Hi. My Mom was first diagnosed (at age 62) with Parkinson's (but only AFTER I suggested it to the Dr as a possibility) and then (at age 63) with Alzheimer's. Now (at age 65) with hallucinations a common occurance she has been re diagnosed as having Lewy Body Disease. I had never heard of this before and it seemed to be a 'new' idea for the neurologist as well. Kind of interesting since I read on the net that it isn't 'new' at all and it seems fairly obvious from her symptoms that she has this. It is so frustrating that Dr are so uninformed sometimes!
~Hannah

With Parkinsons meds can be their best friend or worst enemy.Once you find the right combination it makes all the difference.Mu husband has not has tremors for over a year.
I DO RECALL HIS TREMORS WOULD BECOME WORSE WHEN HE WOULD BECOME UPSET, MAINLY AT ME.The fact that he did alot of walking was good for his parkinsons.Excercise is so important for Parkinsons.Most who loose the battle do so by other problems attacking the body, which have been mentioned.
We have a neighbor who has been diagnoised with Parkinsons.He is in the early stages and remains active and able to work.I think about , down the road, when he will not be able to function as he now does and it saddens me.To know the future for 2 lovely people will be so drastically changed.

Mz Lisa, I think the best thing we can ask for is to have those who have been caregivers come to share and inform.I would suggest that the most usefull information comes from you and others with experience.There is not a person who comes to this forum who does not have something to offer to help another.
I have learned so much through others who have chosen to share.

Hannah your Mom is very fortunate to have you watching over her & her meds. I understand "for now it's ok" (meds) & as a CG we'll take whatever "calm" we can get! One of the hardest things for us CG & LO's is going thru that process to find what meds work.

Thanks MB, although I am a former CG now.

Each of us CG have challenges to face & although their diseases may have different names - lots of the issues are the same. I am thankful for this site & hope I can help someone w/my experiences.

The more I read about people afflicted with Lewy Body disease, the more grateful I am that my mom doesn't have that. For those of you caring for a loved one with this, my hat is off to you! The right balance of meds are so necessary to keep their symptoms subdued and their anxiety level at a minimum.

Just wanted to tell all of y'all how heroic I think y'all are in your efforts to deal with this cruel disease.

"You are fortunate that your Mom can take Sinamet as it helps w/the Parkinson symptoms. Many LBD patients can't because it increases their hallucinations, Mom was one of those."

Mz.Liza,
We have to be very careful with the Sinamet dose. It has to stay low or it increases my Mom's hallucinations too. Its a balence of Sinamet and Seroquel. I think more Sinamet would help her hands shake less, but the hallucinations and nightmares frighten her and stress her more than that would be worth. I know this delicate balence won't last forever and when the tip comes we will have to adjust something but for now it is ok. Not great, but ok.

Hannah

From what I've read it is not uncommon for LBD to progress quickly in some. My Mom was diagnosed w/ moderate AD in May, LBD in July and died in Nov. I feel that Mom gave up in May w/diagnosis and that contributed to the rapid decline too. Mom also did a very good job "hiding" symptoms early in the disease.

The medications your Mom is on are all typical for LBD. Unless they are not managing her symptoms? You are fortunate that your Mom can take Sinamet as it helps w/the Parkinson symptoms. Many LBD patients can't because it increases their hallucinations, Mom was one of those.

Hannah, I don't think there is any way to know how fast the disease will progress. My father contracted pneumonia and never bounced back. If he had not perhaps he would have had a longer life. Dad was on a medication which is no longer suggested for demenia. He was on resperdol (sp?) and in his case it was perfect. Many others have a bad experience with it. If the Docs think you are on the right track then that's the way to go.
When dad entered into the final stage he slept most of the time. He could no longer walk but he never seemed to be in any pain and we spent many many hours just holding hands and speaking softly. Some of the most precious times with my dad were spent during the three year illness.
He passed peacefully after refusing nourishment for several days.

quote:

Originally posted by Deborah1950:
His progression through the stages was very rapid...three years from diagnosis to final stage.

