Today’s blog is late, and is all about me… me… me, and my dear husband and children too of course. I should have posted something before I went to see my neurologist Dr Casse at lunch time, but as I slept in I didn’t have time. I have seen Dr Casse a few times since late last year, and 6 weeks ago started to undergo a series of tests to re-assess where my dementia is at. The tests included neuropsychological assessment, and MRI and cerebral flow studies, the one where they inject you with radio-active dye and the images glow in the dark. I probably do for a few days afterwards!!
Anyway, long story short, since getting home, I my head has been spinning… Needless to say, the news was not brilliant, and although the deterioration is not desperately bad, it is significant. It was easier to cope with when I could just write about how I feel like things are changing, how my paddling is getting harder, but to hear it in the coldness of a doctors consulting room makes it so much more stark and real.
I’m quite sure my dear husband will have had a bit of head spin this afternoon too… and I suspect no amount of time in the washing machine is going to clean up my brain!!
I love your preparedness to know what is happening to your brain now, rather than putting off learning about if and/or how your brain has deteriorated. As you say Kate dear, it’s better to deal with the onset of new or increased symptoms immediately, so different therapies can be introduced if needed to halt the process. Power to your courage!
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better the devil we know than the devil we don’t…
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Medical tests rarely provide good news – doctors have to have something to justify their existence! (Sorry, flippant comment but tongue only partially in cheek). And while your news is, as you say, not brilliant, at least things have been much slower to progress than originally predicted. I’m sure that blogging and doing all the other things you do are helping to keep you above water. Long may it last! And don’t forget you are coming to France to do the Saint-Jacques walk – or at least part of it. I’m counting on meeting you then.
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Thanks Vanessa… and even if we don’t do the walk (I still can hardly manage to wear walking shoes!!), we’ll have to come to France to meet you!
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Kate, I’m so sorry that you had to hear that ……some doctors should have training on showing a little bit of compassion.
On another subject – can Tony do a post on your blog about Cymbalta – just point form on the things that have improved.
For example, this comment of his
” I am operating at about 80%, instead of about 5% [and deteriorating], as I was pre 29th June 2010.”
Does this mean that he has more energy with the Cymbalta? Because I’ve got horrific fatigue from the encephalitis and the muscle pains etc from fibro/widespread pain.
Tony’s blog has info but it’s not so easy to read and understand ….. it would be better in point form……
Tony probably doesn’t go back and reread past blog posts so he won’t see this request.
If it’s OK with you Kate could you ask Tony to post a blog post about the benefits of Cymbalta – in point form!! (i can’t understand sentences as well as point form…..)
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For a change, I have to stick up for the doctors… Dr Casse was very compassionate and caring, and spent a long time with us explaining the changes and what they mean. He has also recently referred me to a rehabilitation unit, and is now all ears regarding what other things I do to help myself. Hip hip hooray!! I’ll ask Tony about writing a more specific list up too, although I think he reads comments here as well.
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Dear iOL…..sorry my story can be a bit vague and/or confusing…….Cymbalta is not designed for or made to help Alzheimers/Demntia patients……I actually believe this drug is directed at the wrong disease…….pre its use for the Adrenalin content, I was functioning physically and mentally at about 5% of what I should have been………..after I began using Adrenalin, I was back to 80% of what I was, when functioning normally……..I don’t know about Cymbalta and it’s use in the treatment of Fibromylagia, I am an Alzheimers/Dementia victim….and am using the Adrenalin component of Cymbalta in a personal trial, with my Doctors approval, to help me survive this horrible insidious disease [AD]….and it is working….I am in control of my life once again…..and because I am, I believe my use of Adrenalin to save my life, has been vindicated………..
….the reason for my website is to explain to anyone listening or is affected by Alzheimers/Dementia, of what I have done and how it has affected me, and how my life has been extended/saved……..I realize that A/D sufferers normally don’t open websites and converse with the general public…..and this makes my story even more miraculous.!!!….
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Tanks Tony… hope this helps i0landa.
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Sending good thoughts your way, Kate.
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Thinking of you, Kate. Medical appointments are very ‘cold’ – hoping the love and warmth of your family – and the Aussie sunshine – will cheer you and help maintain your wonderful sense of humour and perspective in difficult times x
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Hi Kate, thinking of youxx
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Just wondering–how helpful is it to continue going for tests? Good that the progress is slower than predicted. x
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Not that helpful, at least not today!! hahaha… almost found my sense of humour again!!! x
We put off having them in the middle of last year, but as things were changing, I decided I wanted to know.
Also, sometimes it is re-diagnosed to a different dementia which may mean treatment, or even sometimes to something else, so it is worthwhile being retested.
On top of that, if I need to increase services, updates and referrals from our doctors are required.
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Sorry to hear this Kate.
I’m thinking of you…
Cheers Elizabeth
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Thanks Elizabeth…
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……..Dear Kate……have you spoken to your neurologist about Adrenalin ?……..
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Dear Tony… Of course, I forgot! I will ring his rooms tomorrow. would you resend your doctors details please, and what you take etc please? I don’t have AD though, so may not work… but definitely worth trying if he agrees. thanks my friend 🙂
And I’ll keep doing what I’m doing too, as it has been much slower to progress than Dr Casse predicted…
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Dear Kate……..my website has all my story and current update, worth a look by your neurologist……….. http://www.adbi.com.au
…………my Doctor’s details are on my website, but I give them to you here, also………..
……………Doctor Frances L. Robinson…..phone…[ 07 ] 3410 1155………
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thanks x
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