Alzheimer
- Thread starter kasiramis
- Start date
For anyone who missed it the first time round, the TV channel BLIGHTY (Sky 534/Virgin242) are showing Terry Pratchett: Living with Alzheimer's - Part One, on Monday 11th January at 8:00PM. Part Two is being shown the following day - 12th January also at 8:00PM.
For those without Sky or Virgin click on Blighty TV which may or may not (I don't know how these things work) be able to download the program to your computer. Maybe someone with more experience and knowledge can provide a link or information of how to watch the program for those outside of the UK?
For those without Sky or Virgin click on Blighty TV which may or may not (I don't know how these things work) be able to download the program to your computer. Maybe someone with more experience and knowledge can provide a link or information of how to watch the program for those outside of the UK?
A different perspective
Okay, before I go on, I need to point out that I by no means intend to step on any toes in here or that I am aiming at bringing down anyone else's opinion, views or feelings on the matter of Terry's illness.
As with everyone else in here, I also hope that Tez checks up on this page occasionally and sees what we all write - You're an absolute bloody legend mate, and it cuts us all, deeply, that you wont be writing for us throughout all eternity.
Right. What is happening to Terry, in my mind, is completely and utterly outrageous! It is wrong, it is unjust and it is simply a universal load of bollocks. If he were somewhat older and whatnot, then yeah, fair enough. Such is life (and death). The old bugger had a fair stint blah blah etc. But no. he isn't that bloody old and it should not be happening at all. It just ain't right. Why is it that these horrible and ridiculous afflictions always seem to happen to the best of us? Occurring well before said person's rightful amount of time in this world? I'm done with the upbeat and positive outlook on such. I'm really bloody mad. It is exactly this kind of thing that puts me off the idea of there being a greater and all powerful spiritual manifestation (i.e GOD), kicking back and calling the shots. If it turned out that this were, in fact, the case - I'm coming gunning for you, you infinite bastard!
Terry had a huge impact on me. Not only on the quality of my literature intake, but also to my core outlook of that big ol' nasty world that we live in. Very much due to his books, I have learnt to relax and even laugh at the grim reality that is the nastiness, fear, confusion and hate that exists within so much of todays society. He has proved to me that sometimes the rules CAN be broken, and you CAN get away with it (e.g. his writing format). He gave me books that i could, do and always will read over and over.
And here's a thing Terry, mate, there is only one set of books that i don't mind my big brother stealing from me, and they are oddly all of my favourite ones. Your books, of course (yeah, bro's a big fan too). Big bruv has spawned a whole tribe of boys, and I probably wont have any of my own. So, I rest easy knowing that all of those books will undoubtedly be passed onto said tribe of lads eventually, and through such, you will live on.
Okay, before I go on, I need to point out that I by no means intend to step on any toes in here or that I am aiming at bringing down anyone else's opinion, views or feelings on the matter of Terry's illness.
As with everyone else in here, I also hope that Tez checks up on this page occasionally and sees what we all write - You're an absolute bloody legend mate, and it cuts us all, deeply, that you wont be writing for us throughout all eternity.
Right. What is happening to Terry, in my mind, is completely and utterly outrageous! It is wrong, it is unjust and it is simply a universal load of bollocks. If he were somewhat older and whatnot, then yeah, fair enough. Such is life (and death). The old bugger had a fair stint blah blah etc. But no. he isn't that bloody old and it should not be happening at all. It just ain't right. Why is it that these horrible and ridiculous afflictions always seem to happen to the best of us? Occurring well before said person's rightful amount of time in this world? I'm done with the upbeat and positive outlook on such. I'm really bloody mad. It is exactly this kind of thing that puts me off the idea of there being a greater and all powerful spiritual manifestation (i.e GOD), kicking back and calling the shots. If it turned out that this were, in fact, the case - I'm coming gunning for you, you infinite bastard!
Terry had a huge impact on me. Not only on the quality of my literature intake, but also to my core outlook of that big ol' nasty world that we live in. Very much due to his books, I have learnt to relax and even laugh at the grim reality that is the nastiness, fear, confusion and hate that exists within so much of todays society. He has proved to me that sometimes the rules CAN be broken, and you CAN get away with it (e.g. his writing format). He gave me books that i could, do and always will read over and over.
And here's a thing Terry, mate, there is only one set of books that i don't mind my big brother stealing from me, and they are oddly all of my favourite ones. Your books, of course (yeah, bro's a big fan too). Big bruv has spawned a whole tribe of boys, and I probably wont have any of my own. So, I rest easy knowing that all of those books will undoubtedly be passed onto said tribe of lads eventually, and through such, you will live on.
Sorry by advance for my poor english, I live oversees. Bad side.
As I am fond of T.Pratchett and feel affected by his disease, I wish to share this small information
It is known since about 10 years there are strong evidence between Alzeihmer disease and agregate of tau proteins in brain.
