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Newbie here with early onset Alzheimer's Disease

Daryl2510

Registered User
Hi all,

I hope that I have posted in the right section. :)

In June 2011, I was diagnosed with early onset Alzheimer's Disease... I was 45 years old. It really didn't come as a shock to be honest, because my family and I had been recognising the signs, because my mum is in the later stages of the disease and my grandma died with Alzheimer's Disease related symptoms too. What did come as a shock, was the early progress of the disease in me - my mum is elderly and my grandma was in her late 70s when the illness hit her too.

What makes it all a strain is that I am also the carer for my mum, and to top it all, this year her husband, my stepfather, has been diagnosed with the first stages of vascular dementia. In March, I had to take the drastic action of putting my mum into emergency respite care, as my stepfather was suffering terrible dillusions with his illness. It broke my heart when I made her social worker enforce the act, and when I had to leave her there, but I knew it was for the best. It was by sheer hard work between me and my stepsister, that luckily, the very next day, we managed to also get my stepfather put into respite care with her, so they were back together. This settled my mother, and helped my stepdad in his recovery.

They are now both back at home, with a care plan set in place for carers to call on them four times a day, for washing, cooking, hygiene and cleaning (my mother and stepfather pay for this too) and it gives me some relief, but to be honest, this last year has been a nightmare, not only with my diagnosis, but with having to be a carer to to my mother and stepfather with dementia as well.

I now have some time to think about my health. Along with other illnesses, my Alzheimer's Disease has caused me to have to readjust my life completely. I have been on a cognitive stimulation therapy course, and go on another one at the end of next month, but there really isn't much available for people with working age dementia and I find this so frustrating... it really does feel like we are being left behind in our needs.

I have an excellent dementia medical team however. The psychiatrist, my CPN who deals with my needs, and specialises with the dementia team is a godsend and has sorted many things for me, however I now have another battle to fight!

I have recently received a letter from the DWP stating that I am being took off my Incapacity Benefit and going onto ESA... and they have placed me in the 'work-related' category, saying that an adviser will help me take steps to get me back into work! - that will be a challenge in itself! :eek:

Anyway, thanks for reading, and I look forward to hearing your replies... thank you! :)
 

Christin

Registered User
Jun 29, 2009
5,038
Somerset
Hello Daryl, welcome to Talking Point.

I am sorry to read that you have early onset AD, but hope that you find Talking Point both helpful and supportive.

Well done for getting the support for your mum and your step father, I hope that having some of the stress taken away will be a huge benefit to you.

I don't have any advice regarding the taking away of your Incapacity Benefit but wonder if you might find it helpful to contact the National Helpline.

National Helpline

I guess this is a very individual thing and its difficult to give advice on a forum. There are some AS videos I have watched on line where people have support in getting back to work, but as I said, its a very individual thing.

There is another link that you might like to have a look at

Living With Dementia Programme

I look forward to seeing you on TP again soon and please do let us know how you are getting on. x
 

Sue J

Registered User
Dec 9, 2009
8,035
Hi Daryl

Sorry've to read you have EOD. I too have symptoms and am 50 but undiagnosed. I can't take in all your post today - I'm sure you'll understand but wanted to respond re. your ESA it took me over 18months (I think) during horrendous time 2 medicals and an appeal tribunal before they put me in Support Group. I could not fill in the form properly and the best help for me came from CAB. It sounds though to me you have good team and get them to send as much supporting evidence as you can. I wanted to return to work and because of that and having worked over 30 years they were keen to get me back to work but didn't seem to listen to anything I was saying about my abilities and loss of them. The stress from the DWP really contributed to making my symptoms worse. Thankfully I am now in the Support Group but have no active help and support for my needs. If there was something for EOD sufferers it would do a lot to help with coing with the challenges and changes this brings.

Lots of help on here
Best wishes
Sue
 

rjm

Registered User
Jun 19, 2012
744
Ontario, Canada
Hi Daryl, wow, you certainly have been hit with everything this past year! It's great that you were able to get care for your mum and step-dad sorted out. Is your step-sister able to take over most of dealing with their needs to give you a break on that end? Officialdom does seem to have a hard time recognising early on-set dementias. My wife was 48 when diagnosed and all the initial dealings we had with her work, insurance, pensions etc. seemed to revolve around what could be done until she could get back to work. Even when her driving licence was revoked they sent a nice brochure outlining the steps she should take to get it re-instated if her condition improved (if only!). Eventually things did all fall into place and we do have wonderful support these days. It is good to know that you have a team in place to help you, you seem to be taking all the right steps. Best of luck and may your journey be smooth!
 

