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.

Early diagnosis

I have touched on this before, but I still feel strongly that the emphasis placed on early diagnosis of dementia is not necessarily helpful. I'm really talking about attempts to diagnose the exact type of dementia which is deemed necessary but is often much more problematic than people realise. I read regularly about people who have been 'diagnosed' after seemingly minimal investigation. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 or 12 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he was a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped S and she had some unpleasant side-effects.

I would just advise other carers to concentrate on what the person they care for can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now, but life goes on. I hope you will have many more years together.

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.

Madness

I've read online about a disturbing way in which multiple drugs are sometimes prescribed for people living with dementia. This is how it goes, based on an actual example. The first drug is prescribed to deal with dementia symptoms. The person then becomes violent. A drug to reduce the violence is prescribed in addition. The person now starts having frightening hallucinations. A third drug is added, an anti-psychotic which causes the person to become zombie-like. Now, if the first drug has clearly not worked in the way it should have done - which is often the case - surely the obvious, sensible, logical thing to do is to stop it. Instead, the situation is complicated and compounded by the addition of another drug which also worsens the situation. And then another drug is added. Which worsens the situation further. I wonder what the record is for the number of drugs prescribed in this kind of sequence?

Medication frustration

There's a post today from the Alzheimer's Society: http://forum.alzheimers.org.uk/showthread.php?63405-Statin-found-to-prevent-memory-problems-caused-by-surgery

Apparently, the commonly prescribed statin, atorvastatin, has been found to reduce inflammation in the brain that occurs after surgery in mice, which can lead to post-operative decline and Alzheimer’s disease.

This could be good news.

But if you google 'statins' you'll find that these drugs, which are prescribed on a massive scale, are possibly implicated in the development of 'memory problems' and everyone knows that memory problems are often the first sign of the onset of dementia. It's a bit like the way in which some drugs which are presribed for a particular condition, include that very condition (as well as many other unpleasant symptoms) amongst their possible side-effects.

 What are we to think?

Belts and braces

I am interested in some of the ideas discussed by Dr Mary Newport, and  her website is worth a look for anyone interested in alleviating dementia symptoms. This link will take you to a document which itemises the improvements she has noted in her husband since she has been giving him coconut oil:
Click here to download the Word document (you'll open a box allowing you to save it wherever you want to.)
One could fairly say that Dr Newport majors in coconut oil.

The problem though is that, in addition to the coconut oil, she has been giving him any number of dietary additives/supplements as well as several conventional drugs. Among the drugs, she has been using Valaciclovir, which is a supercharged version of the anti-viral drug Aciclovir, which S has been taking during the time when she has made marked improvements. So Mary Newport also believes that the herpes virus might be a contributory factor.

With an approach that involves so many different belts and three kinds of braces it would seem quite impossible to separate out the factors(s) responsible for the improvements. One can easily understand the thinking  -  let's try anything that might help  -  but is it really necessary, or desirable to take them all at once?

Also, I can't find much about the kind of life Mary and Steve lead. This could also be relevant.

Postscript

The passage quoted in the previous post continues with a description of the mother's distress and confusion  - she is left to cry herself to sleep.

The daughter concludes:


It could be that she needs a change in mood medications.


Or (this my suggestion) a thorough review of all her medication and possible interactions and side-effects, with a view to discovering whether the complex cocktail is responsible for, rather than ameliorating, her 'mood'.

No comment required...

Mom hasn't been feeling good the last couple days,

I wonder if her medication has something to do with it.

She takes:

Propulsid 20 milligrams, twice a day

K-Dur 20meq SA TAB, once a day

Synthroid 0.025 milligrams, once a day

Imdur 30 milligrams, once a day

Procardia XL 60 milligrams, once a day

Prilosec 20 milligrams, once a day

Aspirin 325 milligrams, once a day

Betagan eye drops, two drops for each eye, twice a day

Trinsicon/Ferocon, once a day

Paxil30 milligrams, once a day

Neurontin 100 milligrams, once a day

Nizoral (cream), once a day

DitropanlOxybutynin chloride 5milligrams, twice a day

Extra-Strength Tylenol; once a day

(This is taken from David Shenk's book 'The Forgetting')

Something to think about

If S was on one of  the drugs used to treat people with dementia  -  which she could be  -  I and the professionals would no doubt be absolutely convinced that the recent improvements have been brought about by the medication.

