Could I have PPA/early onset dementia?

Discussion in 'Younger people with dementia and their carers' started by DundeeMan, Sep 29, 2015.

  1. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    Hi all,

    I already posted this in the Memory Concern and Seeking a Diagnosis forum so apologies for the cross-posting but I was hoping someone might be able to help me out with information about some of the symptoms I have been experiencing.

    For the past few months I've been experiencing what I called difficulty accessing my vocabulary, or finding words as it more commonly seems to be described. Like most people, I've experienced tip-of-the-tongue feelings before but this was different. it didn't feel like the word was on the tip of my tongue, it felt more like a complete blank, even though I knew I knew the word I was searching for. Normally it would come after a few minutes or a few hours.

    The pauses in my speech seemed to be happening more regularly so I made the classic mistake of googling the symptoms. First up: Primary progressive Aphasia. I have been panicking ever since. I have also been fitting other possible symptoms in which make things appear worse. I maybe have been mispronouncing words more frequently. I do confuse certain items (tumble dryer, dish washer and washing machine etc), and I drive my wife crazy telling her to turn right instead of left when she's driving. Maybe I have been using different words from the ones I mean.

    I have been trying to stay calm and tell myself that, while not all aphasia/dementia sufferers are old, it would be highly unlikely that it could be the case given my age and profile.

    I am 36 years old and generally in good health apart from minor asthma and allergies and being around half-a-stone overweight. My job is in PR so I work with language more than most people and have a sideline writing and publishing. We have been approaching a deadline so I've really been putting the hours in and stressing about the situation. On top of that I have a 10-month-old son so it's not as if I haven't had a lot on my mind and I have wondered if this could be stress/tiredness related. Now that I've found out about PPA and early onset dementia I'm much more aware of my speech and language use and this is exacerbating my anxiety.

    I have an appointment with my GP this week so what I'm really looking for is information about what I should ask him as well as what I should look out for and what i should dismiss as being figments of my panicked imagination.


    Cheers.
     
  2. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    hello and welcome . not sure about what you should ask but it does sound a lot like stress ,I live with stress for the last 3 years MIL moved in and was diagnosed with Vascular dementia ,I mum died in my arms , daughter went off to uni I am always for getting things telling my husband things 3 or for times . speak to dr explain your fears .google can scare you into thinking you have something .
    and good luck
     
  3. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    DundeeMan: The very last thing for you to do when you are worried is to go to the Internet.

    Don't do it. Please, as someone who has lived with another who had terrible fears and tried to self-diagnose himself this is an absolute no-no. I'm telling you that because I care that you've told us.

    Thank goodness, you've written that you will be seeing your doctor. In the words of a very old saying: "That's the way to do it!" Don't over-stress or upset yourself. I have come up against various things like this since my hubby had dementia.

    Just look back at what you have written, and tell me how hard it was? It's a long post. Was it difficult to write? If so, why? Do you think your reasoning skills are intact? You could ask for a test to see what your language and numerical skills are like. If you blank on words, believe me; I do it too. I do not have dementia and I do not worry about it. I am desperately concerned, at the moment over other things, and find the battles I face very overwhelming. That doesn't help. Things get so worrisome in other respect that I almost shut down. That's not a symptom of dementia for me. It's just plain stress. I am answering you because what you've written touched my own heart and I care about it.

    When you visit your GP, don't panic. You are quite within your rights to discuss your concerns, but please, don't panic. I truly hope things settle down in this respect for you. Do, please update us if you feel so inclined. We all care what our fellow carers are going through.
     
  4. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    Thanks to you both for your responses. Given what you are both going through I find it very humbling that you have taken the time to talk to me and try to allay my fears.

    You are both right, precious little good ever comes of googling symptoms. I have been a mess since I started doing so and broke down at the thought of not seeing my little boy growing up earlier on.

    The things I am experiencing are also much worse as a result of me fixating on them. Today I have been sitting with my cursor lingering on the screen, unable to remember what I was about to do, entering the wrong passwords and being confused by tasks I perform every day. I wasn't exhibiting any of these symptoms before Friday so I have to keep reminding myself that things don't progress at that rate so the only explanation is my state of mind.