Daryl2510

Registered User
Hello again! :)

Thank you, everyone for the replies - it is actually nice to talk to people, who have some kind of inkling as to what I am going through, in both roles as a sufferer and carer at the same time.

I forgot to mention that the medication I am on for my Alzheimer’s is Aricept - I started at 5mg and then increased to 10mg, and have been on this for about 10 months now. It has helped keep me on top of things, and although I know it isn’t the cure, and I will deteriorate in my dementia’s progression, if the this medication can give me another couple of years as I am now, which has seemed to be suggested to me, then I cannot complain.

The next time my dementia nurse calls, I shall show her the letter from the DWP (she calls every month). If and when I have to see my personal adviser for my money, I shall just take her along with me, and tell them that she is there to take notes for me, because I won’t remember a word they will tell me. My working life was revolved around bar work and store sales - who will set me on for employment in that environment, with money involved? It isn’t that I could never be trusted in a fraudulent way - but say I got a job in those environs, and someone knew I had the illness, and said, for example they gave me a £20, when they only gave me £10?

Because my short-term memory is so poor ( I keep having to read this to make sure I know what I am on about! ;) ) - you could see what problems would arise with this?

Another example on this ESA benefit replacement I know of, is a young man, who is a known local drug addict and alcoholic - he has gone onto this ESA payment and has got the support-related group, where he hasn’t got to go to interviews, attend to get his money or have any follow up meetings… So why is it that someone with a self-inflicted illness seems to get the full support of the benefit services, yet someone who has been diagnosed with a long-term, chronic progressive illness, has to go on work-related group - when there is no cure for my illness - and I never will get better?

Sometimes I really am not so proud to be British, as much as I love my country and its people - it just seems that those who haven’t ever contributed to the workplace, and probably never will, get all the support, and yet I have worked and paid my taxes in my past, and I seem to be left to get on with it… It really is unbelievable sometimes! :mad:

But on a positive, I am strong-willed, and will gladly attend my interviews, along with my dementia nurse, and let the stupid fools at the DWP sort their own mess out, without even appealing - after the last year, more form filling and meetings really isn’t what I want or need, because:

1) I can no longer fill forms in for myself - and

2) I cannot go to places I don’t well on my own, or without support - it makes me to ill to do so.

The DWP started this - I will let them finish it too! :)

*** Rant Over ***

Once again, thank you everyone for all your support and look forward to talking to you all in the future here at the Alzheimer’s Society forums. :)
 

zeeeb

Registered User
Hi Daryl, Wow, you have a lot on your plate trying to care for others as well as yourself. I agree with the work / support thing. Often it is the case, that long term unemployed people with a shady past do get more support and help to get them off the dole, when often, they don't even want to work, they'll just do it to get the govt off their back, and then turn around and "get" unemployed again and go back on benefits.

It's unfair to say the least. Same thing here in Australia, so it's not just the UK. One would think that the governments should be doing something about making more employment opportunities for those with this illness, as it seems to be so prevalent, and more and more people are getting diagnosed each year, and younger. In Australia, we have programs for disabled people to get into work, so it's often quite dull and unskilled work, but gives people with disability opportunity to work, and have some independence, and a supported atmosphere to work in.

There are so many different illnesses that would benefit from more of these programs, think all types of mental illness, dementia, alzheimers, the whole autism spectrum, and all other types of physical and mental disability. That is a whole big bunch of available workforce.

Perhaps they need to work on expanding these types of things, so that people can labour, without having responsbility for the paperwork, money etc. And so that they can still be a functioning part of society. There are plenty of people who need work, and are willing to work, but not enough opportunities for supported work. And there are plenty of people who just aren't prepared to do those kind of jobs because they aren't glamorous and sexy enough for their image.
 

Daryl2510

Registered User
update to ESA post

Hi there again

Sorry for such a long time posting again - I forgot I had a thread here! :p

I am just writing to update you all with the mess that ATOS put me in when they passed me into the ‘Work’ category of ESA.

After an appeal to the DWP made by myself and the working age dementia team, I am pleased to say that the DWP overturned the ATOS decision and I have been placed on the ‘Support’ group as from 5 November - a good job really, as I had an appointment at the local JobCentre for an interview on Wednesday 7 November!

My dementia and CPN nurse Natasha was going to go with me, but that isn’t now, as I telephoned the DWP and they said that now I am on the Support Group, I no longer need to attend an interview.

So that is something of a relief. With still having to care for my Mam and stepdad, both with Alzheimer’s and look after myself too, the DWP has been one big worry on top of another - but that is one phase that is sorted now.

