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 Carbodopa/levadopa for Parkinsonian symptoms 
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Joined: Mon Dec 20, 2010 11:35 am
Posts: 18
Location: Israel
Post Carbodopa/levadopa for Parkinsonian symptoms
My mother is 82 years old and has been diagnosed with LBD for abot three years. As time progresses she is getting more and more pronounced rigidity and walking difficulties. At the suggestion of our geriatrist we started treating with Dopicar which is a levadopa/carbidopa drug at low dosage. With the passing of time she is also deteriorating significantly cognitively. A year ago she scored 5 on mini-mental, now she would score 0 as she does not respond though she understands instructions. She also has constant halucinations and is all the time trying to touch things that aren't there. A few months ago we increased her Dopicar though still low and now we are increasing yet again. The results while noticable are less spectacular. My feeling has been that her walking and eating are more important for her well being than what is left of her cognisence. This is also allowing us to keep her at home. However I still wonder if there is an alternative medication to what we are goving her that may be better for a LBD patient?

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Starman*
Father of five and manager of my mum's life


Mon Sep 09, 2013 12:01 pm
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
It's always a balancing act with PD meds. My husband has been on Sinemet [or its equivalent] since early in 2005 and is now on a high dose 5xday. Yes, it does increase his hallucinations [for which he takes Seroquel] but he would be unable to swallow without it. He also has been on the Exelon patch since 2007 and it also has an antagonistic effect on the PD meds but most experts [and neurologists] advise continuing it even when it appears not to be working. It's a muddle, for sure, but one thing seems clear from the experience of many Lewys is that drastic changes are always a bad idea.

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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.


Mon Sep 09, 2013 3:28 pm
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Joined: Mon Dec 20, 2010 11:35 am
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Location: Israel
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Thanks mockturtle. My mum used to be on Exelon but the health fund stopped it at the beginning of the year after her last mini-mental as it is indicated only for lesser dementia symptoms. The last time we saw the neurologist was about a year ago and he didn't like the Dopicar/Sinemet at all and cut it and prescribed Seroquel for her hallucinations and fidgeting which just made her worse. When her walking got worse we then went back to the geriatrist who is gradually increasing the dose. As I said, my feeling is that she doesn't have much to lose congitive-wise and the most important thing is to keep her on her feet and eating. I just wondered if there is an alternative medication used with LBD which might get her back a bit into this world.

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Starman*
Father of five and manager of my mum's life


Tue Sep 10, 2013 12:58 am
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Joined: Mon Sep 09, 2013 9:16 pm
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Location: Texas, USA
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
My Dad is 80 years old and was diagnosed initially with Alzheimer's in January 2010, almost 4 years ago. Though his neurologist hasn't diagnosed Lewy Body Disease it is fairly obvious that this is what he actually has and we will be discussing that with him at Dad's next appointment. Although, based on the meds he's been prescribing over the last few years, the neurologist may indeed be aware of this already.

Dad is currently taking Seroquel (50mg morning and evening), levadopa/carbidopa (three times a day) and the Exelon patch. The Seroquel was prescribed for the hallucinations, which he still has during the day, some times worse than others. We tried increasing the night time dose to 2 tablets, but that just made everything worse. He takes the levadopa/carbidopa for his Parkinsonism -- very rigid arms and legs, shuffling gait, etc. I've read that Seroquel can sometimes have these side effects, so I'm not certain the levadopa/carbidopa is actually doing anything. As far as the Exelon patch is concerned, Dad slowly made his way up to the current high dose available, 13.3 mg. We've never really seen any impact from Exelon, but then again he might be in even more terrible shape without it. One just never knows as far as meds are concerned.

Dad has had a lot of reactions to various meds -- he couldn't tolerate Aricept, Namenda or Stalevo. Though he seems to be rapidy declining, at least there don't seem to be any really terrible side effects from those drugs he's on. But then again, who knows? I often wonder if everything that has been happening to him as he slides downhill is actually side effects of the meds and that he'd be normal if we discontinued all of them! I know this is a ridiculous way to think. In other diseases there is always room for hope. Not for this one.

