347 replies to this topic

[samson81]

sorry to hear that Daryl,

 

hope all is ok with you mate ?

 

I haven't been around much here or Facebook as I broke my arm a few months ago and I'm still nursing it now :-/

[stardust]

sorry to hear that Daryl,

 

hope all is ok with you mate ?

 

I haven't been around much here or Facebook as I broke my arm a few months ago and I'm still nursing it now :-/

 

I hope that you're on the mend buddy and are fighting fit soon enough... take care my friend x

[stardust]

An update

 

It is 4 years ago on Tuesday that I was diagnosed with early onset Alzheimer’s Disease…

 

Not a big thing now, as I’m used to it – but it came like a bolt of lightning from the gods when I was given the diagnosis at the Queen’s Medical Centre in Nottingham.

As a carer for my Mam and stepdad who are both now in the latter stages of the illness, the enormity of realising my fate, coupled with the fact that I was still helping to care for them, left me in a very dark place indeed.

 

However, after the help from the social services and teo lovely social workers – coupled with the help I now receive from my support worker for 6 hours per week… and my Mam and stepdad both now safely in full-time care at their nursing home, I am in as good a place as anyone can be with our condition… and I also know that when the time comes that I myself am unable to make decisions for myself, my support worker and framework structure will make sure that steps are taken to protect my interests and well-being.

 

I am now officially entering ‘moderate stage dementia’ whatever that is supposed to mean – I can still do things for myself, to an extent physically because of the secondary condition caused by my dementia, Parkinson’s Disease… I can still communicate, type (although my writing has gone downhill fast, both in legibility and spelling – on computers you can use a spellchecker), access the internet and use my computers and devices and also go out with my support worker – but the day-to-day things that people take so often for granted have all but gone for me.

 

Remembering peoples’ names, stuttering when talking, trying to say the right words, but getting them twisted as I’m trying to communicate them – remembering to take my medications without alarms going off on all my computers, devices and phones – are all commonplace – you get used to it – and the stark fact of the matter is that you have too – because there is nothing you or the medical world can currently do to stop the onslaught of gradually losing everything that makes you… you!

 

I’m in a good place though, both physically (to an extent) and mentally (to an extreme)  – and I know that my future is secure with the help that I have – so I can go into ‘oblivion’ when the time comes and not really worry or care about it anymore!

 

We lost a good friend here with the same condition, and despite our efforts to help him through, he took a different route from me... I hope Neil (thunderstorm) found the peace he was looking for - be at peace buddy. x

 

I too could've easily have taken the route he did... But I didn't because I didn't want too - AND the fact that so many of you here have been so supportive to me since I 'came out' in this thread all those years ago now and told you the day I was diagnosed with the condition. Your love, best wishes and cheering me on is one of the main reasons that I can still function now... That and lovely visits by a few FME members to see me personally to make sure I'm alright as been the reason for me to soldier on ( and to pester those of you who don't necessarily 'share' my point of view on occasions )

 

As a Moderator here, I had a lovely three years... I don't regret one minute of it either. The support from the vast majority of you was incentive enough, but as time progressed, along with my condition, I knew it was time to 'get off the boat' so I left completely - but sorry and all that, you just can't keep an old dog down, so back I've come as a completely 'new' member because I deactivated my old account - it is staying that way too... This is the new me, I'm as rare as 'Stardust'!

 

So there you have it, after a long ramble that no doubt even you have forgotten reading, like I've forgotten what I have put!

 

Keep up your support, your love and best wishes to me and keep supporting the dementia services... It is an illness that is becoming far too common, and not just for the elderly either!

 

Peace and love, as always guys

 

Daryl xx

 

Edited by stardust, 25 June 2015 - 08:33 PM.

[letmein]

Not a joke.. 

 

A young woman approached me in my local town of Ponypridd on Wednesday, looked me straight in the eye and said..

I have just presented the British medical board with a cure for Alzheimer's, you take a male doc leaf and breed it with a female leaf,

I quickly realised she had an obvious mental condition...BUT just for a second I thought if ONLY it was that simple,

It probably is, humanity just has to find that elusive solution, so we can finally beat this awful condition that effects so many of us.

 

I too have family members with this frustrating condition, and have experienced the gradual progression into, as you say "oblivion",

thoughts are with you always.

 

M

[policematrix]

Not a joke.. 

 

A young woman approached me in my local town of Ponypridd on Wednesday, looked me straight in the eye and said..

