DADsFME

Miscellaneous => The Lounge => Topic started by: Daryl on Jan 13, 2015, 02:44 PM

Title: My Alzheimer's Thread...
Post by: Daryl on Jan 13, 2015, 02:44 PM
Hi all,

Following on from the old thread I had over at Fruit Emu, I have asked and kindly and happily been told to carry my journey through dementia here on DAD's FME...
...As I am back here this now seems the logical step to make - and clears the clutter from Fruit Emu and also a breather for a few members whose feathers I seem to have ruffled by signing up here.

For you all to get the gist of my journey with Alzheimer's Disease, I will link you to the very fist page of the thread I made on the day I went to the Queen's Medical Centre, Nottingham and got the diagnosis... and how I 'came out' to you all with my condition.

There's a lot to get through if you're new to reading it, but hose who have followed me on the journey, my friends within the FME community especially, will now just be able to keep up-to-date here.

Thanks guys - enjoy the ride with me! :)
Daryl x


The link is here: -->  My first post in the thread 'My Alzheimer's News' (http://www.fruit-emu.com/forums/topic/30610-my-alzheimers-news/)

( edited by Daryl: missing the paragraphs again ;) )
Title: Re: My Alzheimer's Thread...
Post by: Geddy on Jan 13, 2015, 02:53 PM
Will be good to view the continued story..... just remember where you post :P
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 30, 2015, 01:59 PM
My 'Andy Warhol' 15 minutes of fame...

...I've made the Alzheimer's Society 'Living With Dementia' magazine with my support worker describing life as both a carer and sufferer of the condition.

The photos don't do me any justice at all... but I hope my story can give encouragement to those who are diagnosed or care for people with dementia. :)

Anyhow, here's the link below:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2875

Enjoy - and thanks to everyone who continues to give me support here,

Daryl x
Title: Re: My Alzheimer's Thread...
Post by: DAD on Jan 30, 2015, 02:26 PM
Thanks for sharing that Daryl :)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Feb 04, 2015, 12:44 PM
Here are some photos of my article from the Living With Dementia magazine that I have had delivered today...

...I've even made 'Page 3' :P  :tts



Title: Re: My Alzheimer's Thread...
Post by: DAD on Feb 04, 2015, 12:55 PM
Fame at last :D
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Feb 12, 2015, 09:45 PM
I've had my Mam and stepdad visit today, with the help of my support worker...

...they were very pleased with the article in the 'Living With Dementia' magazine about them both too - so my support worker got us all to pose for a photo of the occasion!

I naturally enjoyed the publicity! :P

Title: Re: My Alzheimer's Thread...
Post by: Daryl on Mar 12, 2015, 03:38 PM
[font='Helvetica Neue', Arial, Verdana, sans-serif]Very sad news today that the inspiration this man gave me to fight the battle with good humour and a strong determination to get through things has passed away...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...be at peace Sir Terry Pratchett x[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]http://m.bbc.co.uk/news/entertainment-arts-31858156[/font]
Title: Re: My Alzheimer's Thread...
Post by: barcrest junky on Mar 12, 2015, 07:34 PM
Quote from: Daryl on Mar 12, 2015, 03:38 PM[font='Helvetica Neue', Arial, Verdana, sans-serif]Very sad news today that the inspiration this man gave me to fight the battle with good humour and a strong determination to get through things has passed away...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...be at peace Sir Terry Pratchett x[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]http://m.bbc.co.uk/news/entertainment-arts-31858156[/font]

Yes, RIP Sir Terry. I am currently working my way through Discworld series. Excellent books.

bj
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Mar 13, 2015, 12:41 PM
I have received a letter today from my local council housing association...

...it makes a good read!

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]"RENT ARREARS: £0.00[/font]

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]Dear Mr Lees,[/font]

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]I am writing to advise you that your rent account is in arrears.

£67.43 Rent
£67.43 Housing Benefit (Secured) deduction
£ 0.00 Arrears


The payment of £0.00 is due immediately.

Your right to live in your home could be put in jeopardy if regular rent payments are not made on time.


How the hell can I pay NOTHING?

Now I know I'm losing it a little bit - but good gawd, even I'm not that thick to waste council money...

...I wonder how many other people have received them... and vulnerable people panicking in case they think they are going to be thrown out their homes!

