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 So glad to find this site! 
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Joined: Fri Jun 23, 2006 4:38 pm
Posts: 1
Location: Denver, Colorado
Post So glad to find this site!
I am so glad to have found this site.

I had never heard of Lewy Bodies Disease until a few years ago when my Mom's neurologist mentioned it during a doctor visit. My Mom has PD and lives with my husband and I in Denver.

The dementia is getting worse all the time, as is the PD. It is hard to see her decline. It is frustrating but it is life.

Hope to see more users in the future as I notice this is a new site.

Thanks!

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Mary Ann


Fri Jun 23, 2006 4:48 pm
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
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Hi Mary Ann. My father was diagnosed three years ago and it's amazing how much more information is available now than was then. I'm thankful to LBDA and others for getting the word out about this disease.

My dad's PD is also getting worse but he goes to an excerise class (for seniors) two/three times a week and that seems to be helping with his gait and flexibility, not the tremors though. He isn't on meds yet for the PD -- aricept for the dementia (and it's helped a lot).

I'm hopeful that this area will become a place where we can learn from (and lean on) each other. Keep in touch.

Kathy


Fri Jun 23, 2006 10:43 pm
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Joined: Tue Jun 27, 2006 12:09 pm
Posts: 3
Location: upstate New York
Post glad to conenct with others
I am so happy to talk with others. My father was misdiagnosed with Parkinsons. His mental state has been the biggest problem with his illness. We asked for a sencond opinion and this doctor now says he has lewy body. So far he has changed some meds and we have seen a vast improvement in the last two weeks. I look forward to talking with others about this illness.


Tue Jun 27, 2006 12:12 pm
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Joined: Tue Jun 27, 2006 1:26 pm
Posts: 1
Location: Pittsburgh, Pennslyvania
Post I'm new to this.
Hi my Dad was just diagnosed about 6 months ago. He was misdiagnosed with Parkinsons for about 2 years. He has many types of hallucinations to go with his physical problems. It can be very scary when you get a phone call in the middle of day or night that there is someone in his room. My sisters and I love my Dad very much. It's just hard with having our children and families. When one of us leaves for any of period of time away the others panic. Any way I'm just glad to know that we are not the only ones. It's very frustrating though when each time we have to go to the hospital we are constantly dealing with a professional who has never heard of LBD. I'm on my way to see my Dad. He won't let anyone near him, he thinks everyone is out to get him. He's in an assisted living place. We are there all the time. At least it's close. :cry:


Tue Jun 27, 2006 1:36 pm
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
Post to LAGM
Hi LAGM. I'm so sorry to hear about your Dad. My parents live in Pgh too and I may be able to talk to you about some of the doctors they've seen. Please email me at kjmcg4@yahoo.com.


Wed Jun 28, 2006 4:29 pm
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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post 
Hi all, I'm not sure this will go though, but my husband has LBD with
Parkinsons. He was diagnosed in 2003 and just recently has started to
get worse. The only medication he takes is Aricept and takes Provigil
to keep him awake during the day.

He does exercise, but he is very stiff. No tremors from the Parkinson.

I would be more interested in what other people are using for medication
for this terrible disease.

Fran


Thu Jun 29, 2006 12:20 am
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Joined: Thu Jun 22, 2006 9:31 am
Posts: 12
Location: Sacramento CA
Post What other medications people use.
Fran asked what other meds people use. My Dad was on Exelon and Paxil. There is an excellent article on this site written by Dr. Brad Boeve that lists suggested medication for some of the symptoms of LBD. The medications are listed by generic name so you have to do a little translating if you are only familiar with the brand names (as I was). Go to RESOURCES, then click on ARTICLES, and it's the first one listed. It was written for medical professionals but it's a good read.

Jan (Sacramento)


Sat Jul 01, 2006 10:59 am
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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post 
I'm having trouble nagivating this forum. I've done a search on
Research and it responded with your note only.

Can you tell specifically where "research" is??? I've been on
the internet for years, but this forum is really a challenge to me.
Thanks for your time.

Fran S :?


Sat Jul 01, 2006 4:50 pm
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
Post Link to article
Hi Fran. Here's a link to the article.
http://www.lewybodydementia.org/docs/DL ... nuum04.pdf

We are working on improving the functionality of the forums. Please note: the search function above is only for the message board itself -- not the entire site. We plan to have a search function for the LBDA site itself in the months to come.


