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Am I getting Alzheimer's

Posted , 13 users are following.

hilary_76724
hilary_76724

Some of you may remember me from last year when I got married and questioned whether I should put my poor fiancé through the trauma of Polymyalgia . I am now on 60 mls every 2 months, reduced from 80. Sine reducing I am losing my hair, bruise easily and now can't remember words. Hey I am ex BBC journalist and I think quite intelligent. Lately I just can't remember words. My poor husband.

 

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  • hilary_76724
    hilary_76724

    Posted

    Sorry I forgot to say I went up to a much larger dose a few months ago when they diagnosed GCA thanks to Eileen. Now back on track. Believe it or not I had to search in the back of my brain for the word GCA
    • christine_fay
      christine_fay hilary_76724

      Posted

      I have often thought that either PMR or Prednisolone brings forward conditions that we may have quietly creeping along in the background of our bodies everyday functions. Like cataracts..you wont get them unless you were going to get them anyway. Stomach problems, dicky heart and veins. The inflamation just agreavates these silent bombs.

      I am glad my cataracts were speeded up and could be fixed without a long drawn out decline whereby they may have thought me too old to benefit at a later age. Although my hair is now recovering I actually have two lovely natural looking wigs for those bad days. I would not have even thought of that before.Now I feel confident I can age a little more gracefully. smile

  • pat38625
    pat38625 hilary_76724

    Posted

    Hi Hilary, I do remember you.  I don't know if it's the pred or PMR itself.  I have a feeling it was the pred but I couldn't remember for example what I wanted out of the kitchen cupboard.  I would be standing at the sink and need something from the cupboard but could not remember for the life of me what I was at the cupboard for.    I would start to talk about something and then couldn't find the right word in a sentence to say.  It was frightening for me.  My mum had Dementia, and my grandmother also and yet I knew it wasn't Dementia.  I found it so frustrating and wanted to cry many times.  Yes I bruise very easily, I have the biggest bruise on the part between thumb and finger due to an acupuncture needle, and even though the needles were placed the Physio didn't manipulate them.  Also I have always had fine hair so I cannot answer that one.  Please don't be too hard on yourself.  When I reduced my pred to a lower dose over time, my memory improved.  I hope that helps and please take comfort that you are not alone with this.  You take care.  Regards Pat.
  • Susanne_M_UK
    Susanne_M_UK hilary_76724

    Posted

    Hilary, high doses of pred mess with your head! I've been right up to 60mg and at 40 several times and I fear for my level of brain function sometimes.

    I can't remember simple words, "thingy" features a lot in my vocabulary now.

    I have to write things down or I forget, and I even forget when I've written it down. I used to be quick thinking, full on, busy, busy in my job, which I gave up a year ago. Now I find it hard enough to write a shopping list!

    So, no, I doubt you are getting Alzheimer's, just pred brain in the extreme.

    • linda17563
      linda17563 hilary_76724

      Posted

      Yes, I am the same....forgetful and DIRECT I`m afraid, so it`s predbrain, and (ste).... ROID rage....good luck....
    • Susanne_M_UK
      Susanne_M_UK linda17563

      Posted

      Direct! Yes, I've become very "direct" as well.

      I also find myself getting overly annoyed at minor, pointless things. I had a near, full blown fit the other night when I discovered poor hubby had cut a new lettuce in half so that it would fit in the fridge bag!

      I mean...he'd spoiled it, What was he thinking, you don't cut a nice new lettuce in half, it would go off quicker etc etc. I was practically on the ceiling with fury.

      I did apologise later! :-)

  • MrsO-UK_Surrey
    MrsO-UK_Surrey hilary_76724

    Posted

    Hilary, I agree with Susanne, it's far more likely to be steroid brain fog, as we call it, rather than Alzheimer's.  I remember well when being on 40mg just standing in the middle of the kitchen wondering what I was about to do!  Rest assured it will get better.

    ​Bruising, together with thinning skin, is a very common side effect of the Pred.  Arnica is a great help - I got through mountains of it.  It is essential to use plenty of moisturiser everywhere, and the best that I found was Double Base, available over-the-counter, and on prescription in some cases.  Your skin will return to normal and the bruising will stop as you get to the lower Pred doses.

    ​I went through a stage of worrying about my already fine hair which was coming out and blocking the plughole for a while.  But it returned to normal as I got lower on the steroid dose. 

    ​I hope this helps to reassure you that better days are to come even if there are a few bends in the road on the way.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey hilary_76724

      Posted

      You're welcome, Hilary.  Just take each day as it comes, giving yourself lots of TLC, and hopefully it won't be too long before there are fewer days of feeling low and many more good ones.
  • tina-uk_cwall
    tina-uk_cwall hilary_76724

    Posted

    Hilary, I may not have  ever been an ex BBC journalist but I was a broadcast journalist for many independent and KM radio stations so I do understand how frustrating it is to have once broadcast live when covering election nights to now as you say talk in terms of thingy me gigies.I forget all sorts of words and often mid flow I have to picture the thing I'm talking about in my head then the word of the thing I'm thinking of comes in my mind. I simply laugh up off. I also bruise very quickly too and the bruises last much longer. Roll on remission if I'm one of the lucky ones to get there. Regards, tina
    • hilary_76724
      hilary_76724 tina-uk_cwall

