Alzheimer

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Alzheimer

Postby kasiramis » Wed Oct 15, 2008 3:22 pm

It's quite difficult to get a message to someone you care about and sympathize with. So this is my try just in case Terry might stumble into one of this forum by chance.
Dear Mr. Pratchett,
a few years ago my gandmother died - for many years she had alzheimer and i know exactly how you must feel now. The thing i learned out of these years of taking care for her is, that you can still have wonderful days and the only thing that can keep you from it is not the disease, but fear. - Never fear that you might be a burden for someone close to you! They will still love you no matter what. Keep this thought planted in your heart as an ancor to reality. (I must say this now - because when fear has its seed planted this disease will foster it well.)
My best wishes go with you and may your days be long and happy.
We are all with you.
Ines
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Postby chris.ph » Wed Oct 15, 2008 5:17 pm

i think we all give our prayers and best wishes. my gran also had dementia
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Postby Tonyblack » Wed Oct 15, 2008 6:32 pm

Hi kasiramis, thanks for sharing that and I hope that Terry sees it. :)

I think that what Terry is doing in talking about his illness and acting as a spokesman is quite marvellous. He's made his illnes have a positive side to it.

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Postby Tiffany » Wed Oct 15, 2008 8:51 pm

I am in total agreement here. Terry Pratchett is doing a marvellous thing, in talking about his illness. I wish him all the best in the future.
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Postby cattermojo » Thu Oct 16, 2008 9:43 pm

Hi, one one can know what is like to be told that they something that has no cure and a one way journey. But I know what it's like for me. I was diagnosed with Multiple Sclerosis in 2005, had to take medical retirement in 2006 and now take morphine three times a day (plus lots of other medications) just to keep going that little bit longer. To be told you have incurable disease, that is degenerative, and you will loose the ability to walk very soon (and they're the good points!) it sucks. But life does go on. It does not end, but every day it is different. Keep doing what you enjoy most, don't get bogged down with that which cannot be changed, but never forget those that love you for who you are. Take care. John
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Postby Tonyblack » Thu Oct 16, 2008 11:32 pm

Hi John and welcome to the site. :)

Yes, being told you have something incurable is incredibly hard. But as you say - what can you do about it. :( You have to keep going as best you can and learn to live with it.

While I don't have a life threatening illness, I have been diagnosed with chronic depression and am classed as disabled due to it. It's hard, but you learn to live with it. You recognise your limitations and avoid situations that are going to make matters worse.

I hope, John, that you'll have a long time yet before things get too bad for you.
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Postby chris.ph » Fri Oct 17, 2008 5:08 pm

we could have a competition "whos the illest" i had my large intestine removed last year after coming within 72 hours of dying but luckily i was rushed in for emergency surgery. any illness is hard to cope with but a deregerative illness must be hard as you can feel yourself getting worse. a friend of mine has ms and has tried hyperbaric treatment,adder venom and bee stings , he saysthe cannabis is the best treatment tho the doc prescribes it for him :lol:
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Postby chris.ph » Fri Oct 17, 2008 5:11 pm

whats the old saying about depression tony "being bipolar has its ups and downs" i think it is, stephen fry came up with that one dont blame me :)
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UBC testing drug

Postby Graeme T » Sat Nov 01, 2008 2:29 am

At the University of British Columbia, in B.C. Canada, researchers have discovered that a drug commonly used to treat epilepsy and bipolar disorder significantly reduces brain plaque in mice with Alzheimer's disease.

The medical team has already recruited 30 people with early stage alzheimer's to participate in a small trial.

They found that the drug reduced the formation of plaque on the mice's brains, which in turn led to less brain-cell death and improved performance on memory tests.

Well, that pretty much sums up the article for us.

The medicine is commanly called Epival, or in england or usa may be called Depacane, Depacote, or something similar. Valproate is the compound it converts to in the blood.

I hope this helps...
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Postby Tonyblack » Sat Nov 01, 2008 2:29 pm

It's incredible that (at least it seems this way) since Terry spoke out about his alzheimers, that we are learning that all sorts of researchers are working on it.

Maybe it's just that, as Pratchett fans, we are suddenly more interested. But it sounds positive - thanks for sharing the info Graeme T and welcome! :)
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Postby Quilpusha » Sun Nov 02, 2008 9:43 am

Tonyblack wrote:It's incredible that (at least it seems this way) since Terry spoke out about his alzheimers, that we are learning that all sorts of researchers are working on it.


The research was happening when my Dad was diagnosed back in 2002, Tony. Just terribly underfunded. I have taken the liberty of plucking the following from Wikipedia - the emphases are mine.

