My Alzheimer's Thread...

[Daryl]

Been to see the doctors today for my dementia review...

 ...They're quite pleased with my progress to say I've officially entered the 'moderate' stages of Alzheimer's Disease.

 My support worker came with me and they told her what needs to be done when 'the time comes' to notify them if I get any worse so as 'official procedures' are carried out for my protection!

 It felt more legal than medical - but that being said, I'm hoping that the 'solicitors' aren't needed for a long time to come yet.

 Thank you for all the love and support you give me - it keeps me going! x

[Geddy]

Thanks for keeping us informed.  I'm sure it does you good to document your dealings in a thread and it's interesting to read to boot!

[Daryl]

Two years ago today I moved into my new bungalow... BungalHome!


I haven't looked back since either - I just love it here!


Anyway, here's a couple of pictures of 'then and now'.

[Daryl]

[font='Helvetica Neue', Arial, Verdana, sans-serif]I haven't posted in this thread for a while because nothing of significance has happened in my journey with dementia...[/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]But I have been made aware by the Alzheimer's Society that conditions for people with dementia who have to go into hospital are dire, to say the least![/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]This has to change - NOW![/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Please visit the link below if you have the time and support the Alzheimer's Society by filling in the form to the head of NHS England by informing them that the conditions for inpatients with any kind of dementia has got to be improved... then email your local MP too with the same template letter that is already filled in for you to send digitally![/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]If everyone in the country could do this... I know some progress may be made - but that is wishful thinking... but if I know my friends here have done it, well I know that then that'll be an achievement! [/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]I don't want to end up in these circumstances in time to come when I have no control over my own affairs... and I certainly don't want it for my Mam and stepdad now - so even the slightest change would show that we, the people, can still make a difference![/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]There's a chart diagram chart below I've uploaded with the statistics... and the Alzheimer's Society support link is    ---> HERE <--- [/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Thanks and my love to all who have supported me in my dementia travels! [/font]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Daryl x[/font]

[Slasher]

Hi mate,

The link doesn't appear to be working. More than happy to show some support for this though when you fix it

[Daryl]

Hi mate,

The link doesn't appear to be working. More than happy to show some support for this though when you fix it

Sorry about that... I probably edited the Hyperlink wrong!

Here's the link below...

http://e-activist.com/ea-action/action?ea.client.id=153&ea.campaign.id=46238&utm_source=Facebook&utm_medium=Social&utm_content=Hospital%20Action&utm_campaign=FDC

[chasnbons]

Taken from the second paragraph.............

Alzheimer's Society has found far too many examples of shockingly dangerous and inadequate care in hospitals. Patients left disorientated and frightened, their basic needs neglected, or injured by preventable falls........

This doesn't just apply to people with Alzheimer's, with the state of the NHS it can apply to anyone who is unfortunate enough to end up in hospital these days.

It's a lottery as to whether you see, or get looked after by, an individual that ACTUALLY cares how you are. and before anyone jumps on me, I'm speaking from recent personal experiences regarding my Mum, who is normally quite fit for her age, and has zero signs of losing her faculties.

I can't say much as it's probably not advisable atm with things that are ongoing, but amongst other things, why would a doctor prescribe a medicated cream for a prolapse, which states on the tube, 'keep away from GENITALS'!!!!!!!!!!  Where did they expect her to put it for Gods sake?  Plus did they expect a cream would miraculously push everything back up where it should be?

Oh if only every hospital and doctor were like they are portrayed on Holby!

[Daryl]

Taken from the second paragraph.............

Alzheimer's Society has found far too many examples of shockingly dangerous and inadequate care in hospitals. Patients left disorientated and frightened, their basic needs neglected, or injured by preventable falls........

This doesn't just apply to people with Alzheimer's, with the state of the NHS it can apply to anyone who is unfortunate enough to end up in hospital these days.

It's a lottery as to whether you see, or get looked after by, an individual that ACTUALLY cares how you are. and before anyone jumps on me, I'm speaking from recent personal experiences regarding my Mum, who is normally quite fit for her age, and has zero signs of losing her faculties.

I can't say much as it's probably not advisable atm with things that are ongoing, but amongst other things, why would a doctor prescribe a medicated cream for a prolapse, which states on the tube, 'keep away from GENITALS'!!!!!!!!!!  Where did they expect her to put it for Gods sake?  Plus did they expect a cream would miraculously push everything back up where it should be?

Oh if only every hospital and doctor were like they are portrayed on Holby!