The mind boggles!!  :o :o [/font]
Title: Re: My Alzheimer's Thread...
Post by: Geddy on Mar 13, 2015, 03:09 PM
Write them a cheque for £0.00 and charge them £15 for the letter..... turds...
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Apr 17, 2015, 10:49 AM
[font='Helvetica Neue', Arial, Verdana, sans-serif]Just an update to all my friends here who may be wondering where I have gone on Facebook...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...well just that - I have deactivated my account after nearly 8 years and I am on Twitter (which I have had equally as long) with my Twitter username as @daryl2510[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]I had a very 'untrustworthy' friend on there and after that, because I couldn't find out who it was who had done what they did - decided to go and to be honest, I feel much freer of it all! :)[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]Peace and love guys[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]Daryl x[/font]
Title: Re: My Alzheimer's Thread...
Post by: Geddy on Apr 21, 2015, 11:11 AM
Block the arse hole who did it and get back on FB!!!
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Apr 26, 2015, 09:11 PM
Quote from: Geddy on Apr 21, 2015, 11:11 AMBlock the arse hole who did it and get back on FB!!!
...I have and I am! :P
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jun 25, 2015, 10:11 PM
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 at Fruit Emu I had a lovely three years... I don't regret one minute of it either. The support from the vast majority of the members 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.
 
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
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jul 07, 2015, 09:06 PM
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
Title: Re: My Alzheimer's Thread...
Post by: Geddy on Jul 08, 2015, 09:27 PM
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!
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Oct 12, 2015, 01:47 PM
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'. :)

Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 19, 2016, 12:56 AM
[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! (http://www.fruit-emu.com/forums/public/style_emoticons/default/smile.gif)[/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 <---  (http://"http://I%20haven't%20posted%20in%20this%20thread%20for%20a%20while%20because%20nothing%20of%20significance%20has%20happened%20in%20my%20journey%20with%20dementia... %20But%20I%20have%20been%20made%20aware%20by%20the%20Alzheimer's%20Society%20that%20conditions%20for%20people%20with%20dementia%20who%20have%20to%20go%20into%20hospital%20are%20dire,%20to%20say%20the%20least! %20This%20has%20to%20change%20-%20NOW! %20Please%20visit%20the%20link%20below%20if%20you%20have%20the%20time%20and%20support%20the%20Alzheimer's%20Society%20by%20filling%20in%20the%20form%20to%20the%20head%20of%20NHS%20England%20by%20informing%20them%20that%20the%20conditions%20for%20inpatients%20with%20any%20kind%20of%20dementia%20has%20got%20to%20be%20improved...%20then%20email%20your%20local%20MP%20too%20with%20the%20same%20template%20letter%20that%20is%20already%20filled%20in%20for%20you%20to%20send%20digitally! %20If%20everyone%20in%20the%20country%20could%20do%20this...%20I%20know%20some%20progress%20may%20be%20made%20-%20but%20that%20is%20wishful%20thinking...%20but%20if%20I%20know%20my%20friends%20here%20have%20done%20it,%20well%20I%20know%20that%20then%20that'll%20be%20an%20achievement!%20:) %20I%20don't%20want%20to%20end%20up%20in%20these%20circumstances%20in%20time%20to%20come%20when%20I%20have%20no%20control%20over%20my%20own%20affairs...%20and%20I%20certainly%20don't%20want%20it%20for%20my%20Mam%20and%20stepdad%20now%20-%20so%20even%20the%20slightest%20change%20would%20show%20that%20we,%20the%20people,%20can%20still%20make%20a%20difference! %20There's%20a%20chart%20diagram%20chart%20below%20I've%20uploaded%20with%20the%20statistics...%20and%20the%20Alzheimer's%20Society%20support%20link%20is %20 %20--->%20HERE%20<--- %20%20Thanks%20and%20my%20love%20to%20all%20who%20have%20supported%20me%20in%20my%20dementia%20travels! %20%20Daryl%20x")[/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]
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jan 20, 2016, 08:46 PM
Hi mate,

The link doesn't appear to be working. More than happy to show some support for this though when you fix it :)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 20, 2016, 09:35 PM
Quote from: Slasher on Jan 20, 2016, 08:46 PMHi 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! :P

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
Title: Re: My Alzheimer's Thread...
Post by: chasnbons on Jan 21, 2016, 06:47 PM
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!
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 21, 2016, 11:18 PM
Quote from: chasnbons on Jan 21, 2016, 06:47 PMTaken 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.
Title: Re: My Alzheimer's Thread...
Post by: chasnbons on Jan 22, 2016, 09:32 AM
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.
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jun 30, 2016, 08:36 PM
With all what has been going off in the world of politics...
 
