Alzheimer's and Parkinson's

Throughout the 11 or 12 years it took to arrive at a diagnosis of my wife's condition, all sorts of possibilities were examined. Among the diseases mentioned were Lewy Bodies and Parkinson's although they, like all the others that had been mentioned, were finally ruled out and we were left with the diagnosis of last resort - Alzheimer's

The tilt which my wife sometimes has - it can be to the left, the right, backwards and sometimes all of these alternating every few days with 'normal' - was observed by the GP after a fall and he thought that this and some of her hand movements might indicate that she now also had Parkinson's or some Parkinson's-like symptoms (though he didn't exactly share this thought at the time). Anyway, we've ended up with an appointment tomorrow with a doctor who specialises in Parkinson's and apparently has a very good reputation.

The little ray of hope, I suppose, is that whereas the handful of dementia drugs are useless or worse for many people (including my wife) it seems that drugs used in the case of Parkinson's are capable of alleviating some of the physical symptoms quite significantly.

I will try and report any progress here as I'm pretty sure that this will be of interest to some readers.

Two myths about dementia

Two ubiquitous myths about dementia are that, once diagnosed, you can't vote and you can't drive.

These Alzheimer's Society Factsheets explain:

http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1780

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=144

(These factsheets discuss the situation in the UK)

Mental or physical?

'If problems in living are due to some brain disorder, then this a physical illness, not a mental illness.'

This is a quote from a letter in today's 'Guardian'.  It's hard to disagree with.

Of course, there are some conditions where it's not clear whether there's a physical cause but most dementia has an obvious physical cause, indeed the discovery of physical signs on a brain scan are now often used to establish a diagnosis.  We know that some people with dementia object strongly to having to attend mental health clinics.  Of course, mental health should not be stigmatised but also people's deeply-held views  -  prejudices even  -  need to be acknowledged.

The statement above should give food for thought to those who unthinkingly categorise all dementia as mental illness.

Herpes and AD - yet again

I've come across yet another article about the link between HSV1 (the 'cold sore virus) and Alzheimer's disease:

http://www.sciencedaily.com/releases/2011/04/110404122203.htm

It's more recent than some of the other research I've seen and posted about.  And the researchers seems pretty 'upfront' about the link.

For new readers, if you wish to see several past posts on this important topic, you can do so simply by putting the word 'herpes' into the search box (top left).

For the avoidance of doubt, nobody anywhere is suggesting that all Alzheimer's disease is caused by the herpes virus.

Disturbing yet moving self-portraits

The linked article is pretty self-explanatory (pity about all the garbage on the page):

http://www.viralnova.com/alzheimersself-portraits/

It's interesting that he was able to paint such expressive self-portraits even when the dementia was quite advanced.

They should make trackers for people

This is what someone wrote on an online forum after discussing the problem of trying to keep track of someone living with dementia who is still mobile.

They do, of course.  Google it if you are interested.

I know that cold fear when you look around and the person you're caring for is no longer there.  Now that S is more settled and doesn't move as fast it is hardly a problem.  But I still have to pack supermarket stuff with one hand  -  the other is holding onto S!  And if I let go she will sometimes set off to who knows where.

Increasingly I answer yes to 'Would you like help with your packing?'.

Falling out of bed

S fell out of bed the night before last at 3 a.m. This has happened once before, probably a year ago, and I had moved furniture to make it more difficult.

It was very scary.  All kinds of things went through my mind.  I was pretty sure she hadn't done any damage.  She walked to the bathroom O.K. after I had got her up on her feet.  I didn't want to put her back into bed until I'd had a chance to work out a foolproof system for averting a fall so I made a bed of folding duvets on the floor. 

Pretty quickly she appeared to be sleeping peacefully and occasionally snoring.

But I didn't think I should sleep in case she'd done some damage that wasn't obvious.

After getting some reassurance from members of the Alzheimer's Society Talking Point forum (yes, at 4a.m.!) I decided it probably was O.K. to sleep.

Next day I let her sleep a bit later and once awake she appeared 'normal'.

But it could have had a very different outcome.

I'm determined it won't happen again.  I've moved a chest of drawers so that the back of it, lengthways, is right up against the bed.  I'm sure this will work but I'm aware that there are various aids available to ensure safety in these situations and I'm going to try and speak to an Occupational therapist about them.

The passport photo

A couple of days ago, I realised that S's passport had expired.  I could not believe it was 10 years ago that we got the last one.  It was a bit scary as, for the benefit of non-UK readers, our passport service has been extremely inefficient recently (probably because the Government cut their budget for staffing).  We are due to go off on a foreign trip in our small motorhome in five weeks.  Normally passports are issued within three weeks of an application but, to be reasonably confident that we would get her passport back in time for the holiday, there was a bit of  a panic  -  which S was spared (one of the small compensations of living with dementia is that these crises seldom register).