My Mom's progression seems to be rapid too. Is this common with Lewy Body? My Mom is 66 now and in the severe range of symptoms but the decline seems pretty constant. We notice things get worse all the time, at least monthly she seems to loose another skill. Mom is on Aricept, Namenda, Lexipro, Seriquel, and Sinamet. Are there any others I should investigate? Her neurologist seems to think this is a good regimine.

I was told by a Neurologist that my father probably had Diffuse Lewy Bodies. Dad had visual hallucinations, rapid mood changes, terrible sundowning and a lot of the Parkinson's type of body movements. He did the pill rolling, startle steps, falling. I tend to find several people in support rooms who are caring for someone with DLB disease. The medications (given after a psych eval. helped him so much.) He stopped having hallucinations and seemed to be at peace. His progression through the stages was very rapid...three years from diagnosis to final stage.

Parkinsons daughter, if you have the right neurologist they can prescribe meds that will quell the behavior you have stated.I went through some very difficult moments with my husband.It was to the point where I hated him for the way he treated me.No respect and all kinds of accusations.Once he was given the proper meds he is , as a whole, fine.Most of his behavior changes happen when he is being bathed.I have to make sure the room is warm and we are gentle with the bathing.There are meds out side those that most prescribe that will work.My husband is now on 100mgs of Seroquel in the morning.He takes requipt and cardopa? levadopa and sinement.He takes Celexa for his depression.Many times they want me to give him ativan when he becomes agitated but I inform them this behavior is short lived and there is a reason.He does have hallucinations and we justs go along with him.If he feels someone is or intends to do him harm I tell him I have fired them.I try to distract him or leave the room until he calms.He has an excellent Gheriatric doctor at the VA.Vey informed about medicines.He did say that down the road if his mental state got to the worst point ever he would consider Geodon.They refused to place him on Namenda as it could enhance his negative state of mind.His has psychotic tendencies so we try not to up set his thought process by arguing with him.I can almost tell you how he will react with different situations.In time you will become familiar with the areas that trigger agitation and anger.LD dementia is different then AD as the symptoms are not consistent.He recalls things from the past , but unable to grasp new information.I have learned to not force anything on him.If first I do not succeed I come back later and try.It makes things less sressful for all concerned.I attribute his fairly good state to the meds that have been considtent until there was an extreme change.Good doctoring from the VA .I also noticed his pain tolerance has been reduced greatly.We try to be gentle when bathing or changing him as he will become hostile as he views the pain as us wanted to harm him.This is where the phychosis comes in.They view things in a negative way with no foundation for such.

mae - any advice? my daddy is 62 and was diagnosed with LBD a year ago. his wife (not my mother) divorced him and he had to go live in an assisted living facility. he is becoming increasingly more agitated and confrontational. the assisted living facility is suggesting that we find somewhere else for him. the local nursing home is saying that he would have to live on the alzeihmers ward. however, he is still lucid most of the time and we think he would be miserable there. if my sister and i didn't have small children, we would try to take care of him ourselves. how are you managing to care for your husband? what are your future plans? do you know where young people with these disease go to live when they can not stay at home any longer?

