Newbie here with early onset Alzheimer's Disease

Cloverland

Registered User
Jun 9, 2014
244
I want to wish all who follow my post blog here a very happy and peaceful New Year 2015...

... I also hope you all had a lovely and Merry Christmas and were with those that you love and who love you. :)
Your an inspiration to everyone on TP whatever their reason, I look forward to reading more of your blogs.

Your home looks great :)

Merry Christmas and a happy blog busy 2015
 

PalSal

Registered User
Dec 4, 2011
779
Pratteln Switzerland
Our experience

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.
Hi Daryl,
Welcome to talking point. I hope you find support here. I do believe the UK is very advanced in its support for patients and carers....there appears to be effort. We are in Switzerland and not good linguists and are very isolated so talking point is helpful.

I would just like to say my husband did a trial early in his process. (he like you was very young 49--unlike you he was in denial which caused other huge problems)

But he did do a clinical trial for two years from Novartis, early in the years. We now know he got the drug not the placebo, vaccine series. We believe this process greatly delayed his symtoms. But we have no proof of this, but he was 20 yeaars younger than the other participants and so we do think it helped him. And as we have four children, he believes it is also it will perhaps help them in the future. It is, of course, a personal decision and your situation is extraordinarily difficult knowing you must care of others.

I hope you will find what you need here.
PalSal
 

Daryl2510

Registered User
Hi Daryl,
Welcome to talking point. I hope you find support here. I do believe the UK is very advanced in its support for patients and carers....there appears to be effort. We are in Switzerland and not good linguists and are very isolated so talking point is helpful.

I would just like to say my husband did a trial early in his process. (he like you was very young 49--unlike you he was in denial which caused other huge problems)

But he did do a clinical trial for two years from Novartis, early in the years. We now know he got the drug not the placebo, vaccine series. We believe this process greatly delayed his symtoms. But we have no proof of this, but he was 20 yeaars younger than the other participants and so we do think it helped him. And as we have four children, he believes it is also it will perhaps help them in the future. It is, of course, a personal decision and your situation is extraordinarily difficult knowing you must care of others.

I hope you will find what you need here.
PalSal

Thank you PalSal...

I have been a member here at TalkingPoint for 2 years now and have browsed and posted on a few subjects... I have an Alzheimer's package myself from the Alzheimer's Society and I even have a support team member named Angela from them in my local community. I am even awaiting an interview I have had with the TP magazine with my own personal support worker having photos taken with me to be published!

I am so glad that I joined here all those years ago now :)
 

Daryl2510

Registered User
My 'Andy Warhol' 15 minutes of fame...

My story of diagnosis and caring has made the Alzheimer's Society's magazine, 'Living With Dementia'...

...the photos of myself doesn't do it justice at all in the article - but the story (well, truth actually) and how it has been brilliantly written by Fiona Madden has certainly done the piece justice!

I hope you enjoy the read - here's the link, if it is permitted to be allowed please ;) - thanks! :)

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

Daryl2510

Registered User
A belated update...

Sorry for not posting in such a while...

...You know what it is like! ;)

Anyway, here goes:

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!
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hi Daryl :)

A belated happy birthday to you!!

I'm sorry, I've only just seen your thread. I'm glad that you've been able arrange care for your mum and stepdad....and that you have such a good support worker and social worker yourself. I really enjoyed reading the article on the website :cool:

Sending you all the best :)

Lindy xx
 

tc40

Registered User
Nov 3, 2015
2
New to this forum and would like to share some positive news