    Chuggalug - you ask whether the post was hard to write. I would say it was harder than it should have been for someone with my experience in writing. Today my written work and communications have been all over the place but, again, the difference in just a few days is so marked that I have to think that's a result of the way I'm feeling rather than an underlying condition.

    I truly hope no one thinks I'm wasting their time here or am intruding on a space for people with real, diagnosed problem. I have undoubtedly handled the situation poorly to date but I know the language problems that led me here - whether they have a benign cause or not - are real.

    Thanks again.
     
  5. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Best thing you can do, possibly, is to print out this thread and take it to your doctor. Let the gP read through; then the both of you can decide on a plan of action. You've already jumped a few hurdles, DundeeMan. You were courageous enough to talk to a load of strangers on here, and you've booked to see the doctor.

    You done good, my friend.

    Do feel free to update if you wish; chat to us on here, or alternatively, keep your feelings private. But please know we all care what happens, and wish you a good visit with the doctor, and that your fears can either be allayed, or carried through to further tests if necessary. I truly hope it isn't necessary, but never turn any help or advice away. If your GP makes a suggestion, then run with it.

    All the very best to you.
     
  6. Soobee

    Soobee Registered User

    Aug 22, 2009
    2,734
    South
    There are lots of other conditions that can make you feel like you've got dementia and they are much more likely at your age. Your doctor will give you some blood tests etc to rule these things out.

    I'm 43 and I often can't find the words for things. My mum had dementia and I sometimes wonder if I will develop it (but I don't often think about it). Last week I went to the doctors to have some minor surgery and I stood there at reception going "I've got an appointment with the uh, with the um..." and just went completely blank - the receptionist knew what I meant because I was making a scissors motion with my hands but I just can't find the words. I'm the same at home "put the thingy on the thingy over there, no this way".

    I am sure that this kind of thing resonates with many on here (I hope it's not just me!!!!)
     
  7. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    PPA diagnosed

    Hello everyone, this is my first post ☺ dundeeman I'm not qualified to say whether you have ppa or not but do agree with those who think your symptoms could be stress related and are not the same as my own. I hope this gives you some comfort.
     
  8. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    Thanks for the kind words and advice Chuggalug. I've calmed down considerably since getting home from work (some time with my son does that for me better than anything) and I'm trying to be more positive and rational I. My outlook. Everyone here is helping.
     
  9. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    #9 DundeeMan, Sep 29, 2015
    Last edited: Sep 29, 2015
    Hi Soobee,

    Nothing worse than the blanks the second you meet someone new. I'm having them several times a day now but, as I said earlier, I'm possibly bring more on by panicking.

    From my perspective it's good to hear you say there are other things that cause dementia-like symptoms. I had a search for some to reassure myself but couldn't stop my mind from jumping to the worst-case scenario.

    To be honest I feel pretty guilty taking up the time of people dealing with serious illnesses or caring for those who do when I don't know for certain that there's anything wrong with me but that makes me all the more grateful for the welcome and reassurance I've received here.
     
  10. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    Do you have PPA yourself San? If so, I'm sorry to hear it and hope you're doing well.
     
  11. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    DundeeMan, you are most welcome :) If you've got a non-stop working life, perhaps a short break and a good walk somewhere quiet and peaceful would do you the power of good. There's nothing quite like finding a bench to sit down on and just enjoying the silence of creation: Trees; birds, even someone walking their dog. Monday morning, I sat outside with that beautiful moon and the stars above me and the night creatures calling to each other. In 19 years of living here in my village, I have never sat outside in the night. It's a wonderful thing to do. You need peace and quiet and the time to enjoy it. I hope your doctor thinks the same.

    Really wish you all the best, mate :)
     
  12. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Soobee: Mum lives alone and doesn't speak to a soul. Not because she's strangely behaved, but because there is literally no one to talk to. She's often said to me that because she doesn't use her conversational skills much, she feels like she's losing them.

