Tuesday, February 18, 2014


Front temporal lobe dementia and aricept.

It has been a good day - a productive day.

But things began with the fact that I had not been diligent. I don't check the answers on the answerphone often enough.
Today I did check and found one that I should have heard last Friday afternoon.
It was from Nurse Lucy, the Alzheimer's nurse.
If I had heard it, I need not have suffered pangs of guilt and fears of meeting up with perhaps a second rate prescribing nurse,
You may recall that I discovered that the drug Aricept, is not only unsuitable for those with front temporal lobe dementia (from herein referred to as FTD). but could well be harmful.
What should I do?
A doctor had prescribed it, but I was gleaning evidence that she shouldn't have done so.
I decided at the weekend that a few days without it wouldn't hurt.
I worried about how I was going to explain it to the prescribing nurse.
If I had heard the message left for me I would have realised that Lucy and the prescribing nurse had discussed Bill without delay and that Colleen, the prescribing nurse, advised that Bill should stop taking the aricept.
Hell's bells! I had managed to diagnose the original problem without the benefit of an MRI scan and I had also diagnosed that Bill was on an unsuitable drug.
This does leave me not really trusting the judgement of the doctor who we saw......a consultant pyschiatrist.
I said at the time that I was worried because she was very keen to hand over leaflets about a very expensive supplement which manufacturers have promoted as being of benefit to Alzheimer's sufferers.
I wondered what her bonuses would amount to.
And now I know that if Bill shows any evidence of Alzheimer's it is only because the FTD has already begun to affect other parts of the brain.
Did she slant her diagnosis towards the pathway whereby if I was a sucker she could add to her bonus?
This I will pursue. I want other people to know my opinion!
And, of course, I now have far less worries about meeting Colleen. She is obviously on the ball. I want to ask her if it is possible for Bill to be seen by a consultant neurologist. I would pay for a private consultation to have that extra opinion.

Today I contacted the FTD support group. This evening I had a lovely phone call with a woman from that group.
Her husband had FTD.
No two people are the same - but there was so much in common.
It felt quite wonderful to hear that somebody could almost end my sentences because of our shared experiences.
It just felt good to be talking to somebody who actually knew what FTD is.
I almost felt euphoric with joy! And that is pretty damned stupid because the end result is not one I fully want to come to terms with yet.
The woman said that when her husband died it was a blessing for he had no more life in him than a plank of wood.
Bill's brain is dying - it is a terminal disease. But for now he has plenty of life and abilities alongside all the symptoms of what has already died.
I live for the moment, so does he.
Sometimes the moments are hard to cope with for me. But we will make life as good as it can be.

Nurse Lucy also suggested I got involved with a carer's self help group. The group meets monthly in a local church hall........;and the next meeting happens to be tomorrow.
I will be there, meeting people, sharing a cup of tea, talking and listening.
Most of the carers will not have heard of FTD - far, far less common than Alzheimers. But we all will be carers of somebody whose brain is dying.

And this afternoon was good too. We went family visiting. A great nephew and great niece are in town during half term week, visiting their grandmother, Bill's sister.
They are super kids.
Bill enjoyed toddler Jessie's fanatstic smile and the fact that she made no demands of him at all and thought his funny noises were - well, funny!
Caleb is a thoughtful and wordy 4 year old - very philosophical. Great company. And best of all he had made a cake with his grandmother this morning!

Yes, it has felt good today.