Lewy bodies symptom

Robert

Registered User
Feb 25, 2005
44
My wife was diagnosed with Alzheimers around two and a half years ago, however I am begining to suspect it might actually be dementia with Lewy Bodies (DLB).
I have read a lot about DLB, but only once seen a reference to one of the symptoms described as 'finding it hard to get up from a seated position' which was in the Feb 05 Alzheimers Society 'Share' newsletter. In my wife's case, this is classic of her condition, in fact it has now developed into an inability to stand up. I would be pleased to hear from anyone with first hand knowledge of DLB regarding if this is indeed a characteristic symptom.

Thanks in anticipation.

Robert
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Robert, sorry, can't help there but someone else may be able to. You could try the Alzheimers telephone helpline, if the article was in a recent newsletter, they may be able to chase up information for you. We do have a fact sheet about it, if you go to the home page and click the info sign in the left hand corner you will see them. Just click on the ones that interest you. Love She. XX
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Robert,

Welcome to TP.

I also have no information to share on DLB unfortunately, but there are other Members who do. Hang on for a reply!

Best wishes,

Jude
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Dear Robert, like your on case my Lionel was diagnosed AD some three years ago. However his symptone are not classic AD(whatever they are) but more akin to LBD.

He is having another round of scns etc, as his consultant is baffled by how Lionels condition is progressing. Lionel has great difficulity in getting up or down from chair, and an inability to sit in the centre of a row in the theatre due to spacial awareness.

Don't think this helps you but I am sure someone on TP will be able to come to your assistance. They are a great bunch. Connie. Lionel is 63 now.
 

Geraldine

Registered User
Oct 17, 2003
143
Nottingham
Hi

My Mum had Lewy Body she sadly died 3 weeks ago. It was initially diagnosed as Parkinson's Disease with Dementia but research on my part 2 years ago led me to LBD before the Consultant got there. Alzheimer's Society Scotland has an excellent Fact sheet as do the Parkinson's Disease Society. More inforamtion is now available on the Web than was 2 years ago and if you do a simple Google Search you will find a wealth of info. One of the tell tales signs is that the condition can fluctuate from day to day and even hour to hour leading carers to believe that the patient is 'putting it on'. Over a matter on Months Mum lost the inability to walk unaided, get up or find a chair or the toilet it was as if she had forgotten what to do. I would say it was about 6 years from diagnosis to when she finally died at 81. You need to get a definate diagnosis for LBD as many if the usual drugs can excacerbate symptoms and in some cases can prove fatal. Unfortunately it is notoriosly difficult to treat because of this. Not good news I'm afraid, but the more you arm yourself with information the better prepared you are for the professionals!

regards

Geraldine
 

holly

Registered User
Mar 6, 2004
1
lewy bodies

Hello Robert

My father has very recently been diagnosed with Lewy Bodies.

He does not have a problem getting up from a chair, he is a very physically fit 79 year old.

His main problems are that he cannot find words and he is becoming more forgetful, can't always remember my name, and he suffers from really bad hallucinations. He is now on a drug to combat the hallucinations which is suitable for his disease and is doing a lot better now.

Is your wife on any neuroleptic drugs? These are not recommended for people with Lewy Bodies. This is how we came to the definate conclusion that Dad had DLB because of the huge deterioration in him when he was put on neuroleptic drugs

If you need any more info, I will be happy to help.
 

Robert

Registered User
Feb 25, 2005
44
Sheila said:
Dear Robert, sorry, can't help there but someone else may be able to. You could try the Alzheimers telephone helpline, if the article was in a recent newsletter, they may be able to chase up information for you. We do have a fact sheet about it, if you go to the home page and click the info sign in the left hand corner you will see them. Just click on the ones that interest you. Love She. XX
Dear Sheila,

Thanks for your response and suggestions, which I will be checking out. I have also had several TP replies which are encouraging and I will follow these up.

Robert.
 

Robert

Registered User
Feb 25, 2005
44
Jude said:
Dear Robert,

Welcome to TP.

I also have no information to share on DLB unfortunately, but there are other Members who do. Hang on for a reply!

Best wishes,

Jude
Dear Jude,

Thanks for your response. I have had several interesting TP replies so far.

Robert.
 

Robert

Registered User
Feb 25, 2005
44
Nada said:
I'm sure you've read this Robert, but for the benefit of other people using the forum, the Alzheimer's Society information sheet is at
http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_lewy.htm

Robert - have you found out any more?