      Posted

      Oh thank you. Just as I how feel. I had an afternoon programme on BBC Radio Kent covering all sorts off issues from drugs to domestic violence to a whole range of controversial subjects. Thank you for saying hello. I'll get there. Bruises and memory will improve I hope given your experience x

       

    • tina-uk_cwall
      tina-uk_cwall hilary_76724

      Posted

      Hilary, many years ago I visited bbc radio Kent in tunbridge wells as my friend had just had a book published and he was chatting about it in the afternoon show. The slot you seem to have  once had. I remember I took along a mini disc and asked the shows producer to record my friends interview. The interview was great but when I arrived back at the Canterbury station studio I was working at at the time to transfer the recording to a cd, the mini disc was empty the silly producer obviously forgot to press the record button! So my poor friend never did get to hear his interview. However, I also interviewed him for our lunchtime extended news programme, he interviewed really well, and this time he did get a copy of his interview! Regards, tina
    • hilary_76724
      hilary_76724 tina-uk_cwall

      Posted

      How long ago was that? Who was the presenter? Gosh I hope it wasn't me or one of my producers. X
    • tina-uk_cwall
      tina-uk_cwall hilary_76724

      Posted

      Hi hilary, it was 2004 and my friend is called Ed Pearce and his book is called food for thought. I don't think it was you because Hilary as a name doesn't ring a bell. Regards, tina
    • Silver49
      Silver49 tina-uk_cwall

      Posted

      I like the bit about picturing it in your head. I have a friend who also has PMR and we manage to understand each other really well. We use hand signals, descriptions and finish each other's conversation if necessary. My OH, if he comes in to the room and lingers just shakes his head and says that he can't understand what we are talking about. We assure him that we do for which he is relieved. Our conversations are not all unintelligible to others.....just in parts...... sometimes. You are not alone.
    • tina-uk_cwall
      tina-uk_cwall Silver49

      Posted

      Silver, I think other people should be forced to take evening classes in PMR. Like a French conversation class they could learn all about our world, culture and language. It won't be easy for them, but they should be forced to give it a try!!! Regards, tina
    • MrsO-UK_Surrey
      MrsO-UK_Surrey

      Posted

      "Language" class to start with Polywotsit and Giant thingy....and a few other more unmentionables! 
    • tina-uk_cwall
      tina-uk_cwall MrsO-UK_Surrey

      Posted

      Morning Mrs O, exactly, you've got the jist! Part of the course could contain trips to our houses, just like the French trips we used to take to Calais for the day. The students could watch us in action as we drop things, shake our heads rather a lot and mumble to ourselves. You know what I'm so sold on this idea I'm going to run it past the department of education after I've had my shower. Have a good day! Regards, tina
    • Silver49
      Silver49 tina-uk_cwall

      Posted

      Love your ideas. Made me laugh trying to picture the running of an evening class. They could have picture puzzles and words with spaces to try to fill in the gaps. 😀😀
    • MrsO-UK_Surrey
      MrsO-UK_Surrey tina-uk_cwall

      Posted

      I can't wait to see the reply from the Department of Education!lol

      ​And, sorry, Hilary, we've rather hi-jacked your thread, but I hope you've enjoyed the deviation!  Enjoy Madrid!

    • Oregonjohn-UK
      Oregonjohn-UK MrsO-UK_Surrey

      Posted

      Sorry Dianna, somewhat pedantic - but it’s the Department for Education (DfE).  Still brings back awful memories of the civil servant that used to give my ear a right bashing whilst I was Chair of Governors after the school was placed in ‘Special Measures’ - I believe this is what caused the start of PMR – STRESS!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Oregonjohn-UK

      Posted

      Sorry, John - you should know!wink   Sorry it's brought back the horrid memories too!  That must have been a stressful time, and I bet you're glad you're out of it.

      ​

    • Oregonjohn-UK
      Oregonjohn-UK MrsO-UK_Surrey

      Posted

      Handed over the reins as chair last year after the school came out of SM - straight back up to 'Good' - am a lot more relaxed and stress levels dropped dramatically.  My only problem now is I have started to catch up on all the jobs around the house that were left due to the effects of PMR over the past couple of years.  I did overdo it a week or so ago - during the warmer weather - it was a reminder to slow down and not rush things,  Have been quite stable on 2.5 mg for a month or so - it's looking good?
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Oregonjohn-UK

      Posted

      John, it's so easy to overdo things, especially in the garden, when the sun finally remembers it's role, but glad you didn't succumb to any long-term harm as a result - would be a shame to upset the apple-cart having successfully reached as low as 2.5mg.  Well done, and keep it up! 
    • Oregonjohn-UK
      Oregonjohn-UK EileenH

      Posted

      Sorry Eileen - I'm sticking at 2.5 at the moment as I felt a couple of small twinges and the occasional muscle ache, but nothing compared to like at the start of the PMR journey.  Taking it very very steady as I suddenly had a swelling in my left hand and it’s slightly painful, it does wear off as the day goes on.   Have an appointment to see GP next week to review everything (coming up to two years) and see if I can get some bloods done.  I’m down to just the preds and calcium, even my BP meds (prescribed 16 years ago) are still at the lower dose I started after me being on steroids 6 months in.  GP seems surprised as I had also stopped using my inhalers for Asthma after 40 years – so there is some good in either the PMR(sic) or perhaps the preds or maybe I have reduced my stress levels – cool man - so laid back I’m horizontal!
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