Most of the meds prescribed are supposed to help keep the patient in the middle stages of the disease for as long as possible so that the later and end stages go more quickly. If this is the result of taking the meds, I guess that's what we'll take. I'd rather have my Dad not linger in the final stages.


Sun Sep 15, 2013 4:48 pm
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Joined: Mon Dec 20, 2010 11:35 am
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Location: Israel
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
It is a balancing act between the medications. Sinemet improves the Parkinsonism but causes halucinations and the Seroquel is supposed to push back in the other direction. As I said, my mum got a bad reaction just from a low dose of Seroquel. Also reading the online literature at the time I saw that it's usefulness is thought dubious (unless of course it does help you) so I just stopped it.

Right now she seems to be taking a downturn. I also wonder if it is made worse by the change in meds. Even though they are supposed to help. She is totally uncommunicative and sits hunched over and still rigid despite the higher dose. She gets shakes and her walking is still bad. At least she's still swallowing. I need to call the doctor again today and see what he says.

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Starman*
Father of five and manager of my mum's life


Mon Sep 16, 2013 12:53 am
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
My dad was diagnosed a little over a year ago. He is 82 and is on sinemet 4 times a day at a low dosage. I recently requested that he be taken off the sinemet because he became so somnolent(excessively sleepy) and non-verbal(only grunts in response) after a few months on the sinemet. The only way for me to be sure it is not the medication is to have a trial without it. He has not yet tapered completely off of it be already seems a little more aware(less time with eyes closed. I know even when he was soooo sleepy he was hearing and understanding us because he would smile and laugh at things that were said. He now is slowly beginning to speak more. Unfortunately, he is also starting to cough more and almost choke(on just his own saliva). It seems like we may have to choose the lesser of evils. Our neurologist said that LB patients have adverse reactions to seroquel. He said that it makes hallucinations worse so we have dad on another med for mood stabilization. It is very difficult to make sure that what we are doing is what is best for our loved ones. Is there an expected progression for LBD patients?

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MariaP
loving dad with lewey body dementia and mom with vascular dementia


Mon Oct 07, 2013 1:28 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Seroquel has worked well for some of our LOs with LBD, so I wouldn't automatically rule it out without trying it. Start with a small dosage and see what happens.

If you read a lot of the postings on this forum as well as the books that are out there, you'll see somewhat of a progression, althought this disease if very roller-coaster- like and symptoms are not the same for everyone in an easy to observe linear pattern. Keep reading! There's a lot here and out in the marketplace now. You can search on the forum for topics or key words of most interest right now.

Best, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Oct 07, 2013 10:01 am
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Joined: Tue Apr 29, 2014 4:33 pm
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
My LO is 85, diagnosed six years ago with what they thought was Parkinson's but since diagnosed with LBD with Parkinsonism's. The 1st doctor game him Sinamet 75/100. Terrible hallucinations. The doctor who diagnosed the LBD prescribed 25/100. Now he is trying to up the number of pills a day. LO is very reactive to any change. It took 2 weeks to get him up to 2 in the AM. I began two nights ago adding another 1/2 pill and we haven't slept or rested well. So off it comes tonight so we can both sleep. He walks but has to watch balance. If he wants me to hold him for balance, he will reach for me. Otherwise, hands off as it interrupts his balance.He takes one Seroquel at night with GREAT results. Every now and then he will have what I call a "walk around" but does get back in bed and then sleeps well.
He also has Gap Gras Syndrome which has not been diagnosed by the doctor. I have not been me for quite a while. He thinks there is a clan of people who all look alike and do good work! Last night he looked at me and said he loved all of us! He doesn't remember the names of our children or grandchildren; I think they are someone familiar to him, though.
He takes his own shower (thanks to a redo by ReBath), dresses himself with a little help, eats OK but I try to have foods that are easy for him to handle with the fork, usually asks for help going to the bathroom - sometimes to just know where it is. I will hear him call and he will be standing in the hallway with his pants partially down - no matter how many times I tell him to go all the way into the bathroom, stand on the little rug, turn and face the wall and THEN pull his pants down. We have a handicap stool but still have bars around to help him down and up. We do have a walker which we got when he fell and broke 3 ribs and spent 2 days in the hospital but he doesn't want to use it. He manages the stairs to the basement. So I am content with his and my quality of lite. I do need to help him onto and off the commode at night. As long as I can care for him at home, I intend on keeping him at home as long as I can. I am almost 76, in good health and have the support of children plus Comfort Keepers one afternoon a week. And now I have the support of friends from LBDA.