I have just presented the British medical board with a cure for Alzheimer's, you take a male doc leaf and breed it with a female leaf,

I quickly realised she had an obvious mental condition...BUT just for a second I thought if ONLY it was that simple,

It probably is, humanity just has to find that elusive solution, so we can finally beat this awful condition that effects so many of us.

 

I too have family members with this frustrating condition, and have experienced the gradual progression into, as you say "oblivion",

thoughts are with you always.

 

M

 A study published in The Journal of Neuroscience examined the biochemical events in both acute neuronal damage and in slowly progressive, neurodegenerative diseases. They conducted a magnetic resonance imaging study that looked at THC (the main active compound in marijuana) and found that it reduced neuronal injury in rats. The results of this study provide evidence that the cannabinoid system can serve to protect the brain against neurodegeneration.

 

Its in the early stages but this is very promising, as a protector of the brain from such diseases, but maybe even one day a cure or at least stop it getting worst.  

 

@Daryl

I shed a tear reading your latest post, makes me sick that more cant be done.

Like you say you loose YOU which I cant imagine and must be insanely difficult to cope with, If I could do anything I would and all I can say is peace and love to you, you are one of the strongest people I ever met, wish you luck my friend.  

Edited by policematrix, 26 June 2015 - 09:10 AM.

[nails]

thinking of you daryl

[stardust]

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

[stardust]

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

 

I love the place so much... I wouldn't be anywhere else.

 

Anyway, below is a 'then and now' photo

 

 

THEN:

 

 1380108_10152021449756802_190141970_n.jpg   58.77KB   1 downloads

 

 

 

NOW:

 

 12141810_10153796561261802_2704311241430559916_n.jpg   21.71KB   1 downloads

[letmein]

Nice, glad you kept that fireplace!

 

 

M

[ricardo de ponsa]

Nice, glad you kept that fireplace!

 

 

M

Yes, always a pleasure to view a Neo Classical / Art Nouveau artifact in a 20th Century Design.

 

Plus it keeps you warm in the Winter!!!!

 

RDP.

[stardust]

Yes, always a pleasure to view a Neo Classical / Art Nouveau artifact in a 20th Century Design.

 

 

 

whatever that means - it would just make a mess to rip it out...

 

It only contains a standard council electric fire!

[mabby2000]

Hi daryl, your living room looks much better.

A couple of fruit machines will complete the room!

Cheers.

[New Cross Roar]

A relative suffers with this and it's a nasty little disease to pick up.     You normally associate it with older people but it can develop at a much earlier stage.   Horrible to have your memory erased to such an extent and to become mentally incapable when it develops beyond a certain stage.     Ok new here and don't know everyone as much as the next, but was sorry to read about what occured to the OP and offer support and encouragement.    

[barcrest junky]

A relative suffers with this and it's a nasty little disease to pick up.     You normally associate it with older people but it can develop at a much earlier stage.   Horrible to have your memory erased to such an extent and to become mentally incapable when it develops beyond a certain stage.     Ok new here and don't know everyone as much as the next, but was sorry to read about what occured to the OP and offer support and encouragement.    

 

He says he has Alzheimers, but he's got a mind sharper than a bacon slicer sometimes  

[stardust]

A relative suffers with this and it's a nasty little disease to pick up.     You normally associate it with older people but it can develop at a much earlier stage.   Horrible to have your memory erased to such an extent and to become mentally incapable when it develops beyond a certain stage.     Ok new here and don't know everyone as much as the next, but was sorry to read about what occured to the OP and offer support and encouragement.    

 

...my mum and stepdad have it and are in a carehome - my grandmother had it, as does my mum's sister - three of my late father's brother and sisters all had it too - I was doomed from birth!

 

 

He says he has Alzheimers, but he's got a mind sharper than a bacon slicer sometimes

 

 

...you know me too well!

[stardust]

I haven't posted in this thread for a while because nothing of significance has happened in my journey with dementia...

 

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!

 

This has to change - NOW!

 

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!

 

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!

 

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!

 

There's a chart diagram chart below I've uploaded with the statistics... and the Alzheimer's Society support link is    ---> HERE <--- 

 

 12615558_10153782391199647_924703969734516298_o.jpg   67.47KB   1 downloads

 

Thanks and my love to all who have supported me in my dementia travels! 

 

Daryl x

[stardust]

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!  lol

Edited by stardust, 30 June 2016 - 05:57 PM.

[bri365]

Hope you are well.

[stardust]

Hope you are well.

 

I'm fine buddy - as well as can be lol - hope you are too x

[stardust]

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.alzheimer...tudy.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.alzheimer...tudy.com/en-us/

 

Love you all xx

Edited by stardust, 11 September 2016 - 09:54 PM.