I was able to complete and sign the application form on her behalf but there was the small problem of the new photo.  Clearly a photo-booth would not work.  In a booth on her own there would be little chance that a usable photo would be produced.  We settled for a small photo shop not far from the house.  Fortunately, my stepdaughter accompanied us, though she did have to cope with her own 6 month-old daughter, just to complicate the situation.

The shop was very small and there was a queue.  We waited quite a while.  Then as we were starting to try and get the photo done, more people came in.  The female photographer was very nice and patient.  Both S's daughter and I were trying to get her to open her eyes.  S was in no way intentionally unco-operative. It was just that for some reason she would not open her eyes.  I've mentioned before, I think, that much of the time her eyes are closed or half-closed. Usually, she will open them when asked.  Anyway, it looked pretty hopeless and she also nodded her head up and down from time to time which certainly didn't help.  Eventually, the photographer said she would deal with some of the customers (who were showing signs of impatience) and try again.

The second attempt was just as difficult but then somehow the photographer caught her with her eyes open.  She looked at the picture before printing it out, made a few adjustments and said that it would be acceptable.  Whew......

I wonder what people who can't get a good photo, for whatever reason (e.g. a tremor) do?

Anyway I took the photos and the form into the Post Office where they do a 'check and send' service, for a small fee.  The clerk accepted it all and sent it off.

Now we wait.

If anyone out there needs dementia help

It occurs to me that it might be useful to post links to two extremely valuable sources of help and support which I may have mentioned before. These particular links will be of use to English readers only.

Admiral Nurses are mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Read more here:

http://www.dementiauk.org/what-we-do/admiral-nurses/

Towards the bottom of the page there's a link to a direct phoneline number in case you don't have Admiral Nurses based near you.

The Alzheimer's Society can also be very helpful.  This link will help you find your nearest branch:

http://alzheimers.org.uk/localinfo

Alzheimer's 'breakthroughs'

These come along pretty regularly and are announced, and re-announced, with great fanfares.

The BBC have run with three of them, as main news headlines, in about a week. First there was the 'new' blood test (which has certainly been mentioned before). Here's an interesting take on it:

http://www.todmordennews.co.uk/news/health/blood-test-for-alzheimer-s-no-better-than-coin-toss-1-6721224 

This morning the main headline on the Breakfast Programme mentioned two tests, one which would involves cells from the eyelids and one that would test sense of smell.  There doesn't seem to be a current online link but a Google search suggests that both have been mentioned by the BBC before.

Of course, the 'small print' always tells you that the tests won't be ready for general use for years, if at all.

And it's sadly also the case that there is no cure for Alzheimer's  -  existing treatments, at best, help with some symptoms but cannot slow down the progression of the disease.  Between 2002 and 2012 99.6% of trials of drugs aimed at preventing, curing or improving the symptoms of Alzheimer's failed or were discontinued. (BBC website article)

So these really aren't breakthroughs in any meaningful sense.  Unless you regard thousands of people knowing they are destined to develop a terminal disease as a breakthrough.

A deeply moving story

This dementia related story is becoming an online sensation and many people in the UK and beyond will be aware of it, but I didn't want anyone to miss it so here it is:

http://www.bbc.co.uk/programmes/p0223027

I don't think any further comment from me is necessary but please feel free to comment yourself if you wish.

Comments on Cameron's latest speech about dementia

As promised, some thoughts about the various points he made:

'The prime minister was speaking to an audience of 300 experts who have pledged to find a cure by 2025.'

Here again we find the all too common confusion.  Have the experts really pledged to find a cure for dementia (i.e. all forms of dementia) by 2015? This seems very unlikely since, as we have mentioned several times on the blog, dementia can be caused by a wide range of different diseases and conditions.

'He said there was a need to develop more drugs and get them to patients more quickly. For that to happen, international collaboration and more money for dementia research was needed, he said.'

It's impossible to argue, though one has to say that unless the 'new drugs' are a lot more effective than current ones they won't get us close to any 'cures'.

''He added: "Something like £50m a year is being spent on dementia research, rather than the £590m spent on cancer. It is important to see dementia as a disease and one that we need to better understand so that we can tackle it." '

Again, dementia is called a disease  -  you'd think someone would tell him, wouldn't you?  But there's no denying that much more money needs to be spent on research.  And there needs to be a broader approach so that it's possible for researchers to obtain funding for work on neglected approaches rather than chipping away at the same coal-face as every other researcher.

' "So much of this is about making sure hospitals and care homes treat people with dementia better and, absolutely crucially, that we build dementia-friendly communities where all of us try and understand better what it's like to live with dementia," he said.'

Amen to this.  But, although there is a long, long way to go, my experience is that almost wherever you go there's a growing number of people who have some understanding of dementia.