Helping Those Who Care for Parkinson's Patients
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My husband was Dxd with 3rd stage PD end of November of 08. He had most of the symptoms from the bent walking with curled fists to shaking hands unable to sign his name to excessive drooling to poor sleep caused by crazy dreams but the most disabling of his symptoms was constipation that was extremely difficult to get a hold of and the Dystonia that wracked the right side of his body in painful spasms that he said felt like he was being tassered. In early December he was taking 3 Sinemet 100/25 a day. Now he is taking 3 Sinemet 100/25 every three hours and a 200/50 at bedtime as well as Clonazepam. he was starting to get very bad Dyspepsia symptoms. Bloating burning crampy. It got so bad that I took him to the ER. They thought he had a bowel obstruction. To make a long story short he spent 5 days in the hospital, had a CT scan and a colonoscopy, and was sent home with no answer to his problems. I was desperate as I tried to find something he could eat or drink that wouldn't cause his symptoms to worsen. Because I take Losec for acid reflux I gave him one to see if it helped and it seemed to a bit. I also asked his Gastro-enterologist if he should take Domperidone as a pharmacist suggested it to me. No, the Gastro guy said, Domperidone is not recommended for PD patients. This made no sense to me as my daughter-in-law who treats PD patients said it was used in her clinic a lot. Two nights ago, while Googling his symptoms, Parkinson's and Sinemet I came upon a number of web sites saying the Sinemet can cause Duodenal ulcers and Dyspepsia! Yesterday I finally was able to connect with his neurologist who said yes, it could be the sinemet that is causing the [problems he has had for the last 3 weeks that he was hospitalized for. He recommended he take 2 losec a day as well as 2 domperidone three times a day to try and get his dyspepsia under control. He also said he needs to continue to ramp up his Sinemet to control his increasing PD symptoms. As you can imagine I was very upset with the fact that a neurologist who specializes in PD could not figure out what was causing the dyspepsia and it took me Googling to figure it out. When I phoned his office to tell him what I had found, his nurse told me looking up medical things on the internet was not a good idea because it gave us too much information and she told me I should just listen to what the doctors say. Can you imagine how I felt when I heard that? Has anyone heard of this kind of a reaction from that dose of Sinemet? Can I trust his Neurologist anymore? Is there another PD medication that wouldn't be as hard on his digestive system but still help his rapidly increasing PD symptoms. The neurologist told me a person can take up to 25 Sinemet a day. My darling is getting very close to that the way he is going. What happens when he gets to 25? Can I trust that neuro? It is so sad, it is happening so fast, he is the love of my life and I can't help him. I have arranged an appt with another Neurologist to get a second opinion. I understand that PD is a difficult disease as it presents it self in many different ways and different intensities, but I have lost faith. Any helpful hints would be appreciated. Jeannie |
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You are right on the money, get a second, and a third opinion! We have seen FIVE neuros in our town, and incredibly, ALL of them had different med regimes for my husband, some radically so. We saw a fairly new neuro last fall, who made me sick to my stomach when he said "Well, I believe people should be medicated". When I asked about side effects and complications, he dismissed me. So easy for these guys to prescribe, they dont' have to live with the pain and consequences of the damn drugs. We actually walked out of this guy's office with Rx's for FIVE different meds from what my husband was currently taking! Oh, and watch those Rxs, the doc said one thing in his office, the page he printed out for us was left blank in part and the other part contradicted what the doc had told us, and to top it off, his nurse told us something completely different from what the doc had told us in his office on how to ramp off the old drugs and onto the new ones he prescribed...when I pressed for them to WRITE IT OUT FOR ME, they would not do it. Needless to say, we have never been back to this guy. Just because someone has their license means little to me now. You have to make sure they have the credentials and know what they are talking out AND a comfort level you can work with. I personally believe you can never really know too much about PD, we have to live with it every minute of every day and knowledge only helps us. Docs don't like it because knowledgable patients/caregivers take more time in the appointment and that takes away from their golf game. I had the same experience with my ob/gyn when I had my son, they actually told me to stay off the net. Yea, right. You do what you need to do, learn as much as you can, ask as many questions as you want, and if the doc doesn't like it, too bad. Heck, ours charge $1200.00/hour ($300.00 per 15 minute appt.) and doesn't it seem fair that at that rate, they accomodate whatever questions we may want to ask? I mean, if I were getting $1200.00 an hour, I'd tell folks anything they wanted to know, even down to my underwear size! Keep shopping. And don't forget sometimes the nurses seem to know MORE than the docs. And they are usually FAR more helpful, compassionate, and understanding. Good luck, and stick to your guns! |
