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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
I am interested in knowing of anyone who can tell me about someone who has LBD and Parkinsons. My husband has this. He cannot take any Parkinsons medication because it interferes with his LBD. The only thing he takes is Aricept and also Provigil during the day. The Provigil is to keep him awake otherwise he would sleep all the time. He was diagnosed in 2003. When we ask the doctors about the future, we don't really get
any clear information. What can we expect?

Can anyone enlighten me??? Thank you

Fran :?

Mon Jul 24, 2006 8:39 pm

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post What to Expect???
Hi Fran,
What to expect is difficult to answer. We're all in the same ocean but, different boats.

This dementia doesn't follow stages. Patients experience a wide variety of symptoms and display varying levels of severity. Therefore, rarely do 2 patients "look alike".

In looking at the professional articles.... to have a clear LBD diagnosis, one must present with dementia and parkinsons symptoms within about a year of each other. Was this your husband's case?

Are you aware that there is a support group just for spouses? It's been my rock since I found it a year ago.

Lastly, vague doctors????????? Don't put up with this. I'll ask for referrals for competent MDs in the Boulder/Denver area through the support groups and email you directly.

Self education is necessary as a LBD care giver - or any care giver for that matter :wink:
Sue & Harry in WV

Tue Jul 25, 2006 12:08 am
Dear Fran,
First off is it a true Parkinsons or Parkinsons Symthoms, My Husband was also first DX with a Parkinsons and then shortly down the road it was an LBD, It is hard disease and what makes it so hard is the fact everyone that gets it is so different, some display more dementia or more Parkinsons, this was the case for us, My Husband first displayed mild demetia, and when I say mild I mean he always knew who we were right up until the end, but he would forget small things and his thought process was the real problem, he knew how to do things but as the disease progressed he didn't know the order the things were done.
I can tell you with the Parkinsons many Dr's want to try all the meds for it but honestly less is better, so many meds go against LBD and make things worse, Before I was able to realize what many drugs were doing the damage was done, I just didn't know anyone that had dealt with the Disease, Our Dr told me I am sorry I don't have much advice except go to the internet and research it, but by then my Husband had been treated for so many things like Depression , ect that the drugs had done their harm already.
You ask what to expect? Well you are going to have to figure out if the drugs are helping the Parkinson like stiffness, tremors, what are they changing elsewhere for him, I know some people use them in small amount to just get by because they all have severe draw-backs.
I wish you well and As Sue said in Previous post there is a group called the caring spouses and there are some people dealing with LBD for yrs and are very caring and have answers for many questions.
I wish you well!

Tue Jul 25, 2006 9:01 am

Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Thank you for your replies. I have been to the other sites, but don't see
much on the "future". We discovered early on that Dick couldn't take
anything for his Parkinsons. His Parkinsons problem is extreme stiffness.
He is able to walk and is refusing using the wheelchair or a hospital bed.

For his LBD he only uses Aricept and Provigil. You are correct that it is
an individual progression.

What a horrible disease

Fran :cry:

Tue Jul 25, 2006 1:41 pm
Dear Fran,
How correct you are, it is a horrible disease, My Husband had it for approx 9 yrs maybe more as I said the Dementia came first the Physical came yrs later about 3 yrs before he passed and at first it was a slow progression and the last yr it moved at the rate of a out of control train, the hardest for me was the constant changes and towards the latter months those changes became greater, My husband had the rigity and the blank facial expression, the no blink to his eyes and only slight tremors that never got worse, about 1 yr before his death was the swallowing issues, I hope this has answered some of your question and as you already know everyone is different!

Tue Jul 25, 2006 3:32 pm

Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
I guess we are lucky. We went to the Mayo Clinic and they told us it would take Dick 6 - 9 years before he died. Our local doctor said 10.
No one seems to know where it leads to. Dick has O.T. and speech
help right now. All of it helps just a little bit. We are looking into getting
a hospital bed so that will help him sit up and I can get him out of bed.
His doctor wants him to go into a wheelchair but he is still fighting that.

Dick has the blank stare, unblinking eyes and rigidity. So far he has no
tremors. We do belong to a Parkinsons Support Group. I tried to start a
LBD Support Group, but there were no takers.

We'll see what happens. He was diagnosed in 2003.