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!
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jun 30, 2016, 09:05 PM
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"?
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jun 30, 2016, 10:27 PM
Quote from: Slasher on Jun 30, 2016, 09:05 PMIs 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... ;)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Sep 11, 2016, 11:21 PM
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/ (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/ (http://www.alzheimersglobalstudy.com/en-us/)


Love you all :) xx
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Sep 11, 2016, 11:37 PM
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.
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Dec 04, 2016, 02:40 PM
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!
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Dec 04, 2016, 03:13 PM
Hi Daryl, I was just thinking the other day about that and wondering if you were going to do the trial.
Thanks for letting us know and you're spot on about the 'better the devil you know' I often use that phrase.  :)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 01, 2017, 09:17 PM
Happy New Year everyone...

I hope that you all have a peaceful and happy one... I certainly hope that my start to the new year doesn't begin as it ended over the last few weeks!

My Mam was rushed into A&E about three weeks before Christmas with pneumonia... I rushed to the hospital to be with her, forgetting to take my own meds and was there over 12 hours with her, before my stepsister came to bring us back home... She was released home under the care of the staff at her carehome, otherwise they were going to keep her in hospital but heavily sedate her because of her advanced Alzheimer's Disease - it was an easy decision for me to make to let her go back home, as I believe that she would've died in hospital under sedation, trying to clear her airways of  the infection.

About a week later, I started to feel unwell... I shrugged it off as a heavy cold at first because that is what it just felt like - but then a few days before Christmas I was having to be laid up in bed, not being able to move and totally feeling as if I wasn't in my body at all... I felt awful. I shrugged it off after a few days because Christmas was coming and I went to my nephew's house to be with the kids for the festive holidays - feeling dreadful, but a bit more functional than I had felt for a few days.

However, a couple of days before New Year's Eve, I went to the shop and when I got in again, I passed out and when I came round my nephew had come and somehow managed to get me into bed... It is a good job he was coming that day otherwise how long I would've been on the floor, no one knows!

He managed to get me an emergency appointment at my GP surgery on 30 December, and my GP said that I had pneumonia and had had a flu virus, and that I should've gone to have seen him much before I did (which is contradictory at my GP surgery as you have to be dead usually for a fortnight before you get an appointment ;) ).

Anyway. I have been put on two lots of antibiotics and have got to have an ECG and full blood tests next week, as it has had an affect on my heart with all the fluid (which I thought was just snotty cold lol).

Hopefully I will be on the mend soon...

Take care, Daryl x
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Jan 08, 2017, 03:37 PM
Sorry to read you haven't been well Daryl, hope you are feeling better bud X
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 08, 2017, 04:20 PM
Quote from: Marlon36 on Jan 08, 2017, 03:37 PMSorry to read you haven't been well Daryl, hope you are feeling better bud X

Thanks mate... I'm getting there :) x
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jan 15, 2017, 12:20 PM
Hope you're feeling better mate. If not, wtf are you playing at? Hurry up and get better damnit
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 25, 2017, 01:54 PM
Former Prime Minister David Cameron has been made President of the Alzheimer's Research UK...

http://www.alzheimersresearchuk.org/

I'm not commenting politically mind...  :-X
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jan 27, 2017, 10:05 AM
Oh dear. No doubt there will be a cure found and he'll block it from getting anywhere, the greedy twat.
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jan 27, 2017, 10:18 AM
Haha there's a massive shit storm stirring on twitter. At least 90% of the comments are unhappy ones
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 27, 2017, 08:45 PM
Quote from: Slasher on Jan 27, 2017, 10:18 AMHaha there's a massive shit storm stirring on twitter. At least 90% of the comments are unhappy ones
Understandable... Especially if a lot of them has had to go through what I did when he was PM  >:(
Title: Re: My Alzheimer's Thread...
Post by: Slasher on Jan 28, 2017, 02:53 AM
The Facebook 1 star reviews are also pouring in. They'll lose big time for this imo
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Jan 28, 2017, 07:27 AM
Quote from: Daryl on Jan 27, 2017, 08:45 PMUnderstandable... Especially if a lot of them has had to go through what I did when he was PM  >:(

Yep, I remember you saying at the time about that. It was bloody disgusting what they put you through!
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Feb 02, 2017, 11:47 AM
Quote from: Daryl on Jan 25, 2017, 01:54 PMFormer Prime Minister David Cameron has been made President of the Alzheimer's Research UK...