When you look at the 'small print', even the drug companies often only claim that a minority of people taking the drug will show any benefit. If the improvement for some of these patients is actually brought about by something else, the drugs are even less successful than they would appear to be (i.e. they're not very successful at all).

Another interesting drug?

A recent article suggests another fairly common drug that might be useful in treating Alzheimer's (as well as in treating Schizophrenia). I'm particularly interested in the reference to its apparent ability to alleviate symptoms such as auditory hallucinations which is the most debilitating symptom that S suffers from since it makes concentration on anything other than the hallucinations very hard.

Another breakthrough?

This will be really familiar to anyone in my situation.  Some research is announced which seems to promise, at some point in the distant future, a 'cure for Alzheimer's'.  This one was the lead item on Channel 4 news last night (but if the BBC covered it I missed it).

It is exciting that a new avenue for research has opened up.  But immediately you start to calculate the chances of your loved one surviving long enough to benefit  -  not great.  Then you note that the drug in question has serious side effects.  In S's case this is very bad news as she almost always seems to get whatever side effect are going with any 'safe' drug   -  and often fails to get any benefit either.  Then it's always a worry when the researchers, as in this case judging by their astonishment, have no idea how the drug works.

Then you remember that there is no agreement as to whether the amyloid plaque, which the drug seems to remove in the brains of mice, is actually the cause of the dementia.  Some researchers have suggested that it may not be a good idea to remove it even if you could.

It is interesting to note that in this case the researchers are claiming that removing the amyloid material did result in improved behaviour and memory because the recent stories about a 'wonder vaccination' seemed to stall with the discovery that the vaccine removed the amyloid but did not restore the memories.

And a spokesperson for the Alzheimer's Society is always wheeled on to warn against false hope, in this case stressing that what happens in a mouse's brain is not always comparable to what happens in the much more complex human brain.

Most likely we won't hear anything more about this for quite a long time.  Remember my recent herpes post about the exciting research from at least five years ago that appeared to show that a cheap and 'safe' anti-viral drug, Aciclovir, could have a similar effect to this skin cancer drug now being hyped?  By and large this has got us nowhere yet.

One thing's for sure.  There'll be yet another 'breakthrough' tomorrow.  Or next week.

In the meantime, we struggle on.

The drugs don't work

Well, not quite true but it does seem to be the case that the best known drugs used to treat dementia symptoms are pretty poor. People carry on prescribing them and consuming them because what else are they going to do?

These two examples are from the Alzheimer's Society website:

What are the benefits of cholinesterase inhibitors?

In clinical trials of all three cholinesterase inhibitors, people taking the medications performed better on memory and thinking tests than those taking a placebo, or inactive substance. The degree of benefit was small, however, and more than half of the recipients showed no improvement at all.

What are the benefits of memantine?

One clinical study showed that people taking memantine showed a small but statistically significant improvement in their mental function and ability to perform daily activities. But study participants with lowest cognitive functioning showed no improvement on either daily activities or overall function.

This kind of thing makes it all the more puzzling that there's a big campaign to encourage people to come forward and collect their diagnosis so that they can be 'helped' - presumably with these and equally pathetic drugs.

A pretty good day

Guess what? The meeting with the Young Onset people was very positive. First they saw S at her most dire as she had fallen and hit her head, not badly I'm glad to say, and I was just attending to this when they arrived. She was sprawled on the floor in a very uncomfortable-looking way and just told us all to go away. She appeared to be 'worse' than they would have expected from reading the notes.

They had a number of proposals:

a referral to a nutritionist for advice (via the GP) on what is now almost an eating disorder (it's very hard to get her to eat and drink at all)

a carer assessment for me, to discover what my needs are

a fresh psychiatric assessment for S in the light of all the recent changes

advice and action from 'aids and adaptation' people, e.g. extra stair handrail, changes to bathroom etc

a brokerage system which would put us in touch with trained and vetted people we could employ on an hourly basis to e.g. come and put S to bed and watch over her, particularly if she does not go to bed, while I could get a good night's sleep

a sensory team who can advise on things that would compensate for the visual and perception problems, e.g. they can test for which colour crockery is most likely to be most easy to see

help with assistive technology - sensors and alarms to alert me to problems when I'm not in same room

So lots of things to go at. I've started on some of them today.

