347 replies to this topic

[stevedude2]

Good to hear from you Daryl. Stay positive!

[LeeJ_Photographer]

The best of luck in your treatment and hoping for a full speedy recovery from you ... please keep all of us upto date with any news

[POSH4EVA]

I feel for ya mate I really do, I don't have anything quite as serious but I still have to take about 870 tablets a month for it and im sick to the back teeth of them and I will be on them for the rest of my life and have been on them for 3 years already. Stupid thing is they don't seem to be working that well too, and my hadns is one of the places that are affected the most Hope yours do a much better job and good luck for the future

BTW that picture is one months intake of tablets

And there was me thinking having to take 8 a day was bad

[Daryl]

Alzheimer's Update!

I have been for my six month annual review at the dementia clinic this morning, and luckily enough my mum had her appointment there today as well, so I killed two birds with one stone - so who says Friday the 13th is unlucky?

At long last, after eight long years, my mother's diagnosis was confirmed, and we have been told that she has moderate/severe Alzheimer's Disease, and has been put on the same drug as me for it - Aricept - but only the 5mg dose because they like to see how it will affect you. She will be on it for six weeks before her next appointment to see how she is managing with it.

Then it was my appointment… I thought everything was going well, which I think it is, but apparently little things, that I have noticed, but thought it was just me, is telling them that the Alzheimer's disease is progressing… slowly, but surely through its routine. My spelling, which I thought has always been good, is pretty poor from my last assessment. I have noticed, but thought it was my new Mac keyboard, that when I have been typing there have been a lot of regular 'red squiggles' under many words that I have been spelling, but apparently my handwriting is the same, and when I was asked to do spell some words, or write a sentence, even I noticed that I couldn't do some of it… it stopped me in my tracks, because any other time, I would have just done it - no problems - but now, I have noticed, just trying to string along sentences, even spelling the occasional word that seems really easy, can be a bit of a challenge.

It has come as quite a shock I can tell you… I thought I was breezing along, but it goes to show that I am not invincible, and that I cannot outdo nature.

Another thing that I never gave a thought about is that these past few weeks I have been getting spasms in my legs and arms, which I have never had before through my life apart from the odd cramp that we all get. I have been told today that this is part of the progression of Alzheimer's disease and they were concerned that the spasms have come on this early… they have said that I really shouldn't look into it yet as a sign that the disease is progressing rapidly - it could just be some reaction to medication - but they have also told me today that I must now name my 'next of kin' and sort out Power of Attorney for my nephew who lives with me - to be 'on the safe side'!

So I will continue to chat (and f*** you all off with my inane nonsense! ) for as long as I can continue to do so, and hopefully I am just going through a 'bad phase' but in case I am not, and I become less active, please don't worry, but inevitably things will come to a point where I shall not be able to keep you informed.

I just want you all to know now, that I have enjoyed these past 10 years in FME - we have had brilliant - and not so brilliant - times, but my devotion and love of FME (WAS) always what you as a scene, and dare I say of some of you, friends, stay all these years. I will always wish FME well for the future, whatever form it takes, even though I don't play it at all now, it was what made me get a PC and the internet in 2002! I will always want the best for it.

Peace and love to all! x

(This was done on TextEdit, a notepad for Mac OS X and thank goodness for it - you should've seen the 'red squiggles'! )

[todd1970]

Good to see your keeping well Daryl , well, as well as can be expected i spose.

Good luck to you in the months to come and hopefully it wont catch up with you too quickly , and your reasonable health continues.

[Daryl]

Another update

On Thursday 23 February, I had to put my mother into emergency respite care, as my stepfather has been diagnosed with moderate dementia, and after the social services have tried their hardest for me to shoulder the responsibility for them both, my stepfather, whilst obviously not in his right mind, went out and had to come back to their flat, leaving my mum out in town on her own, thankfully, I had just arrived when this was happening, and found my mum, in town, literally sobbing, and collapsing into my arms when she saw me.

It was enough for me to know, that this time, I had to take drastic action… so I telephoned my mother’s social worker, and told her that if my mother wasn’t put into emergency respite care that day, then by the next day, the national media would be aware of the situation… that someone with Alzheimer’s disease (me), had to be the carer of someone with advanced Alzheimer’s disease (my mum) and moderate dementia (my stepfather), and I was to make sure that they were OK. Within one hour, my mum’s social worker met me at my mum and stepdad’s flat, and after my stepfather threatening to kill me for removing my mum from him (he obviously isn’t in the right frame of mind because we love each other very much), my mum’s social worker and myself had my mum took into residential care.

My stepsister has been in touch with another social worker who has been assigned to my stepfather today, and she has arranged for my stepfather to go into respite care with my mum today, so at long last, they are both now in a residential home, together, being looked after by the proper authorities and medical carers who know how to deal with dementia illnesses, and NOT by me, who has had to do it all, with the same illness.

