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    Thanks for your very kind responses. Yes, every day is like a delicate see saw, balancing the meds to suit.We are adjusting to this new situation. I'm reluctant to increase the meds any more. The neurologist wants one thing the psychiatrist the opposite, both seeing it from their own perspective. Dh is stuck in the middle.

    dbs and duopa pump

    In response to Noah's post. I've been away from this forum for a few years but if you read my earlier posts you will see that my DH also had extreme problems with the oral medicine more so from point of mal-absorption rather than nausea. In fact he got such little benefit from any oral medication that his weight loss was dramatic and dangerous. He received the Duopa pump in late 2011 and it was a gamechange r for him. Instead of lurching from OFF to dysknesia within minutes he was able to eat again, no nausea at all, he regained his weight and although he still suffered OFF's during the day, the smooth absorption of the medicine directly into the gut allowed for a massive reduction in his dyskinesia. Now, 6 years on we find that eating is causing immediate OFFs again but we've had a good run and the pump is still a dramatic improvement. It doesn't, unfortunately, address the cognitive issues. Of course, everyone's experience will be different. This is our account.If you have any further questions, I'd be happy to help.


    Hi to all you caregivers. I'm visited this forum a couple of times a few years ago and just recently got back on so hello to everyone. My DH was dx'd almost 11 years ago with early onset PD (47 then now 58) Over the years we've been through the whole gamut of problems with this dastardly disease. I have been caring fulltime for DH now for 3 years and I would estimate that he is somewhere in the latter part of Stage 4. (the dr agrees that he has advanced PD, but will not be more specific). He has been diagnosed with PDD and suffers a lot with delusions/hallucinations and episodic psychosis. After a recent bout of psychosis, I had to reduce all his meds leaving just Levadopa (24hr Duopa) and Aricept, Seroque & Clonazepam at night. I finally got him settled from his agitation and although I've pretty much tweaked back to his normal meds his motor function has not returned to where it was before this last episode . I'm left wondering is this the new normal and it this the way most people progress at this stage? Do all patients eventually have to give up motor function to help control cognitive problems? I'd appreciate your opinions either way.

    confused re. medication

    Dr Okun, My DH is almost 7 yrs since Dx, early onset, rigid type, very rapid progression. Dr. has Dx IPD, with severe motor problems, intolerance of agonists and unsuccessful oral medication resulting in Duodopa (2 yrs now). He had been suffering severe OFF's every 2 hours even after 8 bolus doses. Based on this his Dr diagnosed DDS, even though he had none of the usual symptoms. He added Comtess x 3 daily, which has resulted in a significant improvement in motor symptom (2 or less bolus doses), but increase in confusion, hallucinations, dyskinesia and paranoia. My DH obviously is now overdosed and I am titrating his continuous dose/Comtess downwards to hopefully achieve optimum level. Is it possible that the extra bolus' were actually causing the OFF periods. This is what it seems to do now, which make me reluctant to administer extra doses. This puzzles me and your kind advice would be welcome.

    Duodopa pump

    My husband DX 4.5 yrs ago at 47 years, has deteriorated rapidly to the point where hs was taking 1150 mg of levadopa and still lurching from severe "offs" to severe dyskinesia, during the course of the day. Needless to say, his quality of life was extremely poor. Luckliy he was approved for the Duodopa pump and we thought this was the answer to our prayers. However during the trial period last week, during the nighttime, he became extremely agitated, delusional, wandered across the hospital wards and at some point pulled out the NG tube. Luckily, the hospital are still willing to continue the treatment, but frankly I am concerned about this development. Does this mean that he cannot take LDopa in this form, does this point to him getting dementia. Is it really idiopathic PD? There are so many questions and much as I would like him to continue the treatment, I'm worried that it might do more harm than good. I would appreciate any advice you can give me.


    Hi. Just thought I'd let you know. My husband has been recommended for the Duodopa Pump, which he hopes to get over the next couple of months. We are hoping that it will change his quality of life immensely. Will keep you posted.


    I am at a loss. He is vigilant about taking the L'dopa 30 mins before meals, has been avoiding all milk and milk related products, with the exception of 1 small pro biotic yoghurt per day, takes a stool softener every day to remain regular, doesn't take any supplements. This past few days, since we have upped his Stalevo again, his dyskinesia has become intolerable again but when we lengthen the intervals between doses, he usually goes OFF and needs a dispersible to come around again. This truly, is a most frustrating illness!


