HSV-1 and Alzheimer's disease: more than a hypothesis.

A recent article with this title (also discovered on Alzforum) is summarised here.

Revisiting the link between the Herpes Simplex virus (HSV-1) and Alzheimer's Disease

Regular readers will know that I am very interested in this link.  New readers can find several past posts about the link by putting HSV-1 or herpes into the search box (top left).

I get the weekly newsletter from the excellent Alzforum Network.  For some reason, I searched their database today and found that Professor Ruth Itzhaki, who has done so much to research and publicise the link has very recently published a paper which updates the information that I posted here.

A summary of the new paper can be found here.

There are also some other papers that look interesting.

I never claim to understand all these papers but I think it's still possible to get the gist of them. If you've not come across the discovery of this link you may well be surprised that it is not better known.

Alzheimer's and Parkinson's - an update

The appointment was useful. I was impressed by the specialist. Prior to meeting us he did the usual speed-read of 'the notes' of course (just the notes since the diagnosis when my S was transferred to the care of the Adult Mental Health Team). He started by saying that the AMHT guy we see had noted that my wife has Lewy Bodies Disease (she hasn't - the diagnosis is Alzheimer's). When I queried this he said he thought it best to forget about labels - a man after my own heart.  (But I'll query this with the AMHT.)

He quickly identified that, as suspected, my wife has several Parkinsonism symptoms e.g. rigidity, 'cogwheel' unbending of arms. He thought on balance it was worth trying a very low dose (initially one 12.5/50mg tab a day) of Co-careldopa. I'd told him about my wife's extreme sensitivity towards many drugs. He said that because of the low dose and the short half-life of the drug (2-4 hours) any serious problem would be very unlikely but, obviously, we should stop taking it if there were any problems.

This dose may not produce any improvement but will show if the drug is tolerated and then the dose could be upped later. Someone once told me 'start low and start slow' is a good policy for most drugs you've not taken before.

So, I started today when nothing else is planned.  We have had a short walk so far, about 3/8ths mile.  It was about as good as it gets at the moment  -  we didn't have to stop at all. No adverse effects are apparent.

We will also get a visit from the 'falls team' who might be able to suggest some exercises that could help.

The specialist also mentioned that a Datscan (relatively new) could confirm whether S has some kind of Parkinsonian syndrome but agreed that this would be something of an ordeal for someone with S's problems and that as he could already see the problems she has we could just get on and try to treat them.

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