Alzheimer's disease (AD), also called Senile Dementia of the Alzheimer Type (SDAT) or simply Alzheimer's, is the most common form of dementia. This incurable, degenerative, and terminal disease was first described by German psychiatrist Alois Alzheimer in 1906. Generally it is diagnosed in people over 65 years of age although the less-prevalent early-onset Alzheimer's can occur much earlier. An estimated 26.6 million people worldwide had Alzheimer's in 2006; this number may quadruple by 2050.
Although each sufferer experiences Alzheimer's in a unique way, there are many common symptoms. The earliest observable symptoms are often mistakenly thought to be 'age-related' concerns, or manifestations of stress. In the early stages, the most commonly recognised symptom is memory loss, such as difficulty in remembering recently learned facts. When a doctor or physician has been notified, and AD is suspected, the diagnosis is usually confirmed with behavioural assessments and cognitive tests, followed by a brain scan if available. As the disease advances, symptoms include confusion, irritability and aggression, mood swings, language breakdown, long-term memory loss, and the general withdrawal of the sufferer as their senses decline. Gradually, bodily functions are lost, ultimately leading to death. Individual prognosis is difficult to assess, as the duration of the disease varies. AD develops for an indeterminate period of time before becoming fully apparent, and it can progress undiagnosed for years. The mean life expectancy following diagnosis is approximately seven years.[8] Fewer than three percent of individuals live more than fourteen years after diagnosis.
The cause and progression of Alzheimer's disease are not well understood. Research indicates that the disease is associated with plaques and tangles in the brain. Currently-used treatments offer a small symptomatic benefit; no treatments to delay or halt the progression of the disease are as yet available. As of 2008, more than 500 clinical trials were investigating possible treatments for AD, but it is unknown if any of them will prove successful. Many measures have been suggested for the prevention of Alzheimer's disease, but their value is unproven in slowing the course and reducing the severity of the disease. Mental stimulation, exercise, and a balanced diet are often recommended, as both a possible prevention and a sensible way of managing the disease.
Because AD cannot be cured and is degenerative, management of patients is essential. The role of the main caregiver is often taken by the spouse or a close relative. Alzheimer's disease is known for placing a great burden on caregivers; the pressures can be wide-ranging, involving social, psychological, physical, and economic elements of the caregiver's life. In developed countries, AD is one of the most economically costly diseases to society.



In the case of my father, he went undiagnosed for several years - largely because of his own refusal to accept that anything was wrong with him. That 'attitude through ignorance' doesn't help.
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Postby Tonyblack » Sun Nov 02, 2008 5:51 pm

Let's hope that Terry's 'awareness' campaign means that the research gets a whole lot more funding.
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Postby Jan Van Quirm » Mon Nov 10, 2008 1:52 pm

Great info Quilpusha :)

The more this is brought out in the open the better and like everyone who's posted I think Terry is doing brilliant work in the mainstream media in bringing up the 'profile' of the condition.

With mental conditions there's a lot of misinformation, fear and prejudice and often sufferers have little support outside of their families as most people have little understanding of the various illnesses and their efffects. With early onset Alzheimers, as it implies, people won't look 'old' and so their behaviour is viewed as scarily odd - you get far more consideration if you're visibly 'afflicted'.

Tony - I'm a fellow chronic depressive although I'm judged as 'incapable' rather than 'disabled' having managed to work for 5 years when I finally admitted I had a big problem and started on the anti-depressants. So 'they're' determined I'm going back into the job market eventually, except I'm not 'cos that's mostly the reason why I'm depressed and I'll give it 6 months tops before I 'burn out' again if I do have to go back :lol: I know I will 'cos this has been happening since I was 15....
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Alzheimers - Blood pressure medication?

Postby WTMorris » Wed Nov 26, 2008 6:55 pm

Is Mr Pratchett on any medication to lower blood pressure, I wonder?

"Mental confusion" is often listed as a possible side-effect, and this can look very much like early Alzheimers. After all, with a reduction in blood pressure there will inevitably be the possibility of reduced blood flow to the brain, other things being equal.

We saw this very clearly with my late mother-in-law, who became uncharacteristically vague and confused as soon as she started on blood-pressure tablets, and recovered as soon as she stopped taking them (reducing dose to half-tablets for a few days, then quarter, then none after two or three more days). She went on to age 91 - sharp as a needle to the end, thankfully.

Just a thought, in case it helps. (But don't stop taking medication without consulting your doctor!)
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Postby Dotsie » Wed Nov 26, 2008 7:11 pm

Hi WTMorris! That's an interesting thought, I've never heard of that one before. But I should imagine Terry's doctors have tested the heck out of him by now.
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