http://www.alzheimersresearchuk.org/

I'm not commenting politically mind...  :-X


Hey Daryl, just had a thought, it could've been worse, you could of ended up with frigging Osborne!! :P
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Feb 02, 2017, 07:18 PM
Quote from: Marlon36 on Feb 02, 2017, 11:47 AM
Quote from: Daryl on Jan 25, 2017, 01:54 PMFormer Prime Minister David Cameron has been made President of the Alzheimer's Research UK...

http://www.alzheimersresearchuk.org/

I'm not commenting politically mind...  :-X


Hey Daryl, just had a thought, it could've been worse, you could of ended up with frigging Osborne!! :P
There would've been anarchy on the streets within a month - and a revolution within a year! ;) lol x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Mar 30, 2017, 11:17 PM
I have been having a foot complaint called plantar fasciitis. It is very painful and after three months of trying anti-inflammatory medication (and a course of tablets to cover the heartburn they give), along with a gel heel instep for both my shoes, trainers and slippers, and foot exercises, it hasn't improved.
 
Today I have had to have the next course of treatment - a steroid injection, with the needle buried deep into my left heel, whilst my GP twisted the needle around to get the steroid fluid all around the plantar fasciitis area. It was extremely painful, the foot is very sore, tender, bruised and swollen where the needle has gone in but hopefully, my GP says, it will only last a couple days and I'm to rest as much as I can in those 48 hours.

(http://www.fruit-emu.com/forums/uploads/monthly_03_2017/post-42447-0-87374900-1490911958_thumb.jpg)
The swelling and bruising on my heel after the injection with the needle point of entry at top!

The long-term affects of it however I hope will be worth that excrutiating 1 minute whilst the injection was inserted into my foot and it will help me to get a little more mobile, as I don't like being told that plantar fasciitis is 'wear & tear for my age' - I'm only 51!
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Mar 31, 2017, 07:51 AM
Wow, that's one hell of a prick. Take it easy mate, if you're not mobile for a couple of days and get a bit bored - you can always tell some of yer dirty jokes on here!  ;) x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jun 23, 2017, 01:35 PM
Sixth year diagnosis anniversary...

It is six years ago today that I went to the QMC hospital in Nottingham and was diagnosed with early-onset Alzheimer's Disease.

But given the fact that I was put on medication for the condition straightaway, and also knowing what entails with this illness, I took steps to try and safeguard my future as much as I could, and got support care in place. It is needed now and has been increased to 6 hours... But I'm still here, able to type and communicate with you all, remembering the lovely friends that I have made on the FME forums and still moaning! And to boot, we have seen the release of the new MFME emulator which we all thought was going to be wishful thinking.

Here's to the next six - hopefully!

Love and peace,

Daryl x
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Jun 24, 2017, 06:32 AM
Bless you Daryl and well done mate, you always have a positive attitude - inspirational.

It's always a pleasure seeing you post on these forums. I've seen when people are going through a rough time you will post some excellent advice. That's the kind of guy you are, fan-bloody-tastic!!

Long may you be posting for many more years to come!  :)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jul 04, 2017, 01:05 PM
Big update...

Just to let you all know - I shall be leaving 'BungalHome' and moving back to Kirkby due to my conditions not getting better (obviously) with better transport options nearby, much nearer my immediate family (next street) and also in familiar surroundings - because...

I'm moving back to Sycamore Avenue, my old street I lived on before I moved - and one number up - I'm going to be living at number 22 instead of 21...

How weird lol

Peace and love,
Daryl x
Title: Re: My Alzheimer's Thread...
Post by: Geddy on Jul 06, 2017, 02:40 PM
All the very best young fella.  It will be good to be back home.  Hopefully one day I can make it back there...
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jul 12, 2017, 05:34 AM
Spent my first full day in the new flat yesterday - my goodness it was hectic!
 
There from 8am in the morning waiting for the council landlords to switch on my supplies - only to find out that British Gas hadn't activated my account, as promised, four days before! They had to do it over the telephone for me, as the electric and gas engineer were none to happy with their shenanigans! 
 
Then I actually got on to my TV, internet and telephone at 9pm at night as Virgin Media had said with a callout that everything was in place for me just to connect my gear up - only it wasn't... they had forgot to give me the co-axl cabling to put in the back of the new connection on my Virgin Media equipment!
 
Anyway, all settled and went to bed, waking up with a start every now and again, wondering what the light shadows were that occasionally came over my bedroom (thought my dementia was kicking in) - only to realise that it was car headlights coming down the road opposite my bedroom window! 
 