To say these past few weeks have been a nightmare is an understatement - I have felt physically and emotionally drained and yesterday, was as near for me to ending it all because I had to split them up, as I have ever been… but threatening the social services with the national media, and also taking the strong stance, that I never thought I had, has seen it through, and it looks like now they will both get the full help and care they both deserve and need, and at long last, I can actually be their son again, and not their carer, and VISIT them, not CARE for them. Not that I wouldn’t have done, because that is what I have done, but for what time I have left before I enter the ‘Twilight Zone’ of dementia, I want some time to enjoy myself, and I want my last few years of awareness to be, at long last, some time for me to enjoy.

Am I selfish in wanting this?… from reading what I have put, it sounds like a resounding YES!... but please believe me, I am far from selfish, and feel I have had to endure far too much for what someone in my position should have to have done, when all I have wanted, is what is best for my mum and stepdad. At long last this is happening, so wish me luck for the future and at last, some kind of freedom.

Love and best wishes to all x

[stanmarsh14]

Said my bit on FB already bud, but in any case, you have my number, you know where I am if you need me.

[Daryl]

Said my bit on FB already bud, but in any case, you have my number, you know where I am if you need me.

Thanks Mark, give me a couple of days for all this to absorb, and I have got your number mate, and I deffo will give you a bell - be good to talk to someone who knows what is happening, outside the scene (my family, not FME ) so to speak - cheers mate! x

[aaamusements]

Thoughts are with you, Daryl... having had a similar situation with a family member, I am definitely not going to judge you!

[chasnbons]

Another update

On Thursday 23 February, I had to put my mother into emergency respite care, as my stepfather has been diagnosed with moderate dementia, and after the social services have tried their hardest for me to shoulder the responsibility for them both, my stepfather, whilst obviously not in his right mind, went out and had to come back to their flat, leaving my mum out in town on her own, thankfully, I had just arrived when this was happening, and found my mum, in town, literally sobbing, and collapsing into my arms when she saw me.

It was enough for me to know, that this time, I had to take drastic action… so I telephoned my mother’s social worker, and told her that if my mother wasn’t put into emergency respite care that day, then by the next day, the national media would be aware of the situation… that someone with Alzheimer’s disease (me), had to be the carer of someone with advanced Alzheimer’s disease (my mum) and moderate dementia (my stepfather), and I was to make sure that they were OK. Within one hour, my mum’s social worker met me at my mum and stepdad’s flat, and after my stepfather threatening to kill me for removing my mum from him (he obviously isn’t in the right frame of mind because we love each other very much), my mum’s social worker and myself had my mum took into residential care.

My stepsister has been in touch with another social worker who has been assigned to my stepfather today, and she has arranged for my stepfather to go into respite care with my mum today, so at long last, they are both now in a residential home, together, being looked after by the proper authorities and medical carers who know how to deal with dementia illnesses, and NOT by me, who has had to do it all, with the same illness.

To say these past few weeks have been a nightmare is an understatement - I have felt physically and emotionally drained and yesterday, was as near for me to ending it all because I had to split them up, as I have ever been… but threatening the social services with the national media, and also taking the strong stance, that I never thought I had, has seen it through, and it looks like now they will both get the full help and care they both deserve and need, and at long last, I can actually be their son again, and not their carer, and VISIT them, not CARE for them. Not that I wouldn’t have done, because that is what I have done, but for what time I have left before I enter the ‘Twilight Zone’ of dementia, I want some time to enjoy myself, and I want my last few years of awareness to be, at long last, some time for me to enjoy.

Am I selfish in wanting this?… from reading what I have put, it sounds like a resounding YES!... but please believe me, I am far from selfish, and feel I have had to endure far too much for what someone in my position should have to have done, when all I have wanted, is what is best for my mum and stepdad. At long last this is happening, so wish me luck for the future and at last, some kind of freedom.

Love and best wishes to all x

Would your parents have wanted to put you in this situation............ NO!

Would they have expected you to have to cope with all this (especially with you being ill yourself)..... NO!

Did you ask for things to be like this.............. NO!

Should you have to try and cope with all this as well as your own illness......... NO!

You have done as much as you can, under extremely difficult circumstances, probably loads more than a lot of 'well' people could or would have done.

You are the first to admit that things aren't as 'good' if that's the right word to use, with regards your own health, and in my humble opinion, the time you have left to be able to enjoy yourself, you should be able to do so, without the constant fear that you might get a phone call etc, saying that's something's happened, which shouldn't have (yesterday being a prime example and VERY fortunate that you'd arrived at their home in the nick of time) something which you'd undoubtably blame yourself for, even though in truth, it wouldn't have been your fault.

My words to you are these, enjoy EVERY day as much as you can, do what you can when you can and (excuse my language) have a bloody good time while it's possible!

Try with all your heart to not feel guilty, you're their son and they would want you to be happy and enjoy yourself.

So in answer to your question regarding being selfish, the answer is a resounding NO Definately NOT M8.

All the best Daryl m8, take care and look after yourself, all your friends will be here if you need us, you only have to ask you know!

