View unanswered posts | View active topics It is currently Tue Sep 01, 2015 2:13 am

Reply to topic  [ 3 posts ] 
 Father just been diagnosed. 
Author Message

Joined: Fri Dec 19, 2008 12:27 pm
Posts: 1
Location: UK
Post Father just been diagnosed.
This is my first visit and I have to say I have found it very helpful to read other peoples experiences. My father was diagnosed today but he has a lot of problems anyway and seems to be quite advanced because sypmtoms have been put down to other conditions. I will explain what has happened although to warn you it will be an essay.

Ten years ago my father had a brain tumour removed and then contracted septasemia and meningitus. As a result he has a rare condition called syringeamylea which causes too much fluid in his brain and spinal cord, for which he has a shunt which drains it off. Two years ago my stepmother decided she couldnt cope with my father as he has slowly lost the use of his arms and legs, is incontinent and has a catheter.

Dad moved in with me two years ago as I have been a carer for 15 years, i have four children between the ages of 7 and 15. Because of the stress from the divorce he has deteriated very quickly and the last year he started having episodes of seeing things that werent there, thinking he was in other places and having attacks of unconciousness. He has been in hospital numerous times and has always been put down to other things such as his medication. The last four months he has became permantly confused, seing things daily like birds at the end of his bed and saying things like he has three feet. He can be fine one day and the next he is unconcious. He is in hospital at the moment as he sleeps so much i cannot get food or drink into him, and it is increasingly difficult to get medication into him.

He is due to be sent home next week and am worried as to how we will cope with things and how this is going to affect him, the consultant has said they need to change his pills as he was put on anti psychotic medicaiton which I have now found out to be dangerous with this condition.

To be honest I am quites scared as to what will happen next as he has gone downhill so much, we nearly lost him 3 months ago to pnemonia.

Sorry for the essy but I felt I had to explain the situation and would appreciate some advice as how to move forward with this as putting him into a home is not an option for me at the moment.

Many thanks for listening to my rambling.


Fri Dec 19, 2008 5:34 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Hi Vicky,

Actually, your post wasn't very long at all! Welcome to this Forum, though I'm sorry you need to be here.

Please read Dr. Brad Boeve's "Continuum" paper on state-of-the-art treatment for LBD. And give it to the MD as well. Hopefully your father's condition can improve with the right medication. It is common for stressful situations to exacerbate symptoms. But things can improve. ... nuum04.pdf

You might also contact the Lewy Body Society in the UK. (

Good luck,

Fri Dec 19, 2008 7:46 pm

Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
Hi Vicky, glad to get to know you and praying that things are going alright for you. I also agree with Robin, that your post wasn't overly long at all and I too am sorry that we had to meet on here.

Sat Dec 20, 2008 1:52 am
Profile WWW
Display posts from previous:  Sort by  
Reply to topic   [ 3 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010