I have been caring for a close relation in his mid 50s with early stage dementia for some time now, I am also worried about the possibility of this being hereditary so I decided to do some research and try some of the suggestions out there, during the first 18 months we tried all the usual suggestions, puzzles, games, drawing, painting, memory tests, gardening, new diet and exercise these were enjoyable but the symptoms continued, we also tried the more challenging suggestions such as learning a new language and playing an instrument, we gave up on the language after a week this seemed to make him more frustrated especially as he had not been taught any languages as a child, learning to play a keyboard certainly created an interest and was a pleasant experience however none of the tunes were learnt all the way through to the end. Almost 6 months ago we were in a long (long then was 4 minutes) conversation about a place of work 30 years earlier, back in the 1980s, he talked rather patchy about a motorcycle he owned at the time a silver Yamaha 1100cc, he went on to chat about seeing the same bike a few years ago at motorcycle show, this got me thinking that it would be a good idea to write all these strong memories down, as this was a great way to stimulate the part of his memory that like many of us we rarely use, at first I bought a blank book and entered the details, but this became confusing and patchy, so then one evening when I was looking for a birthday present for a friend I came across a company in the UK that made personal memory diaries that you could purchase by the year/decade a person was born, when it arrived it also had pages for adding photographs which of course we had many, plus for every decade from the year he was born there were memory joggers to help you remember that moment in time, these were songs, artist, films, news events even prices all from that era, so for just a few minutes every few days we would sit and recollect moments from his past, sometimes just one liners ie day trip, relationship, holiday, new car etc, within a few weeks this was now becoming addictive, and he would be recalling moments from all periods of his life and then searching for photos to place in the book, Today we have filled almost all the diary and have over 30 photographs in it, although he still occasionally muddles words up and forgets were he is some days, overall I feel it has helped him and myself in many ways, he is far more alert, his day to day memory is much improved, he doesn't get depressed as before and now other family members have more to talk about with him, they now actually know more about his past than ever before.
Sites such as Alzheimers.org constantly refer to keeping Journals and writing but sadly this is not something sufferers are usually interested, so by making it fun and enjoyable his quality of life today has vastly improved. hope this helps.
 

Daryl2510

Registered User
I have been caring for a close relation in his mid 50s with early stage dementia for some time now, I am also worried about the possibility of this being hereditary so I decided to do some research and try some of the suggestions out there, during the first 18 months we tried all the usual suggestions, puzzles, games, drawing, painting, memory tests, gardening, new diet and exercise these were enjoyable but the symptoms continued, we also tried the more challenging suggestions such as learning a new language and playing an instrument, we gave up on the language after a week this seemed to make him more frustrated especially as he had not been taught any languages as a child, learning to play a keyboard certainly created an interest and was a pleasant experience however none of the tunes were learnt all the way through to the end. Almost 6 months ago we were in a long (long then was 4 minutes) conversation about a place of work 30 years earlier, back in the 1980s, he talked rather patchy about a motorcycle he owned at the time a silver Yamaha 1100cc, he went on to chat about seeing the same bike a few years ago at motorcycle show, this got me thinking that it would be a good idea to write all these strong memories down, as this was a great way to stimulate the part of his memory that like many of us we rarely use, at first I bought a blank book and entered the details, but this became confusing and patchy, so then one evening when I was looking for a birthday present for a friend I came across a company in the UK that made personal memory diaries that you could purchase by the year/decade a person was born, when it arrived it also had pages for adding photographs which of course we had many, plus for every decade from the year he was born there were memory joggers to help you remember that moment in time, these were songs, artist, films, news events even prices all from that era, so for just a few minutes every few days we would sit and recollect moments from his past, sometimes just one liners ie day trip, relationship, holiday, new car etc, within a few weeks this was now becoming addictive, and he would be recalling moments from all periods of his life and then searching for photos to place in the book, Today we have filled almost all the diary and have over 30 photographs in it, although he still occasionally muddles words up and forgets were he is some days, overall I feel it has helped him and myself in many ways, he is far more alert, his day to day memory is much improved, he doesn't get depressed as before and now other family members have more to talk about with him, they now actually know more about his past than ever before.
Sites such as Alzheimers.org constantly refer to keeping Journals and writing but sadly this is not something sufferers are usually interested, so by making it fun and enjoyable his quality of life today has vastly improved. hope this helps.
I've struggled to really understand what you have written... but I think dementia affects everyone in different ways - if that is what you have mentioned.

Memory jogging, like I believe you have written, and participating in events that usually people like myself used to do is one form of therapy, and I am glad that this has helped your partner.

I have always written... I'm finding it much harder now to write manually with a pen etc, because my writing is poor and spelling is bad - but with the help of a PC, keyboard and a very good spelling predictive and corrector - I find that what I have always enjoyed doing is so much easier and brings me the pleasure I have always had in communicating. :)
 

Daryl2510

Registered User
Happy New Year...

I hope you all had a Merry Christmas...

Here's to 2016 - and hopefully progress on all kinds of dementia - its affects, causes and breakthroughs to try and rid the world of one of the most cruellest diseases I have ever known!

Here's wishing - and hoping too!

Happy New Year

Daryl x