Phil

[jim2311]

Had your actions been that of a self centred selfish person you would not have taken the trouble to write about the situation.
You're only tormenting yourself because you are probably feeling guilty because it's people you care about.

A few years back a friend of mine had similar misgiving and questioned her own actions when she finally placed her Alzheimer suffering Uncle into a care home. It took a few months before she finally excepted that she had done the right thing, but still feels a little guilty if she doesn't get to the home to see him, even thought he has now reached the stage where he no longer recognizes her.
It may sound cold of me, but I keep telling her "he's had his life (83yrs) you have yours to live"

Dayrl, you have nothing to reproach yourself for, from what you say it's the most sensible solution for all concerned.

Jim

[Daryl]

I have completed the last course of dementia therapy (CST) yesterday, and below is my certificate for attendance and contribution... of which I am proud of!

The other week I am sure I remember hearing the PM saying that this government was putting total commitment into dementia care... yesterday we were told at the session that it was the last one because of government and NHS cutbacks - they couldn't afford to run anymore!

So where is this support? Not forjust myself you undertsand, I am lucky, I suppose because I am in the early stages of the illness, and just forgetful, but for the likes of my mother with advanced Alzheimer's Disease and her support day care centre closing due to lack of funds, and my support for 'working age dementia' people being cut - where is this support?

Where is also the government help and support for people with dementia and their benefits? I have been put onto ESA from Incapacity Benefit, and been put into the 'work-related' group. I wasn't aware that there were two groups, one for work related and one for support related. Because I have been put on the work-related group, I have been told that I will have my beenfit cut within a year if I don't find any employment... Tell, me, who is going to set me on? I have to have a family member with me or someone I know wherever I go, so they will have to come to work with me, stay with me and tell me what I am doing, because I am forgetful, I will probably forget what I am working on, and then bring me home. They will have to remind me to take my medications, and rest every hour because I get stressed if I am concentrating too long on something, and I am not aware of that!

I have now been told by the dementia nurse that I've got to appeal the decision, and because I wasn't aware that I was put into the wrong category, I have got to answer why my appeal is so late going in, or I could have my beenfit stopped... haven't I got enough on!

Thank you Prime Minister for showing your 'care and support' for people with dementia!


(My certificate - of which I am very proud!)

Attached Files

•  2012-09-27 13.00.21.jpg   100.82KB   13 downloads

[policematrix]

apparently if you starve for 2 days a week this makes your body and mind go into re-pare mode and actually starts making new connections in the brain , its all to do with protein intake and how your body responds
lots of protein the body goes into i dont give a shit mode we have lots of protein
no or low protein and the body stops copying DNA and actually starts reparing it also makes new brain cells to help you find a solution to lack of food . I also think LSD could help but as the government stopped all experiments with the drug we will never know
Anyway I wish you good luck with this illness and I hope you find a solution


EDIT:: they did experiments on rats with alltimers (sorry cant spell well) some where feed high fat and protein food equivalent to maccys the others where feed lots of veg and protein was a rarity , the first showed signs of the deseise at the human equivalent of 30 y the other mice only showed signs at over 90 y so my friend I would defiantly try the starving for 2 days a week I will look for some site http://www.scienceda...91020192206.htm

Edited by policematrix, 27 September 2012 - 12:58 PM.

[Daryl]

apparently if you starve for 2 days a week this makes your body and mind go into re-pare mode and actually starts making new connections in the brain , its all to do with protein intake and how your body responds
lots of protein the body goes into i dont give a shit mode we have lots of protein
no or low protein and the body stops copying DNA and actually starts reparing it also makes new brain cells to help you find a solution to lack of food . I also think LSD could help but as the government stopped all experiments with the drug we will never know
Anyway I wish you good luck with this illness and I hope you find a solution


EDIT:: they did experiments on rats with alltimers (sorry cant spell well) some where feed high fat and protein food equivalent to maccys the others where feed lots of veg and protein was a rarity , the first showed signs of the deseise at the human equivalent of 30 y the other mice only showed signs at over 90 y so my friend I would defiantly try the starving for 2 days a week I will look for some site http://www.scienceda...91020192206.htm

To be honest... I would sooner go gaga

Thanks for your best wishes though mate - I do appreciate those

[nails]

have you been watching on the news about the DNA research they have been doing? basically it was thought that 80% of the DNA was useless info and on 20% was relivant. turns out that the 80% is vital in finding out how we work, more specifically how we can pinpoint desease and quite literally cure it.

The possible permutations of DNA run into millions and millions, but its apparently been said that by now sifting through each individual pattern, they can come across (Alzheimer's/cancer/tumours/diabettes etc etc) and quite literally alter the DNA and produce a cure/block etc.

while the thought of cure for us all sounds fantastic, i do wonder what deseases could be actually made by playing with mother nature in the first place. that said cures for all the above and more definately get my vote.

[policematrix]

I think the protein in question is to red meats , white meats are ok i think like chicken fish ect