Best wishes
Nada
Dear Nada,

Thanks for your response. Yes, the Alzheimers Sosiety is a mine of information and I have also searched the internet, plus I have received several replies from TP contributors, which I will follow up.

Robert.
 

Robert

Registered User
Feb 25, 2005
44
connie said:
Dear Robert, like your on case my Lionel was diagnosed AD some three years ago. However his symptone are not classic AD(whatever they are) but more akin to LBD.

He is having another round of scns etc, as his consultant is baffled by how Lionels condition is progressing. Lionel has great difficulity in getting up or down from chair, and an inability to sit in the centre of a row in the theatre due to spacial awareness.

Don't think this helps you but I am sure someone on TP will be able to come to your assistance. They are a great bunch. Connie. Lionel is 63 now.
Dear Connie,

Thank you for your reply and I am sorry to hear of your husband's situation. It does seem that diagnosis of the different types of dementia is difficult because some symptoms are common to more than one form of dementia.

As indicated in an Alzheimers Society fact sheet on 'Drugs used to relieve behavioural symptoms' major tranquillisers (neuroleptics) may be particularly dangerous for people with DLB. So that the correct diagnosis is extremely important I wish you both success with the diagnosis.

Thank you for your comment about Lionel's difficulty in standing up, it does reflect my wife's situation.

Robert



,
 

Robert

Registered User
Feb 25, 2005
44
holly said:
Hello Robert

My father has very recently been diagnosed with Lewy Bodies.

He does not have a problem getting up from a chair, he is a very physically fit 79 year old.

His main problems are that he cannot find words and he is becoming more forgetful, can't always remember my name, and he suffers from really bad hallucinations. He is now on a drug to combat the hallucinations which is suitable for his disease and is doing a lot better now.

Is your wife on any neuroleptic drugs? These are not recommended for people with Lewy Bodies. This is how we came to the definate conclusion that Dad had DLB because of the huge deterioration in him when he was put on neuroleptic drugs

If you need any more info, I will be happy to help.

Hello Holly,

Thank you for your reply. I am pleased for you and your father that he is better now that he is not on neuroleptics. Like your father, my wife also has hallucinations, but she is not on neuroleptics because I read the warnings in an Alzheiners Fact sheet on that subject, so was prepared when medication was discussed.

Robert.
 

Robert

Registered User
Feb 25, 2005
44
Geraldine said:
Hi

My Mum had Lewy Body she sadly died 3 weeks ago. It was initially diagnosed as Parkinson's Disease with Dementia but research on my part 2 years ago led me to LBD before the Consultant got there. Alzheimer's Society Scotland has an excellent Fact sheet as do the Parkinson's Disease Society. More inforamtion is now available on the Web than was 2 years ago and if you do a simple Google Search you will find a wealth of info. One of the tell tales signs is that the condition can fluctuate from day to day and even hour to hour leading carers to believe that the patient is 'putting it on'. Over a matter on Months Mum lost the inability to walk unaided, get up or find a chair or the toilet it was as if she had forgotten what to do. I would say it was about 6 years from diagnosis to when she finally died at 81. You need to get a definate diagnosis for LBD as many if the usual drugs can excacerbate symptoms and in some cases can prove fatal. Unfortunately it is notoriosly difficult to treat because of this. Not good news I'm afraid, but the more you arm yourself with information the better prepared you are for the professionals!

Regards

Geraldine {/QUOTE}



Hello Geraldine,

Thank you for your reply. I'm so sorry to hear the sad news about your Mum, both my own mother and mother-in-law died as a result of dementia, so I can imagine how you must be feeling.

Much of what you say is very familar to me, I have also researched the subject on the Alzheimers Society web site and the internet. From my findings I am pretty well convinced that my wife does have DLB and although I have discussed the subject with a 'professional', he was non commital Thank you for the observation reference your mothers inability to stand and walk, that mirrors my wife's situation. She also has hallucinations and sometimes parkinson like shaking of one hand. Having read much about the dangers associated with DLB and neuroleptics, I have avoided their use for my wife.

I liked your comment ref being ahead of the consultant, plus being ready for the professionals, again also a familar situation in my own experience.

Regards

Robert
 
Last edited:

Staff online

Forum statistics

Threads
113,294
Messages
1,659,061
Members
63,984
Latest member
Linda Best