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 IMPORTANT ... Please read 
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
I think as each of has the balancing meds game we learn from each other. My biggest lesson re meds has been there is no normal dose or reaction to any med. I'm glad when meds are listed, discussed etc. It gives me ideas to take to the doctors or to compare. It's also very helpful when alternative meds or treatments are discussed. For example Mother was recently tested for vitamin D3 levels- very low. So we are taking vitamin D- would love to know how others are doing.
Much like any group we discuss, argue, compare, share a few laughs etc
my $.01 worth (inflation)


Sun Mar 29, 2009 11:11 pm

Joined: Sun Mar 01, 2009 6:48 pm
Posts: 11
Post Important please read
I'm not sure I am replying correctly, I have problems understanding how the site works. I also want to say how much reading the posts on this site are helping me to cope. I am in Ireland, and most of you seem to be in the US, but LBD/PD is the same no matter what country. My husband Ray has an excellent neurologist, trained in the US, he has always read my husband's situation right, he is more than a doctor, he sees the whole person and not just LBD. My husband is about 60% into LBD, PD dx 11 years ago, and LBD last November, but it was obvious for some time that it was not just PD. He was in hospital for 2 months earlier in the year while doctor got the correct balance of meds and also checked him throughly for any infections that might be lurking. It was a terrible time until the meds were got right. I have learnt so much and like all of you I am amazed at how little GP's and the medical profession know about LBD.
I have a good regime in place for my husband, carers most nights, and the other nights are covered by myself and my two sons. I work, and that keeps me sane, I can work from home somedays. I particularly identify with what one person says, the feeling that I have lost my life, and will never get it back. I feel so lonely sometimes and scared also, particularly when I am alone with Ray at night. Don't get me wrong, he is a very gentle person and undemanding, except when the frustration of the disease takes over, and he always apologises afterwards. It is heartbreaking to watch. Nights can be very bad, he takes him several hours to settle, and he is incontinent at night also. His prostate is slightly enlarged, but they don't want to give any meds for it, as they have an adverse effect on the LBD. Sorry for rambling on, but I have no one to talk to tonight and I am a talker. It is great to know there are people out there who understand what this like. Thank you for being there.


Sat May 23, 2009 6:34 pm

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.

Glad you are posting and feel free to helps. It can be lonesome at times...but on this site there are always friends available to discuss your feelings with. If I am not mistaken it seems to me there is someone else on this site who is from Ireland. I remember it as my neighbor is going to Ireland in September on a tour.

Dianne C.

Sat May 23, 2009 11:55 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Enlarged prostate
he is incontinent at night also. His prostate is slightly enlarged, but they don't want to give any meds for it, as they have an adverse effect on the LBD.

Dear Polly, this statement has bothered me since I read it. I cannot let it go unchallaanged. The meds for prostate may be like many others, depending on the LBD patient. I'm glad our urologist did not have that information over two years ago when he gave Mr B. a prescription for AVODART and FLOMAX after cleaning [stuff] out his bladder which was causing repeated UTIs. If anyone tried to take these meds away from us, they would have to catch us first! Mr B. and I seem to be riding this LBD Express at about the same pace as others... some bad days and some not so bad... so far he can go to the bath room for himself at night if he is not in the middle of bad times. Last year we had some terrible times but it has leveled off while still using the two meds named above, which indicates to me that they are not harmful to him.

I don't want to hurt Ray, but I also don't want him to go with what may be misinformation.

Just put me down as a butt-in-ski who thinks she is an expert know-it-all person.

This from a gggranddaughter of a lady from Dublin. My gggrandmother lived to be 105 years old. She came from Ireland as a child. She was 100 years older than I when she passed away. I remember her because I was five years old. We visited in her Pike County, Mississippi USA home quite often.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Sun May 24, 2009 3:27 pm

Joined: Fri Feb 06, 2009 9:25 pm
Posts: 69
Location: N Ala
pop takes prostrate meds. It really makes a difference in him getting up so many times at night.
The VA has him on Proscar. He would be up 15 times a night without it. Most nights he sleeps all night with the med.