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My husb has been taking 2 sinemet 5x day for about one month now and is experiencing the same problems. We did see his primary dr and he said the meds are causing it and recommending for my husb to use miraLAX to help. All of his Drs. are at UTSW in Dallas. In addition, I'm serving him double fiber english muffins, lots of fruits, plum source, and whole grain cereal. At the recommendation of several on this site I've also started using the coconut oil. I cannot say that any of this has worked entirely but the bowels are moving a little bit each day. Some days more than others. |
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Thank you for your responses and great support. I needed that. Caregiver Mary I empathize with you and your husband's sinemet related problems. What I have learned since finding out he has Dyspepsia is that all the whole grains/ raw fruit and veggies that I have been feeding him make it worse. I searched online for dietician sites that recommend diets for this problems and it is mostly white, bland no fat food. Here is the link: http://www.scribd.com/doc/185513/Peptic-Ulcer-and-NonUlcer-Dyspepsia-Diet We have been doing that for the last 2 days and though he has some improvement, it could be the hike in Domperidone and Losec. I will look up Miralax to see what it is and if it might help for him. He never liked Yogurt before but finds it very soothing to eat now. GrannyJ |
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| Happygranny: First I wanted you to know about Requip as mentioned in another post. Yes, it is an agonist. MY RX is actually the latest version of Requip. It is an "extended release" version called Requip XL. The agonist feature allows a faster than usual release of L Dopa and the extended feature evens the release over a 24 hour cycle. I do not recall from my patients forum under PateintsLikeMe whether it has been paired with Sinemet. I use Stalevo as a primary Ldopa release RX probably because my tremors are not as severe as most others seem to be. I have an excellent neurologist who seems to be with a state of the art group so I trust almost anything he says---but not everything. For example he asked me if I would consider DBS (Deep Brain Surgery). I am a heart patient also and told him my cardiologist would have his own heart attack if he thought I would agree to DBS att age 77! I dont entirely trust internet info either but 2nd & third opinions would be in my playbook if I were your husband. Onthe constipation issue have you ever tried something as simple as an OTC stool softener? I have found the coconut oil capsules (4) work for me but a softener called Colon Cleanser was at one time working pretty well. Bob C |
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Lurking is totally right on about some doctors and their egotistical attitudes. Off topic, but sort of on: I have a friend who was literally told to "shut up" by a doctor when she complained while he was examining her stomach; he then proceeded to rip up her stomach to the point where it had to be taken out completely and replaced, by another doctor, with an artificial stomach fashioned from her small intestines. The first doctor was completely incompetent, and his ignorance was matched only by his attitude. She is now waging a $1.5 million lawsuit against him. I, for one, have come across more than a few doctors who are almost as bad. They think that just because they've read some books and know some jargon that we don't that that somehow makes them better and more intelligent than we are. Anyway, for the constipation, my dad has actually found Activia yogurt helpful, as well as the coconut oil capsules. |
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First: a question for all of you - I had heard about Domperidone through my gastro specialist when talking with him about my PD husband's severe constipation. He talked about Domperidone, but said that it is not on the market in the U.S. - only in europe (unless I am confusing this with another drug with a similar name). For responses on neuros: we are on our third Neuro. The first insisted that my Pd'er didn't have PD and was rude to both of us. The second one diagnosed on first visit and was wonderful, but is now retired. The third is also wonderful and so helpful. We have been fortunate. If we had stayed with the first one we would be in terrible shape by now! For constipation: it is a daily battle! Miralex was recommended by our general gastro, but it didn't work for my husband. He is currently on a variety of things: stool softeners and Phillips etc. He also eats organic yogurt with the added bacteria (I can't remember the brand, but will let you know when I check that out). He has found that to be helpful. We also eat a very healthy diet. Ann Wood has a recipe that worked for her husband. Hopefully she will point you to that concoction and hopefully that will give some relief! |
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| I think your doctor is correct, domperidone is not approved in the US. |
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Yes, Domperidone is not available in the US, however as we live in Canada we have access to it. He has been taking 2 three times a day with 2 losec a day, for 5 days now and there is a little improvement, but not enough. We are starting the process to have a gastroenterologist appt and see about testing for Gastro Paresis. We will definitely not have the same Gastro-guy as when he was in the hosptial. That is the one who sent my husband home with no help at all and no recognition of the connection between his PD and the Dyspepsia. Yesterday we had the opportunity to tell the Movement Disorder Nurse Patient Care Co-ordinator what we thought of the Neurologist there who didn't make the connection either, as well as his nurse who told me not to search for info on the internet and to listen to our doctors! We see another Neuro in a few weeks and maybe that will help us feel like we are being given good care. Thanks again for all your support and input at this time. |