I've lived a sheltered life in my old bungalow these past four years!  :o



Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Jul 15, 2017, 06:13 AM
Hope that you're settling well in your new flat Daryl, it's good that you've moved nearer to your family  :) x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jul 21, 2017, 12:37 PM
The bungalow had it's final inspection and passed... The keys to the place were handed to the housing inspector.

'BungalHome' is officially no more!

A little emotional - but onwards and upwards... I have a new home, right where it should be (with family and connections) and will dedicate as much to it as I did the bungalow!

Peace and love,

Daryl x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Aug 01, 2017, 10:38 PM
What a day!

I'm going to write it down on Facebook for my own posterity - let alone tell you of officialdom incompetence...

First off - got a letter from Ashfield District Council stating that I hadn't informed them I had changed address and they had therefore stopped my council tax benefit - only in the next paragraph to be told that my housing benefit had been adjusted because I had changed address!

To top that off, I have had British Gas gas engineer visit twice today, along with Ashfield District Council gas engineer three times trying to sort my gas out - turns out my gas meter fitted just three weeks ago has stopped working and the council engineer couldn't put right an 'at risk' fault that had been passed previously by a council gas engineer and then declared at risk by British Gas - only to turn out the British Gas engineer had fitted an 'at risk' meter in the first place that had put my 'at risk' boiler faulty in the first place!

The end result... I still haven't got any gas because British Gas gas engineer has decided to cap off the new gas meter because it is 'at risk' until the gas engineer from the council has passed it as safe - that isn't until Friday!

...and I'm the one with dementia!!!  >:( >:( >:(
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Aug 10, 2017, 03:29 PM
Sad news to report today...

My darling stepfather Mac has passed away after a very long illness.

He was 74 years old, bless him - he had dementia and has died of pneumonia.

Be at peace 'Dad' xxx
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Aug 11, 2017, 06:32 AM
Very sorry to hear about your sad news Daryl. My deepest condolences to you and your family mate xx
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Sep 21, 2017, 05:33 PM
World Dementia Day today...

Don't forget!  ;)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Sep 22, 2017, 07:51 PM
I've buried my stepdad's ashes in the town's cemetery today...

Finally at peace, after a long battle with dementia and physical illnesses, so a blessing now we can move on.

Love him and miss him loads xx
Title: Re: My Alzheimer's Thread...
Post by: Marlon36 on Sep 30, 2017, 05:48 AM
Hope you're doing OK, Me Duck! :)
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Sep 30, 2017, 12:36 PM
Quote from: Marlon36 on Sep 30, 2017, 05:48 AMHope you're doing OK, Me Duck! :)
I'm doing fine... you know me ;) x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Oct 09, 2017, 10:07 PM
Dementia Poem:
==========

Walk a while with me my friends, walk with me today.
Come and see what I see, and listen to what I say.

Yes, I have dementia, and sometimes it get worse.
Please be very grateful that you don't have this curse.

But are we all that different, the likes of you and me?
We breathe the same, we feel the same, the same things we all see.

The only difference is my friends, I don't feel that well.
When I don't remember everything that you tell.

My heart beats just as quick as yours, my blood runs just as fast.
But because of my dementia, a shadow it does cast.

It's the shadow cast by others, that takes away my light.
It turns my life into darkness, my pleasure into fright.

For when you cast that shadow, and it comes my way.
It drains me of my energy, makes me hide, or run away.

Sometimes I do things differently, and my mind is not my own.
But do YOU never talk to yourself, when you are alone?

So am I all that different, the likes of you and me.
So my friends, come walk a while, the future is you and me!
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jan 17, 2018, 10:05 PM
It was my friend's funeral from the dementia group I was in when we were first diagnosed today...

He chose his own time to leave, like 'thunderstorm' did - and who am I to criticise them for doing it.

I hope he is now at peace x
Title: Re: My Alzheimer's Thread...
Post by: Daryl on Jun 12, 2018, 08:56 PM
7th dementia anniversary
====================

Well... it is on this day in 2011 ( 7 years ago) that I went to the QMC hospital in Nottingham and was given the diagnosis of early onset Alzheimer's Disease (dementia).

I've been a long way, both physically and mentally, since that day, but I've gotten by with the love and support of my immediate family and a few very good friends... and the support of the majority of my friends here on the forums too.

I'm still active here... I intend to still remain active as long as I can even though physically and mentally it is getting a little more difficult to do.

...you won't get rid of me that easily! 

Thank you all for your support, it'll always mean a lot x