Thursday, June 20, 2013
The AD diary
Another page in the diary of Bill and Paula......
It has been a quiet day really, though we have been out for shopping, medical things and a little bit of socialising.
Today I have been given strong advice that we really must see the GP again about Bill's problems.
Firstly, this morning, I had a call from the National Society dedicated to supporting those with conditions of the elderly....the AD Society.
The woman who called heard the story.
She said that the GP had no right to categorically state that a person does not have Alz. Disease (hereafter referred to as AD) after a few questions of a very basic nature in less than 10 minutes.
I can only guess what was in the GPs head at the time, for I know he would always mean well.
The woman said that a scan and other physical tests should be done and a far more in depth interview conducted by a specialist.
I was glad to get semi official advice.
I had spent the morning doing a little more research on Bill's medication. Methotrexate is powerful stuff and lowers the immune system and can cause liver damage, maybe kidney damage etc.
The list of side effects commonly given does not mention memory loss and the need for sleep.
But other people have been reporting this and some studies have been done in the USA.
Now, these studies might have been done by quack doctors with their own axe to grind. I do take things with a pinch of sale, I promise.
But I had a glimpse into their world and wanted to discuss it with the specialist this afternoon.
At first he was surprised......"I am a rheumatologist". AD is not his area of expertise.
But he did listen. He sort of dismissed the connection between methotrexate and memory loss. Nobody has studied that in the UK.
But he continued to listen and talked to Bill, asking him questions....which he couldn't answer.
He saw that there was a problem and then turned to me again and gave the same advice that the woman on the phone game me this morning.
The doctor then thought he would see how Bill got on without methotrexate for 2 weeks. Will the pain increase? Will the powers of memory and concentration improve?
And, bless him, he told me as we were leaving that he would report the conversation and the advice to the GP in the letter he has to send about the appointment.
So, now we wait.
Maybe we wait a month or two.
I shall monitor each day. .
Today I can record that Bill didn't remember going to a party in Kent 4 weeks ago.
Maybe the GP will ask to see Bill....maybe it will be up to me to arrange an appointment.
But this time I will hope that we are really on the path to a diagnosis.
The facts would be most helpful to me. I don't know yet if Bill wants the facts (if it is AD).
I know that there is very little to help AD sufferers.....except to ensure that the carers are in the best possible place.
And still I clutch at straws that there is another diagnosis.
I do not yet see things as bleak. We are both enjoying life as much as we are able. We have some lovely trips out, providing I organise them - and neither of us can cope well with anything too demanding. Bill doesn't remember every detail of the trips....but enough to enjoy fresh air, beauty and so on.He still makes jokes which make me laugh.....some of them!
We had a little trip after the appointment at the hospital.
Bill's sister has just returned from 6 weeks in their caravan in France.....but they did have to come back a little early.
She also has health problems. She spent Monday at a French hospital, having seen their equivalent of a GP early on Monday morning.
Her swollen legs were more than just oozing.
All part of life's rich pattern!
It was good to have a cup of tea with her and her husband. Husband has to be responsible for a lot of caring too.
And this evening I began to wonder if Bill felt some relief at the events of the afternoon.
He began looking at the few photographs he has taken on our trips.
He couldn't remember where anything was; but I was happy to see him doing something positive for a short while.
It has been a quiet day really, though we have been out for shopping, medical things and a little bit of socialising.
Today I have been given strong advice that we really must see the GP again about Bill's problems.
Firstly, this morning, I had a call from the National Society dedicated to supporting those with conditions of the elderly....the AD Society.
The woman who called heard the story.
She said that the GP had no right to categorically state that a person does not have Alz. Disease (hereafter referred to as AD) after a few questions of a very basic nature in less than 10 minutes.
I can only guess what was in the GPs head at the time, for I know he would always mean well.
The woman said that a scan and other physical tests should be done and a far more in depth interview conducted by a specialist.
I was glad to get semi official advice.
I had spent the morning doing a little more research on Bill's medication. Methotrexate is powerful stuff and lowers the immune system and can cause liver damage, maybe kidney damage etc.
The list of side effects commonly given does not mention memory loss and the need for sleep.
But other people have been reporting this and some studies have been done in the USA.
Now, these studies might have been done by quack doctors with their own axe to grind. I do take things with a pinch of sale, I promise.
But I had a glimpse into their world and wanted to discuss it with the specialist this afternoon.
At first he was surprised......"I am a rheumatologist". AD is not his area of expertise.
But he did listen. He sort of dismissed the connection between methotrexate and memory loss. Nobody has studied that in the UK.
But he continued to listen and talked to Bill, asking him questions....which he couldn't answer.
He saw that there was a problem and then turned to me again and gave the same advice that the woman on the phone game me this morning.
The doctor then thought he would see how Bill got on without methotrexate for 2 weeks. Will the pain increase? Will the powers of memory and concentration improve?
And, bless him, he told me as we were leaving that he would report the conversation and the advice to the GP in the letter he has to send about the appointment.
So, now we wait.
Maybe we wait a month or two.
I shall monitor each day. .
Today I can record that Bill didn't remember going to a party in Kent 4 weeks ago.
Maybe the GP will ask to see Bill....maybe it will be up to me to arrange an appointment.
But this time I will hope that we are really on the path to a diagnosis.
The facts would be most helpful to me. I don't know yet if Bill wants the facts (if it is AD).
I know that there is very little to help AD sufferers.....except to ensure that the carers are in the best possible place.
And still I clutch at straws that there is another diagnosis.
I do not yet see things as bleak. We are both enjoying life as much as we are able. We have some lovely trips out, providing I organise them - and neither of us can cope well with anything too demanding. Bill doesn't remember every detail of the trips....but enough to enjoy fresh air, beauty and so on.He still makes jokes which make me laugh.....some of them!
We had a little trip after the appointment at the hospital.
Bill's sister has just returned from 6 weeks in their caravan in France.....but they did have to come back a little early.
She also has health problems. She spent Monday at a French hospital, having seen their equivalent of a GP early on Monday morning.
Her swollen legs were more than just oozing.
All part of life's rich pattern!
It was good to have a cup of tea with her and her husband. Husband has to be responsible for a lot of caring too.
And this evening I began to wonder if Bill felt some relief at the events of the afternoon.
He began looking at the few photographs he has taken on our trips.
He couldn't remember where anything was; but I was happy to see him doing something positive for a short while.
