My husband is in his mid-80s and has PD. We live in the EU, where Madopar is available and comes as 200 mg levodopa, 50 mg benserazide. He's on Madopar and Exelon patches.

Recently his neurologist ordered a 70% dose increase of the Madopar, going from 350 mg of levodopa per day up to 600 mg per day over 2 months' time, hoping that this would help my husband walk faster and loosen up his stiff right arm. He also said that he thought it would help my husband with his balance (???). My husband is coping very poorly with the dose increases; basically, he has become very confused, with greatly increased forgetfulness. He has vivid dreams which he believes really happened. Physically, he is less functional than before; after each daytime drug dose he feels sleepy and dizzy and can do nothing for at least an hour. His balance is much poorer. He can no longer go for walks outside alone. He can no longer shower independently. We've had to give up social activities.

The doctor doesn't want to roll back the dose increases. He says, "It's never a good idea to reduce doses." He wants instead to give my husband an anti-psychotic medicine to try to reduce the vivid dreams. My husband and I have a policy of taking minimal medicine, the smallest dose that will help, and we don't want anti-psychotic drugs. We think the doctor should roll back the Madopar doses to what they were before the psychiatric symptoms worsened. My husband was at least functioning then.

As of this week, we have a home treadmill. The treadmill meets his needs better than walking outdoors because it has handles which can be grasped; also, I can stand by the treadmill and supervise to make sure he doesn't fall. Basically, I take all the same precautions that a physical therapist would, because I've attended all my husband's physio appointments with him and I've been trained in assisting with all of the exercises. In the past, when he has had weeks of physical therapy, it made a tremendous difference in his strength and mobility. Walking up to 30 minutes a day on the treadmill and cycling 20 minutes a day on the pedal exerciser may help my husband more than higher medicine doses would.

I'd appreciate the insight of members on this board. Am I looking at things incorrectly? Shouldn't anti-psychotics be reserved as a last resort, due to liver and/or kidney toxicity? And do levodopa drugs really help with balance? My understanding is that they don't, so please correct me if I'm wrong. Many, many thanks.

My initial thought is that you know your husband best and if this neuro doesn't want to roll back the dose or gets locked into this dogma that rolling back doses is always bad, I would see another neuro. We all try things and if they do not work, we move on to other things or back to what was working.
Best,
Eric

eds195 has it right. I frequently experiment with my doses. My neuro does his best, but he doesn't live in this body. Due to increasing off times and nausea, he upped my Sinemet to 5.5 tabs per day and had me taking 8 mg of Requip XL with the morning Sinemet. It was better but not the best, so two weeks ago I started taking the Requip at night, eliminated the evening .5 tab of Sinemet and Voila! I feel great. Since I also have REM dream disorder, I take the Requip about 9 p.m and .5mg of Clonazapam an hour or so later. Nausea is nearly always gone. Need for naps is greatly reduced (maybe 15-30 min/day). Overall energy and mental acuity greatly improved.

I think it's important when making changes to change just one thing at a time and let that settle out for a week or two before adding another change. The best thing you're doing is exercise.

what times are his doses and how many milligrams/dose? that info would be helpful. if he's having undesirable side affects from the first dose of the day then reduce it imho, he's taking too much.

some neuros will increase doses until dyskinesias occur then back off. did he have any improvement on the 1st dose increase?

Thank you, soccertese, for your reply. Below is what the neurologist instructed us to do. The numbers are mg of levodopa from the Madopar and daily totals in parentheses. The increases were about 4 weeks apart.

Pre-increase dosing: 8AM 150, 1PM 100, 8PM 100 (350)
He was okay on these doses, not brilliant, but he could walk comfortably, albeit slowly. His mind was fairly clear and memory lapses not too frequent. He couldn't have told you all the names of his grandchildren even then, however.