    That's why I'm so active on many blogs and other places. If we can't actually talk to each other, at least we can type! It certainly, for me, is the Next Best Thing, and one of the reasons why I haunt this place every day!

    Never thought a blood test could tell you why these things happen. I'm not going to ask for that yet; even at 53! Well, almost. I will be that age in a about three weeks' time.

    Anyone fancy Skyping? :D
     
  13. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Yes dundeeman I was diagnosed four years ago and I am doing well thank you. Good luck with your doctor appointment and don't be too surprised if he/she has never heard of ppa! When I saw my gp four years ago it was about something unrelated but she noticed that my speech was different than before so she asked me about it and then suggested a brain scan and based on the results I was referred to a neurologist.
     
  14. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17

    That's great you are doing so well after four years.

    If you don't mind, could you tell me a little about the symptoms? The way patients describe them is often more helpful than the way they are presented online.
     
  15. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Hi DM I don't mind at all. I started with speech difficulties, basically I went to bed OK and got up with a stammer! I repeated words like I was stuck and couldn't move on to the next word. I had been finding reading challenging and would make writing mistakes. That was the beginning and I stayed stable for a couple of years. I have the logopenic variant. I now have many symptoms of FTD but to have ppa you would have a couple of years before any other symptoms present themselves. It is a slow process so it creeps up on you rather than bombarding you with lots of different things at once. I am now unable to function outside alone, like a rabbit in headlights.
     
  16. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    Sorry to hear that you're now finding it difficult to function outside alone. I hope you are getting help to step outside the house whenever you can. Given the stage you are at I find your upbeat attitude and desire to help others inspiring.

    No stammer for me, more like tailing off in the middle of a sentence and having to describe something rather than naming it.

    The other problems I've noticed (but again this may be because I'm looking for them) is a tendency for a different word than the one I'd intended to come out and for me to stress certain parts of words (reee-search or reee-ception etc).

    I started encountering difficulties with my handwriting last week, which was one of the reasons I started searching online for answers. At times it's like I just can't make my hand form the outline on the page. My syntax has also suffered and earlier today I wrote 'without going into too many of the details' instead of 'too much detail'. For someone who works as a writer, this is pretty worrying!

    I'm trying not to conflate unrelated episodes but every time I make a mistake with language it sets me back.
     
  17. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Any change in your language performance does require investigation because it is happening for a reason be that stress or other it needs attention. Using wrong words is a common thing for me........sometimes much hilarity ensues lol. I tend to talk around a subject and can be vague but people around me have gotten very good at filling in the gaps. Speech is effortful at best. Have you started any new medications lately? Just a thought! Although I would love to have a kindred spirit I truely hope you don't have ppa as I wouldn't wish it on anyone. I was 53 when diagnosed. But it isn't all doom and gloom because if I want to eat cake or apple pie I do lol.
     
  18. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    I mean absolutely no offence by this but, despite the kindness you've shown me, I really hope I'm not your kindred spirit either!

    Only new medications I've started are a slightly different type of inhaler and eye drops prescribed by the optometrist. My mind blanks/word-finding difficulties have gone from once every so often to almost daily to several times a day. I am aware that the last jump took place after I started googling symptoms, however.
     
  19. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    No offence taken DM ☺ update when you can and beware the power of Mr google
     
  20. DundeeMan

    DundeeMan Registered User

    Sep 28, 2015
    17
    I'm just back from seeing the doctor, who has strongly encouraged me to take a week off work.

    She listened patiently to me describe my symptoms, asked a lot of questions about how I've been feeling and generally couldn't have been nicer. She hasn't diagnosed stress or anything else, but did say it was the most likely cause of the problems I've been having, especially given the amount I work with language.

    The doctor wasn't dismissive of my fears about aphasia etc but she did remind me of how rate it would be and suggested we look at dealing with a possible case of stress/anxiety in the first instance. If the symptoms have not improved after that then she'll look for an alternative cause and seek a different treatment route.

    I'm getting some blood samples taken next week and have to make a follow-up appointment for results and to report on how I'm feeling after resting up for a bit.

    Here's hoping.
     

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