Diagnosis again

I know I've posted about this before but I still have very mixed feelings about the importance of a quick diagnosis. Someone asked online how long a diagnosis would take.

I'm afraid it can be as long as the proverbial piece of string.

Part of the problem is that whilst memory clinics can usually decide whether someone has some sort of dementia, it can take a very long time to identify which condition a person has. Dementia can have many causes. Increasingly, as well, clinicians seem to come up with a 'mixed dementia' diagnosis as if covering their backs.

My wife was referred to a well-regarded memory clinic in 2000. She got the following diagnosis in 2011: Probable Alzheimer's disease (posterior cortical atrophy). Probable !! Since then she has had an additional diagnosis of Parkinsonism.

But during the many years of waiting we got on with life as best we could and created many happy memories. If you think a quick diagnosis will help then it might be a case of being careful what you wish for.

Now I know some people can benefit from some medications and that a diagnosis is usually required before drugs are presribed but I also know, from our experience, and from my reading that this is not always the case. S was tried on a number of  meds before she had a diganosis.

A national Dementia Atlas

Apologies if this has been posted about already but I couldn't find it if it has.

The atlas can be viewed here:

https://shapeatlas.net/dementia/#6/52.955/-2.153/l-p65


According to the Guardian, this is just the start of an exercise that should give a lot of information about how different areas perform in their approach to dementia:

https://www.theguardian.com/society/2016/aug/16/new-care-atlas-reveals-disparity-in-dementia-care-across-uk

EDIT: The previous link to the Atlas was out-of-date.

A heartwarming story

This story has, understandably, caused quite a stir. An elderly man with dementia who has been singing publicly for many years is still able to sing his songs even though his dementia often means that he is lost for words when he tries to communicate:

http://www.itv.com/news/granada/update/2016-08-05/heartwarming-video-of-dad-and-son-singing-goes-viral/

A 'breakthrough' in treatment that might actually deliver worthwhile treatment

As we know, stories like this come along all the time but this does sound more promising:

https://www.newscientist.com/article/2099108-alzheimers-drug-that-failed-trial-may-still-slow-disease/

UPDATE:

Sadly this story was shot down almost immediately:

http://www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period

Fit number 6

This one happened about 5 a.m. so no chance of getting assistance unless I wanted to get the emergency services involved. I managed to stay calm enough to quickly hook Sue up to the oxygen and checked the level straight away  -  99% which was reassuring.

I used the Buccolam 'fit buster' prescribed after 5 minutes. On the previous two occasions I've used it I've waited longer but I've read that fits are more serious the longer they go on. Almost immediately there was a change in her breathing for the better and within a short while there were the usual and reassuring small movements.

She's now sleeping quite peacefully  -  the Buccolam has a sedative effect so this is quite normal. Hope to post again soon.

Genetic test could predict people at higher risk of memory problems

This recent piece of research may be of interest:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2625

Brexit Could Threaten Neurodegenerative Disease Research in Europe

The respected US-based Alzforum (Working for a cure) has some thoughts on the potential effects on research of 'Brexit' (the decision by the UK to leave the European Union):

http://www.alzforum.org/news/community-news/brexit-could-threaten-neurodegenerative-disease-research-europe

Sometimes you get nice surprises

Some months ago, I got out our Yamaha keyboard (quite a sophisticated one left here by my younger son Joe) at our care/PS's suggestion. We wanted to see if S would 'play' it. Early attempts were not promising and we didn't really persevere.

Earlier on this week I started making a list of the various ideas we have tried by way of 'activities' for S, as getting her outside is usually very stimulating for her but recent uncertain weather has made this difficult.

We decided to try the keyboard. It was amazing. She sat in front of it and played around for at least an hour and a half. We helped a bit for the first 5 minutes and then we left her to it. At first she was hitting several notes simultaneously but soon concentrated on single notes, leaving regular pauses. The effect was rather like the kind of musical sounds that might be used for a meditation tape or video. It was quite relaxing. The keyboard has many different voices and we had set one that sounded like this anyway but the pauses she left between the notes she played added to the effect. I should say that she has never learnt to play a piano or any other musical instrument.

I would never have believed that such an activity would have lasted so long. Truly a revelation and we decided to see if this can become a regular activity. She has had another session two days later. Her daughter and an old family friend were equally amazed.

It's very easy, when so many attempts to engage a person have proved fruitless, to stop trying. This is a reminder that we should never do that.

Incontinence bedpads

An earlier post (16/12/15) discusses incontinence pads and pants. But as even the best of these are by no means foolproof, many people also use washable or disposable bedpads which can go between sheets and the bed user. These are often referred to as 'Kylies' (actually a brand name). I used to use washable ones until I found disposables that do a very good job of keeping sheets dry and have 'wings' which help to keep them in place. They are Attends Cover-Dri Plus 80 x 170cm and they come in packs of 30. Prices vary so you need to shop around online. I think they are good value, bearing in mind that you will be spending money every time you wash and dry a washable Kylie. Attends and other firms make various sizes of disposable pads but these are the only ones I've found that stay in place (because of the wings).

What kind of fits?

I haven't blogged much recently. I seem to be spending more time checking up on S when I'm alone here and she is resting or sleeping. When the PAs are here, I still spend a lot of time with S.

I'm still very concerned about the 'seizures/fits', particularly their length and apparently increasing frequency. This morning I've found this very interesting website which seems to describe every known type of seizure:

http://www.epilepsy.com/learn/types-seizures

What happens to S doesn't come close to matching any of the detailed descriptions on this site. Also, I haven't searched exhaustively but all the duration times mentioned are much less than the 10-12 minutes which S's events seem to have lasted, though as the event seems to gradually morph into very deep sleep it's difficult to be sure. It's all very perplexing.

Another thing I've picked up from the site is the possibility that Omega 3/oily fish may help reduce the number and duration of seizures. This may be worth trying even bearing in mind the possibility that these are not epileptic seizures

Fit number 5

S had another fit today - the fifth, I think. This time I hadn't even got her up. I was upstairs on the exercise bike and I always have the baby monitor attached to the handlebars. I was suddenly aware that S was making the horrible gargling which I now know means 'fit'. Straight downstairs and no doubt about it. As I have her sleeping in what is just about the recovery position there wasn't much to be done. I felt a little calmer than the last time but it's always horrible being on your own. I tried a few calls to people who might have been available. The first few weren't, but eventually I had a friend, a Carer/PA who was due later and came straight round and S's daughter plus husband and kids. By the time the first of them arrived, things were definitely on the mend and S was in a deep sleep. Every so often there was a bit of drool from her mouth including a faint trace of blood which I reckon was probably because she'd bitten her tongue slightly. After about 12 minutes I gave her the Buccolam spray (prescribed sedative) but not the whole syringe full as she coughed a bit as I squirted it onto her inner cheek.

Don't know how long she slept but she had her first drink not much later than she usually has it (around 10 a.m.) followed by pretty much normal breakfast.

S's daughter and family stayed right into early p.m. and daughter has said to call her straight away if there are any further problems.

There's been some progress in dealing with the fits in a way. After each of the first two we spent most of the day at A & E and weren't much the wiser after all the testing. Following fit 3 we phoned the surgery as the GP had suggested and he came round shortly after. During fit 4 we were able to talk to him on the phone. This time we couldn't even do that because of the weekend but I'm not really worried. Hopefully, we'll have 3 or 4 months before the next one.

Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.