Tue Jun 03, 2014 10:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Welcome, janpot. It sounds like you are managing well right now, but I am wondering about one thing. You say he has balance issues and also that he is ok going down the basement stairs. Unless you have a very cushy basement floor, I'd be concerned about his falling down the stairs and hitting a hard surface.
How nice for you that he sounds happy and appreciative! Let's hope that remains because it's hard enough to be a caregiver, and many of us have or had LOs who became very agitated and angry as this disease progressed. Have a peaceful day, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jun 03, 2014 11:13 am
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Joined: Thu May 15, 2014 10:41 pm
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Location: Phoenix, AZ
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Welcome Janpot! I am glad you've found the forum. It sounds like you and your LO have been successfully problem-solving LBD. Feel free to bring any questions here, and I'm sure you will have wisdom to offer others as well!

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Wed Jun 04, 2014 9:41 am
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Joined: Tue Apr 29, 2014 4:33 pm
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
LTCVT wrote:
Welcome, janpot. It sounds like you are managing well right now, but I am wondering about one thing. You say he has balance issues and also that he is ok going down the basement stairs. Unless you have a very cushy basement floor, I'd be concerned about his falling down the stairs and hitting a hard surface.
How nice for you that he sounds happy and appreciative! Let's hope that remains because it's hard enough to be a caregiver, and many of us have or had LOs who became very agitated and angry as this disease progressed. Have a peaceful day, Lynn


No, there is no cushy floor but he is so used to them. We have lived here 46 years and the garage is in the lower level of our walkout. We have a sturdy rail which he does use. He is careful and does not want to carry anything in his hands up or down. The physical therapist has said this is a good exercise for strength and balance and so far, so good. We can't control everything; God is in charge in the end.


Wed Jun 04, 2014 9:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Glad he he still able to navigate the stairs, and the PT makes a good point about it being good exercise. What you should watch out for, however, is "stuck feet". At some point most (maybe all) of our LOs' feet stop and the top half of them keeps going, which means they are falling on their faces. Falling on the floor is bad enough, a header down the stairs would be even worse. Just a something you should keep in mind as things progress, and you never know when these symptoms will hit. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jun 04, 2014 1:00 pm
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Joined: Tue Apr 29, 2014 4:33 pm
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Yesterday I took him to the ER for possible bowel impaction and he decided not to walk down the stairs but go out the front door with only 3 steps. I drove the car around to pick him up. Yes, I watch his feet and know what you are talking about.


Thu Jun 05, 2014 9:43 am
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Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Glad all went well, janpot.

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jun 06, 2014 11:51 am
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Joined: Sun Mar 30, 2014 5:11 pm
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Location: Hawaii
Post Re: Carbodopa/levadopa for Parkinsonian symptoms
Allow me to join the others in welcoming you to the forum, Janpot! You do sound like you've got a great handle on so many of the issues that come up with LBD . How wonderful that your husband is still able to do many things for himself ,and that you have a lot of help available.

However, I must also share my concern about the basemnt stairs. As you've already seen with his previous fall, falls can happen so fast that most times it would be hard if not impossible to catch him or help break his fall.

True, exercise is important, but so is safety! Perhaps he could go to the garage from the front door, and, if you think you or someone else could "catch" him, go back inside from the garage and up the stairs. But, only if you think you could support him, if he tripped, lost his balance or have his feet "freeze" up. Food for thought! This will be one of many adjustments/ modifications to be made in the future. Keep us posted. AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Fri Jun 06, 2014 3:38 pm
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