Sun Jul 02, 2006 8:59 am
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Joined: Sun Jul 16, 2006 2:11 am
Posts: 1
Location: Northern CA
Post 
I too am glad to find this site. My mom, now a fairly spry 83 has been difficult most of her life. In the last few months she has become impossible. She was just diagnosed with LBD this week. Her physical health is good but mentally she is in decline. She has hallucinations, severe paranoia, and gets very agitated. She repeats herself over and over and over. Her memory is like a sieve. She sleeps all the time and complains that someone has drugged her. Since she has no one in her life except me she thinks I am drugging her. She gets very nasty with me. Screaming and yelling and accusing me of terrible things and then of course does not remember. She has always been anything but cooperative. Now she thinks the Dr. is full of it and thinks she should sue him. He has prescribed Aricept but I am not hopeful that she will take it. She thinks her problems are caused by everyone doing terrible things to her. I feel like my own well being is in decline. I am beginning to dread being around her. Any suggestions on how to deal with the completely irrational behavior? Has anyone seen improvement with Aricept?


Sun Jul 16, 2006 2:47 am
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
Post 
Dear wmtpower,
I’m sorry for what you’re facing with your mother. Please know that you’re not alone. There are others here who know what you’re going through.

My dad (now 77) was diagnosed 3 ½ years ago and he too had the hallucinations and the cognitive decline you’re seeing. My mother was hesitant to have my father start on the aricpet but once he did, he had very (VERY) positive results. Before it, he had no concept of time (and became very combative about it), after aricept, he got that sense back. He also was able to remember how to dress and fix his own lunch. I couldn’t believe how much my dad was able to rebound on the aricept, so I definitely think it’s worth a try.

I read a lot on Aricpet and it seems that for the Alzheirmer’s patients, it helps about 10%. However, the more I read, it seems that Aricpet helps more of the LBD patients than the Alz. It’s not fore everyone though. There are other medications out there for LBD patients. Make sure you look in the medication strand on this forum. You may want to ask your mother’s doctor about them.

As for yourself, make sure you get some breaks and take care of yourself first. I don’t know if you’re in the position to get others to help you, but could you start looking into it? Do you have access to adult daycare for your mother? It’s a daunting thought, I know, but it may be worth inquiring.

Write back and let us know how you’re doing.


Sun Jul 16, 2006 11:29 pm
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Joined: Sun Jul 16, 2006 11:53 pm
Posts: 1
Post 
Mom lives with us and although not formally LBD via Dr. , we know it is...previously told Frontal Lobe but it's surely LBD. She sleeps a lot now and when her eyes are open she just stares. Doesn't speak more than a few words and holds spit in her mouth...are these typical things?


Mon Jul 17, 2006 12:05 am
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Joined: Thu Jul 20, 2006 9:13 pm
Posts: 2
Post 
Hi My name is Silvana my dad has Psp. He has a lot of of behavioral issues all that are described with LBD so today I explained this to the Dr and he ordered my dad to trial Aricept I hope it helps,

Silvana
Im also glad I found this webpage


Thu Jul 20, 2006 9:16 pm
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Joined: Thu Jul 20, 2006 9:04 pm
Posts: 1
Post 
hello, my name is Sharon and my dad had lbd, and was undiagnosed for over 10 years. he had unexplained falls and hallucinations (although dads hallucinations were scary to him ) he had numerous mri's, ct's, blood tests, even treated by a psychiatrist with no success. this all started about 1993. he continued to care for himself for almost 10 years, when he asked me and donnie to move to florida to take care of him. it was very hard decision but we did it. dad was unable to cook for himself, but was able to clean himself and go to the bathroom by himself, until may 2004 when he had a severe case of parkisnonisms that wouldnt stop and also his mental awareness fluctuated severely. he was hosp for 3 weeks 24 days in icu. he went in walking and talking came out using a walker and barely communicating. it wasnt until a weekend fill in dr came in and suggested lbd that brought it to our attention. i looked it up on line and immediatley realized that was what daddy had. we were glad to have a diagnosis, but sad to have read all the info. keep plugging, keep asking questions, keep researching, the more you can learn the mroe you can help your loved one, hugs, sharon [/list]

_________________
Sharon daughter of Leonard-hallucinations & unexplained falls-1993, diagnosed 5/04 after severe attack of parkinsonisms and fluctuating cognition, broke hip 5/05, aspiration pneumonia x 2, pulmonary embolyis x1, uti x2 passed away 9/25/05.


Thu Jul 20, 2006 11:35 pm
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Post 
I am glad you all found this forum, LBD is very tricky in the sense of proper DX and Drugs play a big factor in LBD, From my own experience
less is better, there are many drugs that do more harm than good. So become educated in the good and the bad of the drugs.
Irene


Fri Jul 21, 2006 5:39 pm
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