Hello,

My husband was diagnosed with LBD in Oct 08 at the age of 44, he became ill very quickly and needed full care within one week of becoming ill, he has a lot of the parkinson's symptoms and can only manage to shuffle in the house, he uses a wheelchair outside. We have had a quick decline in his health again, swallowing problems so lost 3st in weight and needing thickened drinks. But within the past week he cannot hold his head up, and having trouble feeding himself (his face is touching his dinner plate) and he seems unaware of this. His aricept don't seem to be having the same effect as when he first started talking them. Has anyone else had a very rapid decline in symptoms, its heart breaking to see and our your son of 12 is having a tough time dealing with this (hard enough for adults, let alone a child). I am worried because I fear that he is going down so quickly from his diagnosis

Hi Jmatfin - sorry you have had to join us, but you have come to a very supportive and informative place. If you read through many of the intros and the other topic areas you will see that a huge number of us experienced these terrible, sudden declines in our loved ones. Read as much as you can on this forum - it has so much valuable info. Your son must be very scared and sad, as I am sure you are too. Your husband is very young but there are others on the forum with LOs around the same age so you can find support from other people in very similar situations.
You may want to get on the chat too. It's a great place to vent, meet some really wonderful, supportive people as well as get advice.
Welcome. Lynn

jmatfin,

I'd have to look up your past posts to see what you/we said about the rapid decline at the beginning. Unless it was brought on by medication, this doesn't sound like typical LBD. Did anyone mention CJD as a possibility?

I don't know if your husband's latest symptoms -- while typical of LBD (and many other disorders) -- could be characterized as "quick" or not. If they came on suddenly, overnight, then typically there's another explanation for them such as infection or medication reaction.

Have you spoken with your husband's neurologist?

Can you get counseling for your son?

Best wishes,
Robin

Hi Robin,

My husband was tested for cjd when he first became ill, feb 08, he then was diagnosed with lbd in Oct 08, he was haveing hallucinations and showing signs of parkinsons and dementia, he has had his stalevo put up to 200mg 5 x a day now along with aricept, sinemet cr and trihexhphendle for the tremors, I have taken him to see our doctor and he cannot find any infection. I have an appointment to see his neurologist on Tuesday. I have asked for some help for our son.

Trihex is anticholinergic. I think that's an odd choice to give someone with dementia.

Have you checked the side effects from your husband's medications to see if they could be causing these symptoms? See a website such as rxlist.com or drugs.com.

I don't think all forms of CJD can be verified with a test when someone is alive.