Increase #1: 8AM 100, 12noon 100, 4PM 100, 10PM 100 (400)
This didn't increase the size of any one dose (actually the 8AM dose shrank), but it added one dose and also added 50 mg to the daily total. He had an improvement in his "wearing-off" symptom of flushing (redness in his face and hands mainly). Since the flushing bothers him quite a bit, maybe 4 doses a day is better for him than 3 doses a day in that regard. No other improvements. Slightly more memory loss.
The Madopar leaflet says, "In the presence of the peripheral decarboxylase inhibitor, benserazide, the elimination half-life of levodopa is approximately 1.5 hours. In elderly patients the elimination half-life is slightly (25%) longer." That's about 1.875 hours then, as my husband is 84. With dosing closer together and slightly slow elimination of levodopa, could it be that a significant amount of the drug is still circulating when the noon and 4PM doses are taken? Two things point to this possibility: (a) He does his best exercise right before receiving his noon dose. (b) Several times we were on the road when his noon dose was due, and he received it an hour late, that is, 5 hours after the previous dose; he seemed to act less foggy when this happened.

Increase #2: 8AM 200, 12noon 100, 4PM 100, 10PM 100 (500)
This is where we're at now, soccertese. It was after this increase that my husband suffered the severe problems I described in my original post. The next increase is due in a few days, as follows:

Increase #3: 8AM 200, 12noon 100, 4PM 200, 10PM 100 (600)

Many thanks for your thoughts.

I am not familiar with the names of the drugs you mentioned, but my guess would be that they are similar to stalevo, sinemet, or mirapex


I also think he is taking too much, and too much will make you worse..Another thought I have is just because a Dr, or a mechanic, etc, has schools he got degrees from, framed on his wall doesn't mean he is any good at what he does..The neuro that diagnosed me had a bedside manner like an alligator with an abscessed tooth..He couldnt figure out how to titrade me up on my medications..He gave me instructions to take 3 of these per day and set up a follow up appointment..These meds make you nauseated..He did the same thing the with the next 2 drugs that he gave me to try..When I tried that with Requip, I thought I was gonna die..His reply.."I don't know what to tell ya"..My reply was..I do..Good bye!!..Personally, I will dump any Dr who I think should have been a janitor, and I learned a lot about that on this forum board


Psych problems, psych medications..In my opinion based on my experiences, I can share this with you..Stress, anxiety, and depression to pd, is like swallowing a bottle of poison..I have a high stress and anxiety level, and when it hits, it will make my meds stop working in a minute..I take 10 mg of valuim per day, and it doesn't do anything..It's not enough, but I had DBS surgery 7 months ago and I can't change any of my meds until my Dr says I can


There is a psychological element involved with pd..I am sure of it..I think meds can intensify it, and I know DBS settings can cause problems with it as well..Here is something that blew my mind, and I am still having a hard time digesting it..I went to my MDS for a DBS programming appointment..He tinkered around with me for a while to try to get to know my system..While we were ready to wrap it up, my Dr wanted to try 3 more settings, so I said ok..He said ok, I am going to turn your batteries on..And when he did, I swore that I felt the electricity going through my body..He picked a setting and asked me how it felt, and I told him that I felt a weakness above and below my right knee..Then he said that he was going to go one step higher..I got wild dyskinesia that almost put me off the chair and on the floor..Then he said he was going to go one step higher..Both of my legs got so weak that I had trouble standing up, and couldn't move either one of my feet one inch..Then he said that he was going to shut the batteries off, and I felt relived, relaxed..And my Dr told me that he had to tell me something..So I asked him what the problem was?..He told me that during those last 3 settings, he never turned the batteries on..He just told me he did..So basically I reacted to nothing 3 times..He told me that he does that to all of his patients to figure out what we are thinking..So I said, what was I thinking?..And he said that I want all of the benefits of the DBS without turning the batteries on


Well guess what?..I told him that was exactly the way I felt..I was going through an extended honeymoon period, and he told me that I was going to crash and burn soon, and then he said we will start the programming when you do


Well my DBS has been on for one week, 6 weeks after the surgery, and 4 days later my morning meds started taking 3-5 hours to kick in, and the dyskinesia got worse..So I shut the thing off, and it has been off for 7 months, and the leads are treating my symptoms in the absence of stimulation..The dyskinesia is gone, and my balance is starting to improve over the past 4 days, and I am not falling down as much as I was


My Dr rates appointments on a scale of 1-100..1 being the best and 100 being the worst..Prior to DBS my number was 65..After DBS my number was 43 in December..At the end of March, it was 41..Its not much..It's only 2 points, but it is progress nonetheless..I am willing to bet it is lower right now