I totally agree and concur that this kind of thing just doesn't happen to people with dementia...

But people who aren't in the later stages of the condition can at least voice their opinions, like we are here, if things go wrong - and try and sort it at source if confronted properly.

People, like my Mam, for instance, just wouldn't have a clue, as she can hardly say a sentence now without forgetting what she is on about (I am knowing that feeling well now too) - and therefore can't express herself like people with their faculties about them.

As dementia is mainly an elderly person's condition anyway - even the elderly with their faculties tend not to say anything, because 'it just isn't done to speak to your doctor like that' mentality.

Sadly, if more people had spoke like that to them in the past, I believe that some of the situations we find ourselves in now, might not have been like it... but that is just part of the whole problem with our NHS nowadays.

[chasnbons]

Totally agree with you Daryl.

My Mum DID voice her concerns about things, but they fell on deaf ears.  Whether it be down to incompetence, disinterest or a basic lack of compassion for their patients, nothing was done and she gradually has gotten worse. So..............

At this point I stepped in, and OMG were they sorry!

The catalogue of one disaster after another has been spelled out to them, with all the usual excuses being given, too busy, lack of cover, wrong doctor for one of the conditions that my Mum has, etc etc etc, the list goes on.

I listened patiently for a good 15 mins, and then when asked if I felt better about the things that had happened, they got both barrels, culminating in them being told that we would be taking things further and that I wouldn't rest till someone/some people had been brought to task regarding the whole fiasco.

This is where we are up to as I type this, formal complaints procedure has been started via different , my parents have changed their GP. (another complete waste of space wanker) so we now have to wait for the wheels to start turning, although no doubt they will do so very slowly.

[Daryl]

With all what has been going off in the world of politics...
 
I forgot to post that it was 5 years ago on 23 June that I had my diagnosis for early onset Alzheimer's Disease...
 
Right thread to say that, I suppose!

[Slasher]

Is it bad that when I saw a new post here I thought "shit, forgot to look in that thread for ages, hope I haven't missed much"?

[Daryl]

Is it bad that when I saw a new post here I thought "shit, forgot to look in that thread for ages, hope I haven't missed much"?

There's only two pages on my posts... and I certainly wouldn't want to release to any of you what I've got in this thread

So there's certainly no guarantee date from me...

[Daryl]

Dementia Dilemma:

I have had a letter and email telling me that I have been qualified to take part in a new course in a clinical trial for Alzheimer's Disease - with a medication other than my Aricept that I take now.

Here's the link:  http://www.alzheimersglobalstudy.com/en-us/

It is  also in the UK. I haven't made my mind up yet and have got to telephone them back to tell them whether I should go forward into the trial.

It is NOT a cure, but it is proving on some people to have a slowing down of the chemicals that attack the brain (called 'plaques') and thus reduces them, without getting rid of them completely. It can also, in certain people, have no effect at all, and in a few more, can aggravate the dementia problems and make them much worse than they are in a fewer patients.

I am at a loss on what to decide... It is a very exciting step (but I now it isn't  cure), but then I think it could be a very dangerous step because it could have negative results to how I am now.

I am ticking by with my dementia (early onset Alzheimer's Disease) - I was diagnosed with it 5 years ago now and in the moderate stage of the condition. I function OK - in that good, with the help of my support worker and the services the social services have given me and although yes I m getting more forgetful, speech is stuttering and my walking and cognition is getting slower, I'm quite happy with my last dementia review.

Should I continue with this very slow deterioration with my condition which is getting me by nicely with the help of Aricept since my diagnosis in June 2011 - or go for the new clinical trial with the chance of it either slowing down my dementia much more, or risk a worse intervention taking the new drug along with Aricept and perhaps send me to 'ga-ga' land much quicker than if I don't take part.

I know it is my decision and mine alone - but I would like to hear from my dear friends as to what they think before I go ahead and make the decision and commit myself.

Let me hear from you all, my lovely family friends with your opinions on this and take a look at the link what it is about: http://www.alzheimersglobalstudy.com/en-us/


Love you all xx

[Slasher]

If it was me, I would probably take it - but then I'm an animal - I like being a bit of a guineapig with trying out new things.

It's your decision at the end of the day mate - go with what you feel is best.

[Daryl]

I didn't go along with the trial... there were far too many unanswered questions.

There already is with this illness, the it is 'better the devil you know' if you understand what I mean, that take a leap into the unknown and be unsure whether you've done the right thing or not... if in doubt, DON'T!