347 replies to this topic

[Daryl]

...that will probably be me 'if' and 'when' I spark back up again - not to mention any other orifice I could smoke from too!   

[policematrix]

good job on the giving up , i tried many times and relapsed months later thinking its ok because ive give up now ?_? 

So good job and dont give in you are not missing anything 

[Daryl]

I forgot to close this thread too -  I have realised that it was still open, and I would like, before I have the 'powers' removed from me to lock and preserve this thread.

 

From the day of my diagnosis, I started it, and having re-read it right through, it has been quite a journey hasn't it?

 

But I am now closing it, because I wouldn't want it to be used for anyone in the future to spam... I want the thread to serve as an encouragement to any member here who has their own personal demons to battle in one way or another, either physically or mentally, or with any other family or friend in their lives.

 

It's been quite a ride, hasn't it?! 

 

 

*** Thread Closed ***

[stardust]

Yearly update...

 

Daryl here - Hi all!

 

I know that I said that this thread was 'Closed' when I deactivated my account here and left as a Moderator, but since Ady kindly made this new username for me and password, I have decided, for this thread only, to keep you updated with how I am progressing with my Alzheimer's Disease and Parkinson's Disease too.

 

Looking at the date of it... there has been over a year to catch up on - I will try and get you all up-to-date with what has happened.

 

In January 2014, I was very ill and was taken into emergency respite care for two weeks - this break was well-needed and prompted my social worker to set up an action plan for me to be able to cope with things at home and on a family level, as my Mam had just been put into permanent care and I was still having to help look after my stepfather at the time, you as all of you know who has followed this thread, will understand that he has vascular dementia as well as countless physical illnesses.

 

It was decided whilst I was in respite that I would be given a 'direct payment'... this means that the social services allocates me a certain allowance each month that I can personally spend on anything to go to towards my care (obviously receipts and proof are needed for this payment - it isn't like a benefit claim). I talked over with my social worker whilst I was in Oakdene residential carehome and we decided that I have a 'support worker' out of the direct payment, come 6 hours per week, spread into two days, to help me with my money, shopping, paying my utility bills and generally help around the house for things that may be needed to get things done.

 

Jayne, my new support worker, started her job in February 2014... and I instantly realised how much help I really needed, let alone my Mam and stepdad!

 

Within a month of my support worker starting her help with me, my stepfather also got permanent care with my Mam in their carehome - and that was a massive relief, and thanks to a big part from my social worker and support worker talking at meetings with my Mam and stepdad's social worker and support team by them telling them the affect it was having on my health in general.

 

Within months I was back on top of my money, as she is very organised and helped me get into a methodical payment regime, and also to start saving... suffice to say, I have now redecorated all of my living room, laminated the floor and had a new leather settee and chair!

 

I will continue with updates here over every 3 month period, or if anything significant happens... so I hope that you will all stayed tuned with my progress for those of you that are interested.

 

Thank you once again from the bottom of my heart to all of you that have given me friendship and support throughout the years here as a member then Moderator and also when I was given news of my diagnosis of dementia and Parkinson's - you're support, love and best wishes have helped me carry on through some, difficult, challenging but also very rewarding times!

 

Love Daryl x

 

 Mam & Me Selfie.JPG   99.26KB   1 downloads

My Mam, my stepdad Mac and myself 

 

 living room Christmas 2014.jpg   23.77KB   1 downloads

My newly decorated living room and laminate flooring with new leather settee and chair

[gemini17]

Dear Daryl

 

I am so pleased that your life is filling now with so much positivity.

Real love the make over too-dead jealous!!

My home could do with a complete makeover!!!!!!!-I will hire your support worker

 

Best wishes Daryl and a happy new year to you and your family.

 

Jay x

[richy1976]

All the best Daryl, living room is lovely, can I move in lol.

[ady]

I'm still in awe the way you still put family 1st before any grief you personally have

 

That's FAR from a bad thing of course Daryl, but I just respect you so much fella for 'going-through' what you are...and still giving consideration to those close to us.

 

Some put FME and/or Gaming before their loved ones's. friends or real-life....I hope they read this today.....or in 10 years time and take that time to 'read-back' on people and they see what you are saying....and what you've done too in your life and (thankfully) shared *with us.

 

((*I tried to spell 'amongst' ) I  hope you 'get the word"..funny thing is spell-check came up with 'monster' haha)...okies I know it's still wrong  ..............Is it? DOH!

 

You are a BRICK Daryl, I have more respect for you geeze than some 'real-life' mates, that's not because of the net but as a Cyber mate you don't chat crap and If you're asked something that a mate can easily 'take the piss out you'....you dont!...........you give advice...........then 'take-the-piss' .............At least I have that little pause!!!

 

Total kudo's to you.....

 

Nicest guy I know, real-life or within the net........what more can I say?

[stardust]

Hi there...

 

...This thread will now be carried on over at DAD's FME website - I am back there on a regular basis, but I believe that a few members feathers are being ruffled because I have continued this thread here and made a New Year post.

 

I'm not bothered about them at all to be honest but I am bothered about the future of this beloved forum - I am not jeopardising that in anyway and so will continue with my journey in its new place over at DAD's as I have kindly asked him and the Admin over there and they have happily agreed that I can carry the thread on there.

 

Follow me on the journey over there if you wish too... here's the link: --> My Alzheimer's News

 

Take care,

 

Daryl x

[ady]

We are following here too Daryl x

[stardust]

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.alzheimer...documentID=2875

 

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

 

Daryl x

[ady]

You're an amazing bloke Daryl.

 

I have said that numerous time's. both here and social media.

 

You have all your own day-to-day 'problems' and I admire the way you address them....I have a 'problem' that is just so trivial in comparison yet you still spare time for friends too and 99% of the time really put peace in our minds.

 

I'm so lucky I can call you a friend, one I found within FME as well...the thousands I lost as a kid/teen (hence finding this community) was worth every penny having met a totally genuine, thoughtful and honest person.

 

Thanks for that Daryl

[stardust]

Here are some photos of the Living With Dementia magazine that I have received today of my article for Alzheimer's Disease and caring...

 

...and I've even made 'Page 3' 

 

Thank you for your continuing support and your love and best wishes throughout my journey x

 

 Living With Dementia Magazine Cover.jpg   105.65KB   1 downloads

Living With Dementia

 

 My Page 3 Moment.jpg   105.3KB   1 downloads

My 'Page 3' moment of fame...

 

 My Full-page spread.jpg   116.33KB   1 downloads

My full-page spread - don't worry... I'm not nude!

 

 The full article.jpg   139.76KB   1 downloads

The full article and brief summary

 

And for the full story - here's the link online once again below:

 

http://www.alzheimer...documentID=2875

[bri365]

well done mate. Nice article too. Keep your chin and you know where we all are if you need a chat.

[stardust]

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...

 

...be at peace Sir Terry Pratchett x

 

http://m.bbc.co.uk/n...t-arts-31858156

[stardust]

I have received a letter today from my local council housing association...

...it makes a good read!

"RENT ARREARS: £0.00

Dear Mr Lees,

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.

 

 WP_20150313_12_11_54_Pro.jpg   61.89KB   1 downloads


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!!      

[bri365]

Write back and tell them that you would like to enter into a repayment plan and can only afford to repay them £0.00 over a 36 week period.

[Marlon36]

Lol Daryl.

[stardust]

Just an update to all my friends here who may be wondering where I have gone on Facebook...

 

...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

 

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!

 

Peace and love guys

 

Daryl x

[ady]

Shame there's so many idiots who just troll mate!

 

Ta for the update.