The final thing that interested me is that it was suggested that a couple of the drugs S tried, without effect, in the earlier stages, might be of more use in slowing down the progression in this stage, though I'm still very wary about drugs after the wretched experience with Amitriptyline.

S had one of those evenings when she calms right down. She enjoyed watching a Simon and Garfunkel DVD, singing along, and later in bed she was talking and singing with the positive crowd - no sign of the ones she is always telling to get out.

Dementia timebomb hoax

The media are full of this today. It's not a hoax in the sense that there isn't a massive problem further on down the road as more and more of us live longer and therefore more and more of us suffer from dementia, but the emphasis of this campaign launched today is the need to get a diagnosis and then.............what?

This perhaps.

You never know what to expect

And that's one of the most difficult things that you have to live with if you're caring for someone with this condition. At a recent consultation with the Professor to discuss the latest decline, we mentioned that S does now seem to have symptoms of depression, not really surprisingly. Knowing that S is very sensitive to any kind of medication - she very often gets side effects - he said he would review her history and suggest something to the GP that might help with her mood. We duly got a call to say that a prescription was ready for collection.

When I looked at the possible side-effects of the medication, I was amazed at the number of them and was struck by how many of them were things S already suffers from at times and also, and this is an odd thing about many drugs, that some of the side effects would be difficult to distinguish from symptoms we were trying to alleviate, e.g. 'feeling confused, difficulty concentrating, feeling disorientated (not knowing where you are), delusions and hearing or seeing things that are not there (hallucinations)' - just what you need more of when you have this condition!

Anyway as the dose recommended for S was less than half of the normal adult dose, I thought it unlikely that there would be side effects. Needless to say, I didn't mention the side effects to S.

She'd had a good day, one of the best for a while, fairly lucid and aware. I gave her this small dose before bed.

In the morning she woke up to go to the loo, then I helped her back to bed. She was quite lucid at this point, though she did tell me several times that she just wasn't right. I came downstairs, and left her to sleep, as I often do. The next thing I heard was a scream, 'Get out! Get out, all of you!'. At first I thought it was the woman next door as she has three kids and often shouts at them like this. I'd heard her shouting at them to eat their breakfast, as usual, but hadn't paid attention to anything else she might have shouted.

When I heard the same cries repeated, I realised it was S and rushed upstairs. She was lying quite still, apparently asleep. I was puzzled, but left her to sleep.

The next time it happened, I went straight up and she was sitting up in bed. I tried to comfort her, verbally, and she screamed to me to get out, which I soon did. All went quiet and there were one or two further outbursts. Eventually I heard her moving about. I went up and she was much more 'normal' though she had some idea of what had been happening and was a little anxious, understandably. By this time I had spoken to the Memory Clinic and was told that if it was the medication, the effects should pass in a day or two. They advised me to stop giving her the med (which I'd already decided to do).

I told S all this and reassured her. For the rest of the day, I didn't let her out of my sight. We mostly watched music DVDs and she was fine, just like she'd been the day before. At one point when I was helping her with the toilet there was a brief recurrence, aimed mostly at me, which quickly passed.

This morning, just as I was thinking that we were probably out of the woods, I heard again the familiar words, 'Get out! Get out, all of you!' But this time it definitely was coming from next door! Our neighbour had her front door open (right next to our front door and almost directly under our bedroom) and was clearly trying to hurry her kids out. She repeated the words, word for word, several times, increasing the volume each time, then slammed the door - they always slam it.

A few minutes later, I heard S! She was using the same words, with a few bloody hells thrown in. This time I let it run its course and phoned the Memory Clinic (they'd asked me to report back). I was told again that it might take a while for any effect to wear off. I was slightly reassured. Eventually S came out of the bedroom. I was able to discuss it with her quite rationally and to reassure her that we should soon be out of the woods. We had what passes for a normal day. There were two occasions when I thought she was going to start up again, but they passed in an instant.

Now I'm bracing myself for what might happen tomorrow, wondering whether next door will be a bit quieter or whether, as S has gone to bed very early tonight, she'll wake up before the next door kids have to leave for school and the lack of this 'trigger' might eliminate the problem.

It's all just so weird. Sometimes you start to doubt your own sanity.

There's usually something good to hang on to though. We have talked a lot during the day about this latest problem and S keeps telling me that she is really trying hard, and she is, usually quite successfully.