Tag Archives: side effects

When a simple cold becomes a big deal

Having  had a stupid cold for the last 3 weeks made me think of the ‘nuisance’ analogy of having a cold and comparing it with some of the symptoms of Alzheimer’s that people can share with me and that everyone can relate to. It’s not the feeling unwell, it’s the nuisance of the extra symptoms a cold causes. The nuisance of the fuzzier head becomes a bigger problem. I’m sure you’ve all experienced a head cold – where the head feels foggy, fuzzy and heavy – welcome to our daily world. When you have a cold on top of what’s normal it becomes even more difficult to find the right words. I can understand now how simply feeling under the weather can now take on a different meaning.

Questions were also asked as to whether the extreme symptoms were being caused by the trial drugs. The constant headache for a fortnight. The sinus pain. There’s just no way of knowing. What do you treat? All very confusing and wears you down if you let it. So now I’m on antibiotics to try to treat the sinus pain I’ve had for 2 weeks – yes, I know we’re all suppose to reduce the amount of antibiotics we’re using, but this appears to be last chance saloon time. If that doesn’t work I may have to reconsider whether it’s the trial drugs and stop them instead……

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What it’s like to have dementia on a bad day

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I haven’t, by any stretch of the imagination, had a horrendous day but I have had bad days and I know worse are to come.Recently I had a bad day where Alzheimer’s won for those 24 hours – I think I got my tablets muddled (or at least I hope that was the cause) and I know not to do it again.

I don’t know if I’m alone in thinking that you can feel the difference in your head when you’re having a bad day. I’m convinced you can ‘feel’ the disease inside your head. Your head feels inflamed and fuzzy.
The analogy of dementia used in Dementia Friends training is that of Christmas tree lights. When you get them out each year some don’t work or there are loose connections – it really is like that. My consultant, knowing I worked in IT, likened it to the amount of memory on a PC and how that affected performance. What he didn’t consider is that, even though I’ve worked on an IT system for 10-15 years, I still ‘don’t do technical’. For example, if my PC seems poorly I ask one of the team to take a look at it! I think I’ll stick with the fairy lights – I understand that analogy…
Imagine going in and out of consciousness – it can be like that – one minute you know exactly what you’re doing and the next you haven’t a clue what you’ve just done. I’ve also now found a way of dealing with the hallucinations that are mainly induced by the drugs (I hope!). At present these usually happen in the night – or at least I think they do! I wake up in the night and see and hear the most weird things. ‘The ‘weird’ is the clue. If my mind isn’t sure whether it’s reality, or if it seems odd, I tell myself it’s simply the drugs playing tricks and accept that it will soon go away. The ones that catch you by surprise are harder to decipher. I had in my head one night that my mum was alive. My mum has been dead for many years. I had to fight with my mind for a good few minutes before winning and coming back to reality.

The feeling of mental exhaustion becomes a regular occurrence as I’m continually trying to fit in with normality. I always fall asleep on the bus on the way home from work. It’s a 90 minute journey. I used to sit quite happily listening on my headphones to the radio. Now my brain is simply exhausted from the simple task of listening and trying to take in everything at work. On bad days I tell myself that tomorrow will be better and at least for now, I can decipher the good from the bad and make the most of the good – for that, I’m thankful:))

My bus ends up on the coast – one day I’m sure I’ll wake up and see the sea –ha!

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Getting the right medication

It’s 3am when I’m writing this blog – don’t worry, I won’t click ‘publish’ until a sensible hour as you may stop reading if email alerts come through in the middle of the night!

I’m taking Donezepil – a drug they believe will slow down the progression of Alzheimer’s –  it has a long list of  side effects including insomnia, hallucinations and tiredness……..well, they were right there. I really, really, really am grateful to those marvellous researchers who developed the drug. I just wish there was a way  you could produce medication without such side effects . I know that’s an obvious statement and I’m sure there will be biochemists out there chuntering, ‘if only she knew’!! There will be amazing people out there beavering away at reducing side effects I know, but to experience them makes living with a  condition even more miserable. At 3am in the morning, the advantages of taking a wonder drug pales into insignificance when compared with the side effects being experienced at the time, so I’m sorry if I sound ungrateful.  It’s always made me laugh when medication for the elderly and confused has ‘diarrhoea’ as a symptom – the very thing that can make life miserable for the individual and carer alike..

Whilst I’m glad that all the talented individuals out there are dedicated enough to work on finding new drugs for dementia, it would be really useful if more work could be done on reducing side effects that, at this already difficult time, exacerbate the problem. Exhaustion through lack of sleep, continual headaches, insomnia etc. etc., none of which were present before, now cause new problems.

I realise there will be perfectly sound scientific reasons why you can’t have  drugs without side effects and the side effects may appear minor compared with the disease, but, oh, for the best of both worlds to exist. The talented individuals who tirelessly work towards new discoveries would get a HUGE brownie point from me (and I’d even bake them my infamous lemon drizzle cake)  if they could work on reducing side effects associated with drugs. End of 3 am rant………tomorrow’s another day……….or is it today?

PS: On a lighter note, I’ve started a gallery to share photographs of people and places I love. You can find it next to the ‘Home’ button 🙂