Living well with drugs and dementia
When I was diagnosed with mixed dementia I was given the option of taking Donepezil for the Alzheimers part. Nice says you can only have it if you have an Alzheimers diagnosis.
And it made a huge difference to me.
Woke up my brain.
The symptoms my wife had noticed, some of which I had been very aware of, subsided within days.
My conversation became less hesitant.
I found words more quickly again.
My behaviour was less uninhibited (I am told).
I remembered things better.
And I felt like the old me again.
But don’t forget I only got this drug because I insisted my GP refer me to the memory service, against his own advice. At the third time of asking.
There’s nothing we could do that we’re not already doing…
What’s the point?
I must admit that in the last week I have begun to notice little lapses again, but we’ll see where that goes.
Couldn’t remember my phone number today…keep forgetting to do my shoulder exercises…things just disappear into the ether.
Of course, with vascular dementia, and a history of heart disease, I was on statins. In fact, to get my cholesterol down far enough I had progressed up to the maximum dose of Atorvastatin.
I had been telling the GP for a couple of years about becoming unable to take exercise, getting muscle pain, getting very short of breath. I thought it was my heart giving out. And he did not dispute this.
Well, what can we do? You’re already on everything, and we’ve been through several alternatives.
So I see a different GP. By chance really.
And he thinks, and reflects, and looks through my notes and medications…
Let’s try dropping the statin for a month. It won’t make any real difference to your cholesterol, but might reduce your symptoms.
Yes please, if it will work.
I’ve read tons of pieces about people who reacted badly to statins, and always thought, well how lucky am I?
Two days later I felt hugely better.
A week later I am a new George again.
So the GP suggests trying a different statin which might not affect me.
Two days later, back to pain and weakness. So I stopped.
Let’s try one other, because it is important to keep cholesterol low.
Two days later, back to pain and weakness. So I stopped again.
This time it was my choice.
I’d rather die of a heart attack after five years of good active life, than live a miserable life and last an extra ten years with vascular and alzheimers dementia.
Thank you very much.
So that’s my choice.
It’s a pity it wasn’t more of a shared decision making choice, although when I got to the third failure with a statin the GP agreed that life quality was more important.
And of course for me, with dementia, there really is no point in trading off active life now for longer life later.
What I suppose irritates me is that it took a long time to get to this point.
In both cases, dementia diagnosis and statin use, I was being done to, I was being told that the GP knew better. I was not being listened to.
I know this is my hobbyhorse. And I’ll go on saying it.
Put me in control.
Don’t do health care to me…do it with me.
It really is easy, if you just change the paradigm.
(That’s another favourite at the moment. Fab word)
Listen to me, to what I am telling you.
Tell me my options and likely consequences.
Give me information about non medical things I can do.
And give me a bit of support to manage my health.
There you go.