And I may not post very much but I do read the board several times a day.
Thank God for everybody here

Mon May 25, 2009 9:33 am

Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut

Although I have been "lurking" for quite some time, this is my first post. Until now I have had nothing, really, to add, but have benefited from the many posters who have been generous enough to share. My husband was diagnosed with PD in 2006, although he never developed a tremor, and has just a slight one now. However, his memory and cognitive functions seemed to be suffering,the reason for seeking medical help, and LBD was added to the diagnosis within a short period. Since we both have been retired for some time, and I was a teacher, dealing with his illness was very workable until the inevitable worsening of his condition resulted. He has been through a catalog of medications, and proves to be highly sensitive to them. Selegilene, which he took for many months suddenly caused a deluge of hallucinations, enjoyed immensely by my husband, I may add. Selegilene was dropped and so were the hallucinations, but many other medications, so helpful to many, just made his condition worse, including seroquel and trazadine. These two drugs made him sleepless for the whole night, as well as highly agitated...Anyway; the real reason I am posting now is to list the medications he is now taking. They are working well for the moment.. He is taking namenda:10 mg, twice a day; Exelon patch:9.5 mg once a day; sertraline::150mg at dinnertime, and the real reason for the post, since I have never seen anyone mention this drug: GABAPENTIN. He takes 200mg at night, before sleep.Apparently this drug is mainly used for epilepsy, which my husband does not have, but the side effects are just right, in that they have a calming effect, and he is now sleeping at night, except for bathroom calls (another subject). Also; he seems to have regained some of the cognitive functions he had following the conversation, and even participating on a limited basis. He smiles frequently and has happy days, as a course of events.I know that every person has his own individual profile, but I would like to suggest inquiring into GABAPENTIN if other drugs are failing. Sorry for the length and ramble....trying to get it all out. It feels good to be joining you.

Thu Jul 01, 2010 4:54 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Welcome! Interesting that your husband enjoyed the hallucinations. Do you mean trazodone as one of the meds he can't handle? A fair number of people with MSA (multiple system atrophy) in our local support group take gabapentin for pain relief. And I do recall some people hear mentioning the drug as well. (You could do a search on the name of the medication.) You might start a new topic about this medication as perhaps people are more likely to pay attention to it.

Thu Jul 01, 2010 5:30 pm

Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut
Yes....both trazadone and seroquel had a similar affect. He became agitated, and he did not sleep at all, except for, perhaps a five minute rest...then: up he bobbed, and walked (poorly and aimlessly) spending much time stooping to pick up miniscule "bugs" from the rug. It was a terrible period of time for both of us! Hopefully the addition of gabapentin, our "miracle drug" will keep working for him.

Thu Jul 01, 2010 5:40 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Marcia - thanks for mentioning this drug. Perhaps it would reduce my dad's continual anger and frustration. I will ask his neuro about it.
And, I'm glad you have decided to start posting here! Lynn

Thu Jul 01, 2010 6:17 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Marcia, Frank has been on gabapentin for 3 years. Original put on it for pain, but he was never in pain. I've heard it is also used for restless leg, which he didn't have either. He started with 400mg and is now on 200mg. I know it's suppose to help them sleep but I haven't seen any other benefits from it. Although I'm not sure what each med does do. Franks on nemenda 10mg morn and evening, aricept and zyprexa. I gave up trying to figure this disease out. AND of course welcome!!!

Take care, Gerry

Thu Jul 01, 2010 8:09 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
My husband can't take Seroquel [different reaction--became nearly paralyzed] but is currently taking Trazodone at night for sleep. The 50mg didn't do anything but his doctor had us increase it to 100mg and he is sleeping about an hour longer at night, which is great.

It's really remarkable how different medications affect our Lewy LOs quite differently! I wonder if it's a matter of which parts of the brain are affected by the Lewy bodies?

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Jul 01, 2010 8:15 pm

Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Gabapentin
My mom has been using Gabapentin for the past several months. She was experiencing a burning sensation in her legs and this has seemed to alleviate it completely. We started with 100 mg 2 times a day but gradually had to increase it to 300 mg 3 times a day and it does the trick.

Fri Jul 02, 2010 10:58 pm
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