Thursday, January 23, 2014
Diagnosis day.
I think I will look back on today as a good day.
It certainly hasn't been a life changing day.
I have learned nothing new about Bill's condition - just had it all confirmed.
Dr Czerodi began by talking about the way Bill's brain has degenerated in the frontal lobe. Jamie and I had worked that one out for ourselves - we needed no MRI scan results.
But my pride in my analysis waned somewhat when the doctor said that Picks Disease (as this can be called) is not really good news because there is no medication to make any possible improvements.
It is probably a good thing, therefore that there is also evidence of Alzheimer's Disease.
Scary words!
Scary - like the word cancer. No hope words.
But for the immediate future there is medication - several options.
We begin with donepezil - also known as Aricept.
Bill takes the first tablet tonight before bed time.
Side effects are quite common - mostly nausea, headache and gut issues. Maybe he will be lucky - maybe not. He begins on quite a low dose.
This medication is prescribed to help with the memory loss and can also help somewhat with behaviour.
A friend tells me that it is similar to her son's medication for Tourette's syndrome.
The doctor, a psychologist, was observing Bill very carefully the whole time.
She then suggested that some of the repetitive rhythmical noises could be triggered by autistic tendencies.
At which point I told her that I had felt sure for some time, that Bill demonstrates behaviours and attitudes which put him very much on the positive end of the autism spectrum.
It has caused some difficulties in relationships, but Bill has always functioned as busy working man.
So, we have a complex brain inside Bill's head and one which is no longer functioning properly.
In four weeks time Bill will be seen by the Alzheimer nurse and also a nurse in charge of prescriptions and medication.
If Bill has coped well with the low dose donepezil he may be put on a higher dose.
I doubt that we will be seen by the doctor again for a long time.
She is so over stretched that she can only see people for their first appointments after diagnosis.
I just don't know how much of all this Bill has taken on board.
Up until now I have used the words "memory problem" or "Picks Disease" and more latterly "dementia".
He refers to it all as "just me being silly".
Today may have been the first time he has heard the word "Alzheimers" in relation to himself. And I know that this morning he didn't take that it.
Later, in la Rusta, I went through the appointment again with him, explaining all that had been said.
I thought in a friendly atmosphere where he might be more on his best behaviour might be the best place to go through it all.
Still, I don't think he understood.
Did he really understand when he queried, later this afternoon, my use of the word "Alzheimers"?
"I haven't got that!"
I have discussed driving with the doctor. Her opinion is that if the DVLA allow him to keep his license then he is free to drive.
I must contact them tomorrow.
I also want to check where we stand with car insurance.
The DVLA can arrange practical tests. I will ask about this. I would rather pay for that in the hope that Bill could more happily accept the results or maybe just happily be allowed to continue to drive a little longer.
To be fair to other people I should drive when we have any passengers in the car - whatever is decided.
So, there we are.
We are a little further forward......but going forward is scary for me.
There is a long dark tunnel which I have no choice but travel through.
I must plan ahead a bit but at the same time live one day at a time.
There are many people whose tunnels are longer and blacker.
Life is not as I would want it......but it is the only life I have. I must strive to make it the best living I can manage for me and Bill.
I am coping today.
I will probably be coping tomorrow too.
The days of not coping are in the future - a strange place that I, as yet, know very little of.
It certainly hasn't been a life changing day.
I have learned nothing new about Bill's condition - just had it all confirmed.
Dr Czerodi began by talking about the way Bill's brain has degenerated in the frontal lobe. Jamie and I had worked that one out for ourselves - we needed no MRI scan results.
But my pride in my analysis waned somewhat when the doctor said that Picks Disease (as this can be called) is not really good news because there is no medication to make any possible improvements.
It is probably a good thing, therefore that there is also evidence of Alzheimer's Disease.
Scary words!
Scary - like the word cancer. No hope words.
But for the immediate future there is medication - several options.
We begin with donepezil - also known as Aricept.
Bill takes the first tablet tonight before bed time.
Side effects are quite common - mostly nausea, headache and gut issues. Maybe he will be lucky - maybe not. He begins on quite a low dose.
This medication is prescribed to help with the memory loss and can also help somewhat with behaviour.
A friend tells me that it is similar to her son's medication for Tourette's syndrome.
The doctor, a psychologist, was observing Bill very carefully the whole time.
She then suggested that some of the repetitive rhythmical noises could be triggered by autistic tendencies.
At which point I told her that I had felt sure for some time, that Bill demonstrates behaviours and attitudes which put him very much on the positive end of the autism spectrum.
It has caused some difficulties in relationships, but Bill has always functioned as busy working man.
So, we have a complex brain inside Bill's head and one which is no longer functioning properly.
In four weeks time Bill will be seen by the Alzheimer nurse and also a nurse in charge of prescriptions and medication.
If Bill has coped well with the low dose donepezil he may be put on a higher dose.
I doubt that we will be seen by the doctor again for a long time.
She is so over stretched that she can only see people for their first appointments after diagnosis.
I just don't know how much of all this Bill has taken on board.
Up until now I have used the words "memory problem" or "Picks Disease" and more latterly "dementia".
He refers to it all as "just me being silly".
Today may have been the first time he has heard the word "Alzheimers" in relation to himself. And I know that this morning he didn't take that it.
Later, in la Rusta, I went through the appointment again with him, explaining all that had been said.
I thought in a friendly atmosphere where he might be more on his best behaviour might be the best place to go through it all.
Still, I don't think he understood.
Did he really understand when he queried, later this afternoon, my use of the word "Alzheimers"?
"I haven't got that!"
I have discussed driving with the doctor. Her opinion is that if the DVLA allow him to keep his license then he is free to drive.
I must contact them tomorrow.
I also want to check where we stand with car insurance.
The DVLA can arrange practical tests. I will ask about this. I would rather pay for that in the hope that Bill could more happily accept the results or maybe just happily be allowed to continue to drive a little longer.
To be fair to other people I should drive when we have any passengers in the car - whatever is decided.
So, there we are.
We are a little further forward......but going forward is scary for me.
There is a long dark tunnel which I have no choice but travel through.
I must plan ahead a bit but at the same time live one day at a time.
There are many people whose tunnels are longer and blacker.
Life is not as I would want it......but it is the only life I have. I must strive to make it the best living I can manage for me and Bill.
I am coping today.
I will probably be coping tomorrow too.
The days of not coping are in the future - a strange place that I, as yet, know very little of.