Tue Jul 25, 2006 8:56 pm
Hi Fran,
I think a Hospital bed is great idea, probably will need to think about a lift chair at some point also, but the Mayo is telling you a lot of yrs and all's I can say is make the best of them , my Husband was sick for long time also but for yrs we managed very well!
The issue of a wheelchair was a sore subject in our house also, but because Jim had such walking problems I just told him we would get it "Just in Case" and one day we used it and he was able to do things with me and after that is was a way of life for us! :)

Tue Jul 25, 2006 10:33 pm

Joined: Fri Aug 11, 2006 5:46 am
Posts: 4
Location: England
Hallo. My husband has been diagnosed with LBD. At first it was Alzheimer's. It was changed when a new drug was thought to make him more agitated. He is stabilised on Exelon and Quietipine{ these are probably the English names} He did have Aricept at first. His behavior is becoming markedly difficult to deal with. He frightened a young boy assistant in a shop yesterday by loudly shouting for me. He told a man to stop talking on his phone in a cafe. I still take him around with me.

With all this misery I still find some events amusing.

His moods are frequent but pass quickly. He becomes very self pitying.
No one can tell me how yhis will proceed. He started to lose his memory 14 years ago. Now he has neither memory past or present. He usually does not know who I am. I am a familiar face. Yet he is physically fit.

We are all in limbo with uncertainty. Also when one has passed 70 years it takes more effort to do anything.


Fri Aug 18, 2006 8:19 am
Hi Maryjo,
I am glad you came here to the LBD Forums, You are right no one can really tell you how this disease is going to progress, everyone who has it differs to some degree, sounds to me your husband is displaying more the mental than the physical, both are hard but I would like see you talk with his DR again and explain the aggression he displays and I am sure they can put him on something to ease that for you! My Husband used to be on Exelon I think it was 9 mg daily, I am not sure it helped him and like your husband he was misdiagnosed in the beginning also, many are!
Come back often we are all here to help with questions or concerns! :)

Sat Aug 19, 2006 2:57 pm

Joined: Wed Dec 06, 2006 3:29 pm
Posts: 2
Post Criteria for Nursing Home
I would suggest getting a Court Order for a Guardian so that sister is out of the picture, since she doesn't want to spend a penny on your mother's care & her household. Get all your ducks in a row in terms of documentation of every detail of your sister's behavior - neglect of mother.

Secondly, I would go to a Medicaid Attorney to set up a Medicaid Trust & place mother in a nursing home under Medicaid auspices. Though nursing homes leave much to be desired, it seems that would be the lesser of the two options you have at the moment.

Next, I would blow off the sister who is in your life merely to create obstacles to your well-meaning intentions. Let the rich lady spend her money on her life; karma will eventually handle her in a fair & blessed way.

I wish you well & will include you in my prayers.

Let's keep each other in prayer.

Thu Jan 11, 2007 5:10 pm

Joined: Wed Dec 06, 2006 3:29 pm
Posts: 2
Post Parkinsons & LBD INfo
Dear Fran,
My husband also has Parkinson's & Lewy Body (my diagnosis, since Mayo Clinic calls him Alzheimers). They seem to go together.

My husband is bed-bound, stares, no facial affect, no blinking, no responses whatsoever. It is like caregiving a robot withou any feedback. As Sylia Browne said on Montel's TV show, "They aren't in there. They are on the next plane."

No one knows how long their life will last. They can die of stroke, heart attack, pulmonary embolism, and so many other things. I just pray that each of us has the strength to continue without killing ourselves. Our primary doctor told me, "Caregiving your husband will kill you." He said it twice before I left his office. I cancel that programming; however, one must primarily take care of oneself - or one cannot take care of the care recipient.

Go to to search for information on Lewy Body, Parkinsons, Alzheimers, dementia in general. Much info to be gained. I wish you well.


Let's keep each other in prayer.

Thu Jan 11, 2007 5:20 pm

Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
Dear Friends, My mom has both LBD and PD. Yes, anyone can get any variation of any or all of the dementias (we had a patient in the hospital where I work with both LBD and Alzheimer's). It is an horrific combination of diseases - and regardless of our efforts, there is no cure. We are careful with the meds we give her, but invariably mistakes are made. My best advice: get the best docs you can find who understand both PD and LBD - not just "dementia." LBD really is different from Alzheimer's. The symptoms are different, the progression is different, and treatments are very different. So we want MDs who understand that. And be specific in your Internet searches. What works for AD won't help us when it comes to meds. Visit the internationally-recognized experts at National Parkinsons Foundation website. Superb info and an "Ask the Doctor" forum where 3 top MDs answer questions within 48 hours. They also understgand the dementia (LBD and ) that often goes with PD. Also, our LBDA site for its clinical article by Dr. Boeve on appropriate meds. And the caregivers forum at - a broad range of folks going through this with their loved ones. Excellent advice and strong support at all sites. This is very hard journey to make with our LOs, and I keep all of you in my prayers.

Peace, Lin

Fri Jan 12, 2007 11:43 pm
Dear Lin,
Excellent advice! I would also like to mention the :D

Sat Jan 13, 2007 12:10 am
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