The molecule FKBP52 have been proved to regulate formation of these agregates. First on volonteers (people who have donate their body to science), then genetically modified mices.
A program is already financed to pursue in this research over 2 years, by Etienne-Emile Baulieu's team.
Recent articles :
- http://www.pnas.org/content/early/2010/ ... 7.abstract
- http://www.xomba.com/alzheimer_new_runw ... nt_disease
I had close relatives who developped such nasty disease. I believe that the most important is to keep hope and live strong. Life can be so beautiful. And surely more beautiful with good mates like Terry.
As I am fond of T.Pratchett and feel affected by his disease, I wish to share this small information
It is known since about 10 years there are strong evidence between Alzeihmer disease and agregate of tau proteins in brain.
The molecule FKBP52 have been proved to regulate formation of these agregates. First on volonteers (people who have donate their body to science), then genetically modified mices.
A program is already financed to pursue in this research over 2 years, by Etienne-Emile Baulieu's team.
Recent articles :
- http://www.pnas.org/content/early/2010/ ... 7.abstract
- http://www.xomba.com/alzheimer_new_runw ... nt_disease
I had close relatives who developped such nasty disease. I believe that the most important is to keep hope and live strong. Life can be so beautiful. And surely more beautiful with good mates like Terry.
As with loroyse I have information about a possible treatment for Alzheimer's (not a cure, but to slow progression)
If anyone has Terry's ear may I suggest he look into 'low dose naltrexone' that has just started to be investigated for Alzheimer's. It is a drug that seems to have absolutely NO risk but is proving successful in slowing down, halting, or even reversing progression of MS (all types), ALS, Lupus and about 30 other progressive or chronic diseases by stimulating endorphin production to boost immunity.
This is an off label treatment but seems to be really helping many people world wide without causing any harm and can be used alongside many other treatments (but not interferon). It is a 'nothing to loose but your symptoms' treatment, and if it does not work it will not have made it worse.
I have no connection with the drug other than as an MS patient.
Please look into it I want to read a lot more excellent books.
If anyone has Terry's ear may I suggest he look into 'low dose naltrexone' that has just started to be investigated for Alzheimer's. It is a drug that seems to have absolutely NO risk but is proving successful in slowing down, halting, or even reversing progression of MS (all types), ALS, Lupus and about 30 other progressive or chronic diseases by stimulating endorphin production to boost immunity.
This is an off label treatment but seems to be really helping many people world wide without causing any harm and can be used alongside many other treatments (but not interferon). It is a 'nothing to loose but your symptoms' treatment, and if it does not work it will not have made it worse.
I have no connection with the drug other than as an MS patient.
Please look into it I want to read a lot more excellent books.
Immunoglobulin studies
Has anyone heard about the Baxter trial to treat Alzheimer's with intravenous immunoglobulins (IVIG)? Its actually moving to Phase III - as Phase II data was promising. Major companies are taking this very seriously.
Who knows if it will amount to anything - but it does highlight the risk of assisted suicide when cures may be around the corner 3, 5 or 10 years away.
Has anyone heard about the Baxter trial to treat Alzheimer's with intravenous immunoglobulins (IVIG)? Its actually moving to Phase III - as Phase II data was promising. Major companies are taking this very seriously.
Who knows if it will amount to anything - but it does highlight the risk of assisted suicide when cures may be around the corner 3, 5 or 10 years away.
I hope your post is seen by terry I have every sympathy - my mother died of Alzheimer's in Jan 2009 after a long illness.
But what I want to say to terry is aotu how I can join his campaign AND DO SOMETHING?
My story
__________________________
To Terry Pratchett
My 20 year old daughter and myself have been a fan of your books since the first one
But I want to know how I can join your campaign about a right to die when you choose and in the manor you choose
My mum recently died of Alzheimer’s and many in our family have but I & my husband sadly was also diagnosed with HIV at the too old age of 55.
We did not know we had HIV until my husband got AIDS. He was a seaman for over 30 years who picked up HIV abroad, did not know he had and so gave it to me in our middle age.
While he was saved initially and survived AIDS in 2007 his health is not good and who knows how long he - or I have as we both had late diagnosed HIV and 'officially' he was hospitalised with AIDS and I to ‘officially had AIDs before we both went on HIV medications.
I am sure anyone reading this who knows only what the general public does about HIV infection will say ‘what is the problem?’ with HIV meds people with HIV have a long and healthy life?’
The truth is ‘some do’ but it is still the luck of the draw to an extent and all people with HIV, even treated and controlled HIV, have a far higher change of getting any number of different cancers including liver, breast, cervical, prostrate etc, heart disease and dementia than the average person without HIV..
