Friday, February 14, 2014
Pick's Disease
Poor old Pick's Disease has slipped under my radar in the last 3 weeks.
It was this form of dementia that Jamie and I surmised might be what Bill has. It particularly affects the front temporal lobe of the brain and leads to behaviour problems and character changes.
And it was this form of dementia which the specialist doctor first said that Bill has.
But the doctor then almost dismissed it because it is a form of dementia for which there is no known medication.
Bill also has Alzheimer's Disease and there are medications that may help with AD on a short term basis.
My reading today tells me that the typical AD medication is not advised for anybody with Pick's - in fact it can make things worse.
I read this in a simple document produced by The Alzheimer's Society.
Today we were visited by the lovely Lucy - an AD nurse.
"Lucy in the Sky with Diamonds" Bill said.
And bother - I forgot to mention the Pick's Disease diagnosis.
I must email her about it. And email the Pick's Disease Association.
Apart from that she was great to talk to and helpful.
The worst thing she told me was in reference to driving. I should notify the DVLA of the diagnosis and fill in the appropriate forms. I have already filled in the forms - but done nothing about posting them off.
Lucy said that if one doesn't inform the DVLA about an AD diagnosis there could be a fine of £1,000.
Why on earth didn't the doctor tell me that? I asked about driving and she shunned any responsibility on the subject.
The forms have now been posted. Poor Bill - it may well signal the end.
I have asked to pay for a special driving test.
People with Pick's Disease have good spatial awareness.
There is so much to learn and it is only people like me, who follow things up, that ever get to learn much of this stuff.
Next Thursday we see the prescribing nurse.......presumably for more medication. I really need to discuss this with an expert.
The only medication that can be offered to Pick's Disease patients is an antidepressant/sedative type of thing.
That is what he needs - something to stop the constant compulsive behaviour.
Somebody on the AD forum page has talked about Bill's autistic tendencies and thinks that the compulsive behaviour may be connected with that. Autism experts call is "stimming".
She wondered if I could try a task and reward system.
If he does something useful then I would allow him a time of clapping and banging.
He couldn't do it.
I said he could clap and bang for 5 minutes but couldn't keep it going. Just wandered off.
Nothing much else today - enjoyed Winter Olympics. having been at our Olympics, I felt very envious of people there, experiencing a special time.
Enjoyed a GB gold medal of course. Shame the time for Shelley Rudman, one of my brother's ex pupils, has passed now. Glad to see her competing, but she couldn't replicate her medal winning performance of 2008.
It is windy out there - very windy; though I am sure that further west it is much more windy. Maybe not raining right now.
It will be another week without a trip to Ford.
Sunday should be better and we could go to car boot sales in Brighton.
Those who have spent time with Bill or read anything I have written will recognise Bill from these symptoms.
I am not sure if I have mentioned on the blog his tendency to "talk dirty".
It was this form of dementia that Jamie and I surmised might be what Bill has. It particularly affects the front temporal lobe of the brain and leads to behaviour problems and character changes.
And it was this form of dementia which the specialist doctor first said that Bill has.
But the doctor then almost dismissed it because it is a form of dementia for which there is no known medication.
Bill also has Alzheimer's Disease and there are medications that may help with AD on a short term basis.
My reading today tells me that the typical AD medication is not advised for anybody with Pick's - in fact it can make things worse.
I read this in a simple document produced by The Alzheimer's Society.
Today we were visited by the lovely Lucy - an AD nurse.
"Lucy in the Sky with Diamonds" Bill said.
And bother - I forgot to mention the Pick's Disease diagnosis.
I must email her about it. And email the Pick's Disease Association.
Apart from that she was great to talk to and helpful.
The worst thing she told me was in reference to driving. I should notify the DVLA of the diagnosis and fill in the appropriate forms. I have already filled in the forms - but done nothing about posting them off.
Lucy said that if one doesn't inform the DVLA about an AD diagnosis there could be a fine of £1,000.
Why on earth didn't the doctor tell me that? I asked about driving and she shunned any responsibility on the subject.
The forms have now been posted. Poor Bill - it may well signal the end.
I have asked to pay for a special driving test.
People with Pick's Disease have good spatial awareness.
There is so much to learn and it is only people like me, who follow things up, that ever get to learn much of this stuff.
Next Thursday we see the prescribing nurse.......presumably for more medication. I really need to discuss this with an expert.
The only medication that can be offered to Pick's Disease patients is an antidepressant/sedative type of thing.
That is what he needs - something to stop the constant compulsive behaviour.
Somebody on the AD forum page has talked about Bill's autistic tendencies and thinks that the compulsive behaviour may be connected with that. Autism experts call is "stimming".
She wondered if I could try a task and reward system.
If he does something useful then I would allow him a time of clapping and banging.
He couldn't do it.
I said he could clap and bang for 5 minutes but couldn't keep it going. Just wandered off.
Nothing much else today - enjoyed Winter Olympics. having been at our Olympics, I felt very envious of people there, experiencing a special time.
Enjoyed a GB gold medal of course. Shame the time for Shelley Rudman, one of my brother's ex pupils, has passed now. Glad to see her competing, but she couldn't replicate her medal winning performance of 2008.
It is windy out there - very windy; though I am sure that further west it is much more windy. Maybe not raining right now.
It will be another week without a trip to Ford.
Sunday should be better and we could go to car boot sales in Brighton.
Those who have spent time with Bill or read anything I have written will recognise Bill from these symptoms.
I am not sure if I have mentioned on the blog his tendency to "talk dirty".
Behavioral signs and symptoms of Pick’s disease
- Impulsivity and poor judgment
- Extreme restlessness (early stages)
- Overeating or drinking to excess (when this was not previously a problem)
- Lack of attention to personal hygiene
- Sexual exhibitionism or promiscuity
- Withdrawal or decreased interest in activities of daily living
- Decline in function at work and home
- Repetitive or obsessive behavior
Emotional signs and symptoms of Pick’s disease
- Abrupt mood changes
- Lack of warmth, concern, or empathy
- Apathy
- Rudeness, impatience, or aggression
- Easily distracted; poor attention span
- Unaware of the changes in behavior