So my suggestion would be to find him a psychiatrist who is familiar with pd, because dealing with
psych meds is a very delicate and timely endeavor


Best of luck to you

Thank you, stevem53. I found your post extremely interesting (sorry you had to endure some substandard care). It's encouraging that your appointment scores are improving over time, even if the DBS system is turned off for now. A couple of things:

Yes, the Madopar which is my husband's mainstay treatment is a European equivalent to Sinemet, but it replaces carbidopa with benserazide, which has slightly less side effects. Madopar comes both as regular hard tablets which kick in slowly but have a good "on" time, and as water dispersible tablets which kick in rapidly but don't last quite as long. The morning dose is a combination of both, so that he has levodopa support quickly but doesn't run out of steam too soon. He'll continue on this combo for the morning dose, for so long as we can obtain the water dispersible tablets. They're not always available.

The Exelon patches are rivastigmine, an acetylcholinesterase inhibitor (intended to support the memory). Exelon at 4.6 mg a day does nothing for my husband as far as I can tell. It seems to do no harm, though. The neurologist wants him on it, thinking it MAY be neuroprotective and delay disease progression (no hard proof of that however).

Regarding PD and stress: I completely agree with what you're saying. My husband worked in a high-stress office job until he retired; I would bet that his adrenal glands became huge, having to constantly produce cortisol and adrenaline to deal with low level and high level stress at unpredictable times. I mentioned that he has flushing as a "wearing-off" symptom; maybe, when dopamine goes low, cortisol is produced to try to compensate. The flushing may be from high cortisol.

Since developing PD, my husband loses his memory completely when under stress. For example: He had an appointment at a new doctor's office, but he drove to the wrong clinic. He phoned the receptionist asking for directions to the correct clinic. Although he knows the layout of the town very, very well, he forgot everything he knew about it as the lady gave him directions and landmarks to look for. He was shaking his head and asking, "You're located past the town hall? But where is that?"

stevem53, we'll take your advice and see a psychiatrist, if any psychiatric meds really become necessary. Thank you for that tip. All the best to you too.

Thanks for your reply Bergamotte..Yes, my first neuro was an arrogant and insensitive man..A friend of mine recommended a nuero that his wife was seeing, and I have been with him since 2004..Good Dr..Good man

The DBS mystery has the DBS team that did my surgery at Beth Israel in Boston at a loss for why the leads implanted in my brain, are treating my symptoms with the stimulator batteries off..If it lasts, it will be a blessing..The MRI that they are going to do at the hospital tomorrow, might provide an answer..The care, the surgery and the communication at that hospital is the best I've ever had..Very accommodating, and when I call there and ask to speak to the Dr, he always returns your call at his first possible convenience

Bergamotte said: "he is inclined to listen to my husband's relatives and not to me"

I'm having trouble getting my head around this one! My wife accompanies me to my MDS neuro appointments, but I just can't imagine any of my relatives coming too. The neuro always asks my wife for her view on how I am.

I'll tell you about my experience, on the off chance that it might be of some interest to you, or to someone else.

My neuro thought my tremor could be improved by increasing my dosage of Madopar 125 from 3 tablets per day to 4.5 tablets per day. When I tried the new dosage I experienced dystonic dyskinesia in my right foot (it started about half an hour after I took the new dose, and lasted for about one hour). I reduced the dosage back to 3 tablets per day but the dyskinesia still occurred. I then changed to taking half a tablet 6 times a day, and the dyskinesia stopped occurring.

Rather than take the next logical step and increase the dosage to three quarters of a tablet 6 times a day, I instead took up high-cadence cycling [1] and that has reduced my tremor significantly.

Taking a dose 6 times per day may seem bothersome, but so far it has been a breeze. We've set up an alarm on the screen-phone to go off at 2.5 hour intervals starting at 8am. When I am out and about I wear a bum bag containing a small bottle of water and some half tablets. I'm also lucky in that, at this stage, when I eat doesn't seem to have any noticeable effect on the medication. I can also miss a dose by half an hour (or even one hour) and, at this stage, this also seems to have no noticeable effect.

[1] "Pedaling for Parkinson's..." thread.

jeffreyn, I did suggest early on to the neurologist to try half-doses twice as often, and he said he didn't think it would help my husband at all ... I may gather my courage and suggest it again. Thank you for this tip!