1. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Hi All
    My wife Gill (51) has developed issues with her speech over the last year which seem to fit in with the signs of the speech variation of FTD. There is a history of AZ in her Family with her Mother being diagnosed with Picks and her eldest sister developing AZ in her late 50's (but we think some of the the symptoms were there for years but we didn't realise). A few of her elderly relatives also have developed AZ
    Gill's behaviour has also altered and more and more people are asking me "what is the matter with Gill?" Her family have also noticed and are worried. She has had an MRI scan which the GP said was clear but we have a Neurologist appointment on Wednesday. Has anyone else got experience of the onset of speech problems and their development? Her memory and abilities are fine but she's not the Gill I married 30 years ago, or even how she was a couple of years ago. Any advice or comments appreciated. I'm trying to avoid a long process of pre-diagnosis cul-de-sac's and being in limbo! Thanks
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Hi Dom

    I'm not sure about the speech but before you see the neurologist I would write down everything that has changed with Gill & the affects it has on her.
    Hand it to the dr & tell him to read it.
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I agree about writing all the changes down and giving the neurologist a list. I would also encourage you to write down the changes in speech and language separatelyas it may be that this will give an indication of which area of the brain is affected and this will be difficult for someone to bottom out in a single visit so lists will be very helpful in any kind of differential diagnosis.

    It could be so many things and i hope the neurologist will be a really positive first step for you.
     
  4. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    182
    BRIDGEND
    lewy body

    HI my wife has lewy body. which cause my wife to not speck her speech has now gone .see if you wife has lewy body.sorry about my spling im dislex
     
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,396
    Male
    Cornwall
    Hi I have Alzheimer's & FTD yes I also have problems for me the words get lost before i get to say them that causes frustration and I swear it's a communication break down along the way it's been so long now I don't beat myself up about any more
     
  6. Slugsta

    Slugsta Registered User

    My mum had a small stroke 3 years ago. She was very lucky that it didn't leave her with any limb weakness etc but it did affect her ability to find the right word (dysphasia). I have always been clear that I do not class this as 'confusion'. She knows what she means and what she wants, it's just that she cannot select the correct word to communicate this to others. However, it is now becoming clear that there is something else going on as well, she is due to have a CT brain scan at the weekend.
     
  7. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    109
    Manchester
    My husband was struggling to find words for a few years i took him to the doctors 14 months ago. He had a scan and saw two nurologists and was diagnosed with Alzheimers he also has memory problems. Its the early stages and he takes Aricept which seems to have slowed it down but the speech is no different. Its worth getting things sorted out because the tablets can buy lots of time in some people.
     
  8. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Thanks for all the comments. The list is a great idea. Gill acknowledges she has difficulties with her speech and also that it may be AZ, but is focusing on it being something else (such as stress etc) however she doesn't think she has changed in her behaviour, but a lot of our friends have noticed and commented on it to me, as they are worried about her. It's going to be difficult bringing this up in front of the Neurologist but they will need all the information I can give them!
     
  9. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Thanks for your response. Was the scan an MRI and did it show particular damage?
    What sort of tests did the Neurologists do?
     
  10. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Hi Tony
    How were you diagnosed? Did it take a long time?
     
  11. Slugsta

    Slugsta Registered User

    I completely understand why you would not want to discuss some of these things in front of your wife, I have the same problem with Mum. I have made a list of my concerns and make sure that everyone we see had read it. If you did this, you could send it ahead of time by post to the neurologist, or you could slip it to the receptionist when you arrive and ask that the consultant is given, and reads, it before you go in.
     
  12. DomC

    DomC Registered User

    Jul 16, 2015
    22
    The next step

    Gill has now been referred to the Salford Cerebral Function Unit in Manchester for more specific tests regarding FTD and PPA. It could be weeks before she gets an appointment but at least we have had contact from them.
    I think diagnosis will be a two edged sword, on one hand we will have a definitive reason for her symptoms and it will give us a direction to move forward with but on the other hand it will be a realisation of all our fears. With Gill's family history and her sisters current condition in a care home I can only imagine what will go through her mind if she is confirmed with FTD.
    She is off work and her bosses have been fantasic, they are aware of what it could be and have let her take a 3 month leave of absence on full pay!! However this will end on 28th November and they have offered to give her a payout and bonus to get us past Xmas. I'm not sure we will even have the appointment before then and without a diagnosis there are no benefits or help she can get.
    Her writing in texts and emails etc seems to be deteriorating, but she doesn't seem aware of it. Her speech is still bad but she actually seems more happier in herself now than for a long time.
    We are now closer than we have ever been, I go home every lunch time and we hug a lot more, she even laughs more now at my stupid jokes!!
    I am clutching at straws but I really hope she goes through all the tests at the CFU and they then say it's definitely not FTD, but as we are running out of alternatives as what else it can be I'm not holding out too much hope.
    If anyone else has any experience of the Salford CFU I would appreciate any comments?
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,324
    Female
    South coast
    I just thought I would mention that Picks is not Alzheimers - its the old name for FTD. I think it would be important for the neurologist to know that her mum had Picks/FTD.

    This limbo stage is horrible
    xx
     
  14. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    182
    BRIDGEND
    Lewy body

    ask is it lewy body.my wife has this .and some of the simson you say are like my wife has. Sorry im dislix .
     
  15. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    109
    Manchester
    My husband was referred to Salford Cerabal Function Unit and they diagnosed him with Alzheimers they seemed to understand the scan there. He started with memory loss and speech problems the other tests done at Oldham Royal werent conclusive. Its a very good hospital and they are very helpful.
     
  16. MorbidMagpie

    MorbidMagpie Registered User

    Nov 10, 2015
    23
    England
    My father's main difficulty is around speech. He was given a bit of an unclear diagnosis as the consultant wasn't 100% whether it was Alzheimer's Disease or FTD so they gave him meds for Alzheimer's (FTD has no treatment options to my knowledge).
    For a long time the rest of the family hoped it was stress that caused his symptoms but unfortunately this was not the case for us. He is now 55.
     

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