Alzheimer

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wow

Postby kasiramis » Tue Jan 26, 2010 2:45 pm

hi there
I would have never thought that I started such an interesting and broad field of comments. Great suggestions, ideas and emotions.
Keep up the search keep up the fight and keep up the hope.
Live can be a sunset every morning ;)
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Postby Loroyse » Thu Jan 28, 2010 1:53 am

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.
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Postby Tonyblack » Thu Jan 28, 2010 6:44 am

Welcome to the site Loroyse - and no need to apologise for your English as it was perfectly well written. :)

Thanks for the information.
"Goodness is about what you do. Not what you pray to."
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Postby Sjoerd3000 » Thu Jan 28, 2010 11:53 am

Welcome to the site Loroyse :D
A poster outside one shop urged people to Dig For Victory, as if it were some kind of turnip.
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Postby chris.ph » Thu Jan 28, 2010 6:54 pm

welcome to the site loroyse :)
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Postby Penfold » Fri Jan 29, 2010 2:26 pm

Welcome from me too :)
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Postby captain invincible » Sun Jan 31, 2010 10:38 pm

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.
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Postby Penfold » Mon Feb 01, 2010 12:21 am

Thanks for the info Captain and welcome to the site. :) I have a friend with MS, so I'll pass your comments on to her.
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Postby Tonyblack » Mon Feb 01, 2010 6:30 am

Hi there Captain! I wish I could tell you for sure that Terry visits the site, but I'm afraid we just don't know.

Thanks for the information. :)
"Goodness is about what you do. Not what you pray to."
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Immunoglobulin studies

Postby wishywampy » Mon Feb 01, 2010 7:41 am

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.
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Postby veritee » Mon Feb 01, 2010 10:01 am

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?

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Postby Tonyblack » Mon Feb 01, 2010 11:38 am

Welcome to the site wishywampy and veritee! :)

I'll stress again that we have no idea if Terry looks at this site. The site is owned by his UK publishers, so we can only hope that he does.

Thank you for your info and the very best wishes to you all.
"Goodness is about what you do. Not what you pray to."
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Postby Sjoerd3000 » Mon Feb 01, 2010 12:33 pm

Welcome to the forum wishywampy and veritee! :D
A poster outside one shop urged people to Dig For Victory, as if it were some kind of turnip.
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Postby Penfold » Mon Feb 01, 2010 12:52 pm

And welcome from me too, Wishywampy and Veritee! :)
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Alzheimers

Postby Sannatjie » Sun Feb 07, 2010 9:11 pm

The reason I joined here is because my father has alzheimers and I am battling to cope with the swift changes in him. Yesterday he told me that he does not have any children and today he said my mother is missing and I must please try and find her for him. This is terrible for me
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