Sunday, 14 December 2014

Donating your brain

Whether they believe in life after death or not, most people do not think of the body as having much use to anyone after death, which is why it is usually burnt or buried.

For many years now the principle of removing organs for donation where appropriate has been generally accepted and, in many cases, this can lead to other people's lives being saved.

You cannot, yet, donate your brain for potential transplant  -  and it is not hard to understand the problems, beyond the technical, that would be involved with that.

But you can still donate your brain, and your gift might help in the understanding of brain disease which could, eventually lead to potential treatments and cures. Neither you nor your relatives can use your brain after you and it are dead so that it could be put to use in this way is surely worth thinking about.

I hadn't thought about it at all until dementia came into my life.  I still don't think about it much but I'm starting to consider donating my own brain.  Even if it is not affected by dementia  -  and 20% of people in their late 80s will develop dementia  -  it could still be of use to researchers.

You can find out more here:

There's even a Brains for Dementia Research Centre.

Saturday, 13 December 2014

A visit to the dentist

For several years now I've taken S to see my excellent dentist (I've been going to him for over 25 years). She lost faith in the one she'd had for a while.

My dentist has always been brilliant and we had no problems until last year. Then S kept closing her mouth. She has a small mouth and had never liked having it 'open wide' for long but last year the dentist couldn't see very much at all. She wasn't refusing to open her mouth and was perfectly calm. I should probably have suggested that he could be more assertive but we left it there and he hardly charged her for what was hardly a check-up.

During the year since, I've thought about it a bit. When she had settled down on the chair I asked if he would mind my holding her mouth open. He had no objection but warned me that I might get bitten. He was able to do a bit like this - more than last year - but I did have the teeth clamping down on my nails a few times. I asked if he could try the clamps that they use and he found the smallest size and inserted it sideways. S was O.K. with this and he was able to see a bit more round the back. He said they looked pretty good and that I'd done well in my cleaning of them.


I dread to think what it would be like if she had to have treatment.

Tuesday, 9 December 2014

Disability Living Centres

These centres, run by a charity, enable people with physical disabilities and their carers to discuss the aids and adaptations that are available.  It's also possible to try out any of them that look as though they might be useful.  You can make an appointment with an Occupational therapist who will talk you through their features, uses, advantages and disadvantages.

Of course, you then have to buy them yourself (unless you are fortunate enough to have them provided by your Local Authority) but it is very useful to get free objective and professional advice prior to buying.

Wednesday, 3 December 2014

Finding the positives, even in small things

I try to look for positives in our situation. I sometimes see them and then forget. So I'm trying to keep a bit of a record. I'm jotting them down in a notebook.

I'm not talking major events of course and some of them are only noteworthy because I used to take then for granted and they haven't happened for a while. But in the last week:

I've twice seen S mouthing the words to songs, one of which we were singing at one of our groups ('It's a long way to Tipperary') and one I had on in the the car and was singing along to myself ('Da Doo Ron Ron').

Twice she's picked up a piece of apple that I'd put in front of her and started to eat. For ages I've been handing her pieces of fruit on the assumption that that was the only way they would get to her mouth.

I was helping her up from the settee, holding her hand and saying 'Push up', when she said, as she did it, 'If I can...' (it was a bit of a joke  -  she knew she could)  This after God knows how long when I think I've only heard yes or no.

It would be very easy to list the negatives of course.  This is, for everyone, a disease that, over time, is only heading one way.  But it's good to remember that these positive things still happen.

Sunday, 30 November 2014

A treatable disease that can be mistaken for Alzheimer's

I came across this online.  There's a condition called  Normal Pressure Hydrocephalus (NPH) that causes, amongst other things, dementia that can be mistaken for Alzheimer's Disease:

In some cases the disease is treatable.  Sometimes patients can make an almost complete recovery.

Everyone interested in dementia should be aware of this disease as it is one of the few conditions involving dementia for which there is, sometimes, a 'cure'.  If someone with NPH is diagnosed as having AD, the consequence could be that they miss out on the possibility of successful treatment.

Wednesday, 19 November 2014

HSV1 and Alzheimer's Disease again

Yet more about the link between the herpes simplex virus (HSV1) and Alzheimer's can be found by following this link:

From the Alzheimer's Society Dementia Catalogue

The AS Dementia Catalogue, which I've only just discovered, looks like a very useful resource generally for anyone interested in dementia.

For new readers, these posts also deal with the herpes virus and Alzheimer's/dementia:

Tuesday, 11 November 2014

An interesting article about ageism....

..which might offer one explanation as to why research into dementia, which primarily affects and kills older people, is so shockingly underfunded as compared with research into cancer, for example:

Article in The Lancet

Friday, 31 October 2014

A best-seller first novel that accurately portrays AD

I've just finished reading 'We Are Not Ourselves' by Matthew Thomas. It's one of the best books I've read for a long time.

One of the main characters develops Alzheimer's  -  a bit of a spoiler, I know, but that's the reason I'm recommending it here.

I found it absolutely authentic in its portrayal of the disease and its effects on the lives of others. I don't know of any other novels that have done this but I expect there are some.

I didn't know about the focus on Alzheimer's when I started the novel and wouldn't necessarily have chosen to read such a novel if I had known but I'm so glad I did.

Wednesday, 29 October 2014

Telling it like it is

This article in 'the Guardian' gives an accurate insight into the horrific ways in which dementia can affect the lives of people living with it, and the lives of their carers:

It serves as a good counter-balance to the sanitised view  -  a little old lady who has a bit of difficulty remembering things  -  that is so often presented via the media.

Thursday, 23 October 2014

Paying GPs £55 for diagnosing dementia

Readers in other countries may not be aware of a news story that is currently causing some controversy in the UK,  There is a proposal that GPs should be paid £55 for every case of dementia they diagnose (as I understand it, the money would go to the practice rather than to the GP personally).

Amongst the points that have been raised:

* Why should anyone be paid more for simply doing their job which diagnosis is part of?

* In reality when GPs suspect that a patient may have dementia they will normally refer them to a memory clinic/service for tests and scans and, hopefully, a confident diagnosis.

* There is anecdotal evidence that some GPs fail to spot the signs of dementia, particularly in younger people and, certainly, it would be unwise to assume that a GP can make an accurate diagnosis of the condition.  I've read of two cases recently where people have been wrongly diagnosed as having dementia.  In one case, a woman sold her house to pay for care and spent over a year in a care home before the error was discovered.

* A distinction needs to be made between a diagnosis of the condition we call dementia and a diagnosis of one or more of the diseases that cause the condition. If it's clear that the diagnosis of dementia is not always easy, diagnosis of the disease(s) can be very difficult. It is true to say that a definite diagnosis can only be made post mortem  -  if then.

* Is it wise to rush to diagnose people with a condition for which there is no cure and for which the only treatments are, for many people, inadequate or worse?
I've discussed this in earlier posts which you can find by using the search box (top left).

* Many people living with dementia, and their carers, feel that adequate support post-diagnosis should be the number one priority.  There's also a fear that a rapid increase in the number of diagnoses made will simply put more pressure on support services which are, in many cases, already falling apart or non-existent.

Thursday, 16 October 2014

Fast diagnosis - a bit of a reality check.

I've written before about various aspect of diagnosis (try search  -  left top corner  -  if you are interested).

This story is a little worrying:

The story is a useful reminder that the diagnosis of dementia, and more particularly the diagnosis of a specific disease, is not always as straightforward as the current demand for fast-track diagnosis would suggest. As the quoted dementia specialist says, it's a bit of a reality check.