And also there is almost two illnesses. Those diagnosed early, within a couple of years and during the latency period before any significant and lasting damage was done to your immune system and brain, and those with HIV diagnosed late, sadly we were diagnosed very late.
Before the newest HIV drugs came about in about, many who were diagnosed late simply did not survive long even if on medication.
But since the invention of HAART ( Highly Active Anti Retroviral Therapy) around 2004 many more survive their initial HIV, but many go on to die and quite slowly, of other complaints or dementia ( as no drug completely controls HIV virus in the brain and the longer it is left to wash round the brain unchecked the more damage it does)
So while the HIV meds do work the good prognosis applies to those diagnosed while still in good health before their immune system has been compromised the prognosis is still not good for those diagnosed as older people and those diagnosed late and to die of AIDS is not a pleasant death
But more to the point for me a VERY large number of people with HIV get HIV related dementia and this is more likely the later your HIV was diagnosed and if it has gone untreated for sometimes like in both my husband I.
Thankfully my husbands brain functioning seems OK despite the fact he has been closer to death from AIDs than me, his mind seems unaffected but mine is not.
I know I have the beginnings of dementia, but although have asked time and time again to be tested the NHS say I am too young - 57 - but I know I have it & that it is
NOT my imagination !!
The sad thing is you do know when your mental functioning is diminishing long before it becomes obvious to others - and it is sooooo frustrating
Anyway I want the right to die in the way I choose and to make the decision before I am unable to. I have watch several members of my family go through dementia / Alzheimer’s
But theirs started much older than me as it was not HIV related, I have all the cards stacked against me now in terms of keeping my facilities for much longer - And selfishly I have no wish to follow them in to the death I watched them have and forewarned and much younger.
Nor do I want to put my husband through the situation of having to look after me in this state when he also has late stage HIV
How do I join your campaign – what can I do to help while I still can be of use?
Veritee
But what I want to say to terry is aotu how I can join his campaign AND DO SOMETHING?
My story
__________________________
To Terry Pratchett
My 20 year old daughter and myself have been a fan of your books since the first one
But I want to know how I can join your campaign about a right to die when you choose and in the manor you choose
My mum recently died of Alzheimer’s and many in our family have but I & my husband sadly was also diagnosed with HIV at the too old age of 55.
We did not know we had HIV until my husband got AIDS. He was a seaman for over 30 years who picked up HIV abroad, did not know he had and so gave it to me in our middle age.
While he was saved initially and survived AIDS in 2007 his health is not good and who knows how long he - or I have as we both had late diagnosed HIV and 'officially' he was hospitalised with AIDS and I to ‘officially had AIDs before we both went on HIV medications.
I am sure anyone reading this who knows only what the general public does about HIV infection will say ‘what is the problem?’ with HIV meds people with HIV have a long and healthy life?’
The truth is ‘some do’ but it is still the luck of the draw to an extent and all people with HIV, even treated and controlled HIV, have a far higher change of getting any number of different cancers including liver, breast, cervical, prostrate etc, heart disease and dementia than the average person without HIV..
And also there is almost two illnesses. Those diagnosed early, within a couple of years and during the latency period before any significant and lasting damage was done to your immune system and brain, and those with HIV diagnosed late, sadly we were diagnosed very late.
Before the newest HIV drugs came about in about, many who were diagnosed late simply did not survive long even if on medication.
But since the invention of HAART ( Highly Active Anti Retroviral Therapy) around 2004 many more survive their initial HIV, but many go on to die and quite slowly, of other complaints or dementia ( as no drug completely controls HIV virus in the brain and the longer it is left to wash round the brain unchecked the more damage it does)
So while the HIV meds do work the good prognosis applies to those diagnosed while still in good health before their immune system has been compromised the prognosis is still not good for those diagnosed as older people and those diagnosed late and to die of AIDS is not a pleasant death
But more to the point for me a VERY large number of people with HIV get HIV related dementia and this is more likely the later your HIV was diagnosed and if it has gone untreated for sometimes like in both my husband I.
Thankfully my husbands brain functioning seems OK despite the fact he has been closer to death from AIDs than me, his mind seems unaffected but mine is not.
I know I have the beginnings of dementia, but although have asked time and time again to be tested the NHS say I am too young - 57 - but I know I have it & that it is
NOT my imagination !!
The sad thing is you do know when your mental functioning is diminishing long before it becomes obvious to others - and it is sooooo frustrating
Anyway I want the right to die in the way I choose and to make the decision before I am unable to. I have watch several members of my family go through dementia / Alzheimer’s
But theirs started much older than me as it was not HIV related, I have all the cards stacked against me now in terms of keeping my facilities for much longer - And selfishly I have no wish to follow them in to the death I watched them have and forewarned and much younger.
Nor do I want to put my husband through the situation of having to look after me in this state when he also has late stage HIV
How do I join your campaign – what can I do to help while I still can be of use?
Veritee