    My husband was DX just over 4 years ago @ 47 yrs and has major problems with the absorption of levadopa. Up until recently his medication was the following; 100mg of Sinemet every 2 hours accompanied by 6 doses of Comtess 200mg of Stalevo and .5mg x 2 Rivotril at night time He also had the option of adding Madopar Dispersible x 3 or sometimes 4 times per day which he had come to depend upon. He was experiencing major problems with almost everything he ate as it always affected his next dose. Conseqently he has lost a LOT of weight over the last 12-18 months in particular. On that dose of Ldopa he also experienced quite severe dyskinesia. He has never suffered from tremor, just rigidity. His DR is trying to move him to Stalevo x 6 times per day at longer intervals and has also added Azilect once daily. We are in the process of moving to this dosage and has seen some improvement in the dyskinesia, but not so much in the OFF's which are affected by his meals, even at the longer intervals. He has tried smaller meals/snacks more often but there doesn't seem to be any particular pattern to the OFF's. Some days he can eat something light and not go OFF, the following day he does exactly the same and has a major OFF. Everywhere I have read, it seems to be that protein is the major problem,so I just wondered if you have ever heard about this. Any dietary reccommendations for PDers that I have read about, are mainly concerned with the consistency of the food, because of swallowing problems. My worry is that he is not able to get enough nutrition without suffering the OFFs and that this will ultimately affect his general health adversely. I would welcome any comments or suggestions.

    Tenured Spousal Caregivers

  10. BIGMAC

    Tenured Spousal Caregivers

    Hi Louise. Don't know if you are still following this thread, but I do agree wholeheartedly with you. I am the spouse of a PDr who was 46 when diagnosed 4 years ago. The hardest thing I find is the lack of comparitive information available to Young Onsetters. I have tried on different forums and although the information was invaluable, everything seemed to relate to older people. Anyone with anything approaching our problems seemed to have been diagnosed for many more years or they had been definately diagnosed with a PD+ disease. I think it's very important for caregivers to YOers to talk to each other, compare notes and offer support for the types of worries that affect younger people with kids, mortgages, jobs etc.I would welcome any comments or advice from from anyone, but particularely anyone who might identify with these problems in particular.
  11. BIGMAC

    change in medications?

    Thank you for all your help on the forum. It is such a comfort to have someone to hear all our worries big and small. My husband was taking Sinemet 110 x every 2 hrs (8 daily) with a 1 x Sinemet CR at night and Requip 2mg x 3 times daily, but found that the wearing off was happening between doses. He was then switched overnight to Stalevo 100 x 7 times daily and a Stavelo 200 at night along with the original Requip 2mg x 3 times daily. Unfortunately he suffered terrible dyskinesias/chest flutterings/nightmares/panic attacks etc. with the Stalevo and we didn't see any major improvement in "on" time, so after 6 weeks we asked if he could go back to the original medication with a view to trying something else. Again, he switched back overnight, only to find that that the Sinemet seemed not to work at all with hardly any "on" time. Also when "off" he felt compelled to continuously move around to find a comfortable space, or in his case he had to be carried and pushed as he was incapable of any independent movement. We made an emergency appointment and Clonazepam .5mg at night was added and the Requip upped to 8mg x 1 nightly. The first night was great and he got a good 6 hours sleep with no disturbance. The second night however, he was back to severe cramping pain in his legs, couldn't get comfortable and his body temperature fell so that he complained of extreme cold all over even though the room was stiflingly hot. This lasted all night with no let up until he got his first morning dose of Sinemet early at 5.00 am. Now, at a loss as to what to do and dread another night! Your advice would be greatly appreciated.
  12. BIGMAC

    YOPA Caregivers

    Hi Guys, Just thought I'd lend my two penny's worth! My husband was diagnosed 3 yrs ago at 47. We have an 8 yr old son and what can I say? It could be worse, but not much!! Anyway good to know you're there and I wish you all the very best!
  13. BIGMAC

    parkinsons scale

    Not sure if I posted my original message correctly, so here goes again. Apologies if I have repeated myself! My query is in relation to the UPDRS (unifed parkinsons etc.etc). If it involves monitoring over 2 twelve hour periods, the first with medication and the second without, how is the resulting scale judged. My husband who has pd would probably score a very low scale with medication ie(showing very little symptoms) but without medication would show an extemely poor result (ie. he becomes completely paralysed when "off" or without optimum medication. Although he has only been DX with pd for 3 years, would he therefore be considered at say the lower or the advanced stages. Are the results of the 2 monitoring periods somehow combined and an average found or how does it work?