Hannah, this is not a rare disease.It has not been used as a diagnosis until lately.I am the one who suggested to my husband GP that he had LBD.He told me I caught him with egg on his face as he had not heard of this since med school.I then mentioned it to the doctors at the VA.When they sat down with him ,saw all the physical symptoms they diagnoised him with Parkinsons with LBD , PARKINSONS DEMENTIA.I had also mentioned this to our socail worker and she began to research .Then she told me they had another patient who had been diagnoised with LBD.After hearing some on here speak of this I began to research.Too many time it is diagnoised as AD.The symptoms are almost the same with the dementia but not as consistant.Because I was so fortunate to have a good neurologist and good gheriatric doctor at the VA the meds were prescribed with very few changes and the affects were positive.The most problem came with UTI.He would become psychotic and out of control.If not given the proper antibiotic the long term affects can be serious.He does have agitation.Most of his actions are the result of his believing someone is always trying to harm him and he is protecting himself.Many with this have had active service time or experienced some trama as a child.He could never recall anything from his child hood and his service time was not in the fire lines.He did well with Aricpet for almost 3 years.Then I noticed he was getting serious diahrea, and this constant movement of his mouth.Taken off this has not happened since.He is on other meds that you have not mentioned.When I am able I will post what he is taken.He no longer shakes.When he was mobile , his shaking would occur when he became up set, mostly at me.His state of mind is that he is a reactor to what he believes are wrong doings to him.If he were not bed ridden I do not know if I could handle him as he still has such body strength.When upset he gets stronger.Most of the time he is not angry.We have noticed , when we take the texas catherator off this is when he become irrate.Why, because a few hair get caught and to him someone is out to do him bodily harm.But he views it in such away it would shock those who are not familiar with his emotions and what triggers them.I humor him no matter what he feels.If he feels he has been wronged I tell him I will make sure they never do it again.Sometimes he accepts that and other times he hollers" BULL Shit".I do believe the right meds have prevented his afflictions to progress at a rapid pace.The only time his meds were changed is when the symptoms had advanced .They have remained the same for 3 years.The only addition was the Celexa and an increase in the seroquel.I am fortunate as those who bath him know his kittle tidbits and are not intimidated.Now if he was able to get around that would probably be another story.I also know that GP IS NOT QUALIFIED TO DIAGNOIS THE PROBLEM OR PRESCRIBE THE CORRECT MEDS.It takes a neurologist who deals with this and other forms of dementia.With a man it is also important to have the prostrate checked.If one is enlarged it can cause uncontrollable urination or taking a long time to go.Even some of the meds prescribed for this problem can cause personality changes.We experienced such and went to another.

the symptoms respond better to meds and the symptoms are not as consistent.

From what I have seen and read, my Mom has classic Lewy Body symptoms; the dementia, the tremors, the hallucinations. Medication has helped somewhat, particularly the Sequel (sp) at night so she can sleep without nightmares/hallucinations. She looks much better since taking it - more rested and less thin and haggard. Also her symptoms are very up and down as you say...some days she is almost understandable and other days she is just absolutely out there someplace.
~Hannah

Hannah, My husband has Parkinsons with Lewey Body Dementia.He had eye hallucinations in the beginning.Because he was able to absorb information the Doctor worked with him to see the things that took form as people were not and his eyes were playing a game with him.This is quite different then the other hallucinations.I knew he had Lewey Bodies before the doctors.Then after seeing the doctors at the VA , they affirmed what I had always believed.There are meds that can help the symptoms.You have mentioned a few.My husband had a good neurologist who started with certain meds and as the symptoms progressed he changed to another .Physical therapy of some kind helps the physical.Many time those with Lewey Body dementia are told they have AD.There is a difference and the symptoms respond better to meds and the symptoms are not as consistent.A good neurologist will get you on meds and have follow ups.When they take a new meds it may take at least 6 weeks to see a change for good or bad.

You know Hannah...I dont usually make it a habit of siding on the docs side (somebody shoot me here!) but I think that it is a matter of them not being around the patient like we are 24/7 I mean they have to know about this disease but its not as common an occurance as say dem/alz, know what I mean. We are the ones that bring it to their attention most times not the other way around. We search for the answers that they dont have the time or luxury of doing because they see so many patients in one day...is this neglect on their part??? Kinda but considering all that they do in one day its just not possible sometimes.
Ill tell you going into the doctors office here seeing ALL the patient files compared to lets say when I was a kid my god! Thats alot now...I wonder how they keep everything straight...know what I mean?