emily (30) and My Mum (59) has recently been diagnosed with early onset dementia, the tests have shown that she has a form of dementia known as Bensons Disease - which I have read only 5% of people with dementia have. Due to the rarity of it none of the experts can give any idea of how long she has had it or what the long term effects will be (all I really know is it affects spacial awareness and motor neutron function). I was wondering if anyone else has experience of Bensons disease? There are lots of things I would like to discuss in time like how to deal with such difficult news, feeling gully as I live in another country and the financial side, but I thought this would be a good place to start!
     
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,485
    Female
    England
    Hello Emily,

    So sorry to hear your Mum has dementia. I had never heard of Bensons until the author Terry Pratchett announced he had dementia. I hope that someone can come along and give you a little more information but to be honest what ever form of dementia we are dealing with we all seem to experience very similar forms of behaviour.

    So welcome to the forum and remember there is a great deal of knowledge, empathy and help here. Come along and use it.

    Jay
     
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    A warm welcome from me too, although I have not heard of Bensons disease either unfortunately. I do hope you can get the information you need from someone on here, but if not I am sure you will receive lots of advice, support and comfort from the lovely members of the forum.

    Despite the number of dementias there are, there will always be common things that we all deal with and can help each other through.

    xx
     
  4. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,431
    Hi there. i just googled Terry Prachett dementia and found there was quite a lot info about Bensons talking about him as he has it.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,544
    Kent
    This is from the AS Factsheet on Rarer causes of Dementia.

     
  6. ReneeC

    ReneeC Registered User

    May 17, 2014
    11
    Hi Emily,

    I'm in the same boat, unfortunately. Mum (58) has been diagnosed this week with Posterior Cortical Atrophy (PCA) - which I believe is also known as Benson's syndrome.

    We have noticed things happening with mum for two/three years, and while it's a bit of a relief to have an answer, we are all pretty devastated.

    There are too many things to worry about- mum,dad,my sister and brother, my own children, finances, care...and I can't help but feel very anxious, wondering if it's hereditary.

    Hopefully this forum is the right place for us to get some firsthand information and support.

    I hope you're going okay x



    Sent from my iPhone using Talking Point
     
  7. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,485
    Female
    England
    Hi Renee and welcome to TP. Sorry to hear of your Mother's diagnosis and know first hand how devastating it is to sufferer and family.

    Now that you have a diagnosis you can get things arranged. Get the formal things sorted first like lasting power of attorney, wills up to date and advising the DVLA if your Mother drives. It does not mean your Mother will loose her licence but she needs to let them know of her diagnosis.

    If she is already needing a lot of help to function then apply for attendance allowance. If this is given it allows your Father to apply for a 25% council tax reduction. There is also carers allowance available if her carer qualifies for it.

    Please take each day as it comes, enjoy your time with your Mum and worry about tomorrow when it comes. All sufferers are different, maybe get all the symptoms you read about on here but not at the same time.

    There is lots of help on here, so many carers with a great deal of experience and all of us ready to help, support or just chat when you need an ear. It is difficult sometimes to off load your fears and anxiety on family and friends so when you feel like a rant come and rant to us. We have seen and heard it all.

    Take care and remember everything is not going to fall To pieces tomorrow so continue to live your life.

    Take care,

    Jay
     
  8. littlebylittle

    littlebylittle Registered User

    May 21, 2014
    1
    Ontario, Canada
    add another one to the list

    My husband (57) was diagnosed with PCA in February. Odd things had been happening for a least 2 years. He had to stop work over a year ago. He used to read every night before turning out the lights, but he doesn't any more because he either forgets what he read or he reads the same line over and over again. His driver's license was suspended. He sometimes has difficulties getting dressed, mostly if something is inside out. Sometimes he can't see what's directly in front of him. He uses the phone, tv remote, rides his bike, cuts the grass, gardening and fixes the odd thing here and there. Has a hard time with `man`chores like replacing light fixtures so I became an electrician in an hour. I`ve become driver, cook, cleaning lady (he still vacuums, does the dishes, empties the dishwasher), shopper, prescription pickup person, financial manager etc, all littlebylittle as my screen name. He's lost interest and motivation with some things he used to love to do but now finds it too difficult. Everyone says take it one day at a time, and we try, but its so hard when you don't know what's around the corner. Support networks are coming together, unfortunately there is not a lot of information on PCA in Canada and no online support groups like this one I just found.
     
  9. ReneeC

    ReneeC Registered User

    May 17, 2014
    11
    Thanks so much, Jay. I really appreciate it. I believe it is all in its early stages with mum. She still functions quite well and is mainly having cognitive and spatial awareness type issues.

    Are the tax benefits etc that you speak of in Australia or are you UK based? We sure have a lot to look into! Hoping that her doctor will be able to point them in the right direction as far as assistance is concerned too.

    Thanks again, :)


    Sent from my iPhone using Talking Point
     
  10. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,485
    Female
    England
    The benefits etc are Uk

    Jay
     
  11. ReneeC

    ReneeC Registered User

    May 17, 2014
    11
    Thanks Jay, I'll start looking into available benefits here.


    Sent from my iPhone using Talking Point
     
  12. clog

    clog Registered User

    Oct 25, 2009
    9
    PCA or Bensons Syndrome / Disease

    Hi EmilyFB, ReneeC, & littlebylittle,

    I am a pca carer and there are a few others on here too.
    Check out the old threads.

    Here are some PCA contacts for you.
    There is a PCA support group based in London, at UCL (Univ. College London/Institute of Neurology, Queens Sq). They meet 3 times a year. There's a link on my website.
    There is also a closed Facebook group for PCA, Search for 'Posterior Cortical Atrophy awareness' and ask for permission to join. You can share experiences and knowledge re PCA.
    Stick with this Alzheimers Forum too.
    There's a PCA Australia website too if any of you are there.
    I have a static website where you can find the links and some pca stories.
    www(dot)coconutbeach(dot)co(dot)uk

    I hope you find some of this helpful.

    Kind regards.
     
  13. ReneeC

    ReneeC Registered User

    May 17, 2014
    11
    Thanks Clog. I'm in Australia. I tried the help line here for some support ideas but never got a call back - I'm very glad I found this forum, I'm sure it will help immensely.


    Sent from my iPhone using Talking Point
     
  14. ReneeC

    ReneeC Registered User

    May 17, 2014
    11
    Oh, and I checked out your link- it looks wonderful, I'll have a more thorough look soon!


    Sent from my iPhone using Talking Point
     

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