I have bookmarked this page, so will try and update any progress that happens in my Alzheimer’s journey whenever I can.

I have my own website too - which I keep updated:

Pop along - there is a link to this site on my homepage! :)
 

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Hiya Daryl,

Yay! Congratulations on winning your case! Not that you should have had to fight in the first place - but you did it and you won!

I hope this at least takes one area of major stress away from you and you can continue to give your mum and stepdad the attention they deserve. Please take care of yourself too - carers very often get so involved in looking after the folks that they don't take proper care of themselves too!

Fiona
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello Daryl, just wanted to say am so glad of your wonderful news on winning the battle with ATOS:D and you are now in the Support Group,this may give hope to other people, so thanks for the update and keep posting.
Take care
Chris
 

Bodensee

Account Closed
Mar 30, 2012
406
link you might find interesting

Hello Daryl,
This may or may not be of any help to you but I thought it was an interesting article about early onset Alzheimer's disease:

http://medicalxpress.com/news/2011-05-early-onset-alzheimer-memory-loss.html

also this is very interesting about 'Whole Brain Tractography'

http://medicalxpress.com/news/2012-04-mri-technique-dementias.html

Have you considered the possibility of being put forward for clinical trials of new drugs and vaccines as you are so young, also there have been advancements in image technology recently for early onset of neurological conditons such as AD if you look up the raising awareness area of this website you can see more about the new brain clinics that have just been announced. Best wishes to you.
 

Daryl2510

Registered User
Hello Daryl,
This may or may not be of any help to you but I thought it was an interesting article about early onset Alzheimer's disease:



also this is very interesting about 'Whole Brain'.

Have you considered the possibility of being put forward for clinical trials of new drugs and vaccines as you are so young, also there have been advancements in image technology recently for early onset of neurological conditons such as AD if you look up the raising awareness area of this website you can see more about the new brain clinics that have just been announced. Best wishes to you.
Thanks for the links and best wishes. :)

I wouldn't consider trials of new medicines and vaccines etc... I have come to terms with my condition, and the fact that I have to help care for my mother and stepfather with more advanced stage of the disease, might mean that if my condition worsens because of the trials, they would be left more vulnerable.

You see I haven't just myself to consider with the illness in this situation.
 

Daryl2510

Registered User
*** UPDATE ***

Since my last post... On Monday this week, I had to attend my local hospital for an appointment that my GP had made me, because I have been having muscle spasms and cramps down the left hand side of my body.

After seeing two doctors, and having tests and electrodes fitted to my muscles, I was diagnosed with the early stages of elderly Parkinson's Disease. I also have a secondary condition called Parkinsonian Syndrome, which usually only affects people in their 60s!

I have been put on a medicatIon called Mirapixen, and have got to telephone the hospital back in two week's time, if the medication suits me... if not, I have got to be put onto another drug to help combat the involuntary spasms and twitches I have.

... I can take it! :p lol
 

rjm

Registered User
Jun 19, 2012
744
Ontario, Canada
Hey Daryl, the dice aren't rolling your way at all are they? i hope the new meds help somewhat.
Wishing you all the best,
 

Joco

Registered User
Feb 24, 2012
23
Oh Daryl,
I'm sorry to hear of your new diagnosis. You sound like an upbeat person and very selfless too, but please use the forum to have a vent if ever you need it! I hope the medication works well and you are feeling better -I'm sure the cramps are pretty uncomfortable.

Take care,

Jo
 

Daryl2510

Registered User
Thank you all for your kind wishes... it has been a bit of a shock with this added condition but I will be OK hopefully. The new medication has been helping, although I still get tremors they aren't so bad as they were before the medication kicked in.

I promise I will try and keep you all up to date, as often as I can, and when I remember too! ;) lol
 
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Daryl2510

Registered User
Hi all...

Just an update to let you all know that I have been put onto the medication I mentioned as a repeat for my Parkinson's Disease - it has settled well, after a few turbulent days - which I think everyone suffers when starting new medications in their lives.

Also, please visit my website, there is a link to the Alzheimer's Society there... I like to write about what is happening in my life, whilst I still can, and try and update at least once, or twice a week.

My website is: www.daryllees.co.uk

You can keep up-to-date with me there, if I forget to post here, which I am prone to doing, when I lose my Bookmarks!

Thanks for your support, and I hope you visit me soon too! :)
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,807
69
Dundee
Just had a very quick look at your site Daryl. Wow. Well done! It looks a very attractive and well laid out site. I should be off to work by now so I'll look properly later. Take care. x