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Didi last won the day on April 23 2014

Didi had the most liked content!

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About Didi

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  1. Didi


    My husband was diagnosed with PD about three years ago and started on Sinemet about a year ago. He is on 2 tabs of Carb/Levo TID and has been since starting one year ago. He is doing very well on this regimen and is very active. He does have some very mild dyskinesia that started soon after starting Carb/Levo but no motor fluctuations to speak of yet. A few days ago my husband was coughing up some phlegm in his throat and began to have an episode which I would describe as stridor for about 1-2 minutes. -- his eyes became wide and fearful and he had a loud-high pitched wheezing on inspiration and expiration. He was not choking on any food or foreign object this was just phlegm, and saliva. He reports the sensation that his "windpipe narrows and becomes very small". After the 1-2 minute episode there are no more symptoms. He has had this happen before -- he thinks, even a few years before diagnosis-- but only occasionally--perhaps 5 or 6 times in the last 5 years. He does have some issues with speaking softer, occasionally voice comes out in a whisper. but when he consciously thinks about putting effort into speaking this is not a problem. This has not worsened much over the last year and has been stable. He did see a speech language pathologist about a year ago --because he does throat clear and occasionally cough after eating. He passed his tests with SLP with flying colors. My question is -- can stridor be a symptom of Parkinsons -- even this early on when he is doing so well otherwise. I know that stridor can often point to MSA and he did present with bilateral symptoms early on and does not have a typical resting tremor. However, he has absolutely no other autonomic symptoms, and his progression seems quite slow. I hesitate to make a big issue of this "stridor" as the episode was short and has only occurred a handful of times. However if this were to continue -- is this most likely from PD or should we look for another cause. And if it is PD --what can be done-- it is pretty scary when it happens.
  2. Thanks everyone for your help. So far so good-- not stomach virus yet. But one of my married sons just called and he is just getting it now-- so I know he is not out of the woods yet. I appreciate all of your advice. Dianne, I do have Zofran- however I hestitate to use it on anyone for a stomach virus. Using anti-nausea, or anti-diarrheal medications for gastroenteritis (especially in the beginning) tend to be counterproductive by delaying the recovery time. Vomiting and Diarrrhea are the bodies defense mechanisms to rid the body of the virus. That's why when people travel it is no longer reccommended to take anti-diarrhea meds. But if he continues to have long-term vomiting - -I have some on hand. Thanks for the reminder. We'll just have to do the best we can, if he gets it. Hopefully it will be short-lived. I'm glad to know about diluting in OJ or putting tablet between teeth and gums. Thank you all for your wonderful advice!!
  3. I am trying to be proactive and prepared. At a large family gathering this weekend about 25 out of 30 of our extended family have come down with a stomach bug involving vomiting and diarrhea. My husband is so far one of the few survivors who has not succumbed to this illness yet. I have it, and though I am trying to be meticulous about not contaminating things, and he is sleeping in another room, I want to be prepared for the inevitable. My husband is on 2 tabs of 25/100 Carb/Levo three times daily. If he gets this stomach bug and is vomiting constantly. I'm wondering how he will do with his medication. I'm thinking that crushing the pills will help with faster absorption in case he vomits right after taking them. Does anyone have any advice?
  4. My husband had been diagnosed with PD for 2 and a half years before we started medication. After a rough first start with anxiety and akathisia, we titrated up slowly. It seemed to take a long time to take effect. And over 2 months we titrated up to 2 tablets of 25./100 Carb/levo t.i.d. He continued to improve after that. He has been on this dosage for 2 months and 3 weeks and doing very well. One thing I notice however, is that sometimes he will be rocking his body back and forth when sitting or shifting his weight back and forth when standing. He has noticed this as well and commented to me about it. We both thought we are just noticing this because of the dramatic change from very little movement to more normal movement. We rationalized that now he is just moving more like a normal person would. After all, I tend to fidget some and don't stay stone still. We thought perhaps going from paucity of movement to normal movement was such a change that it seemed odd to us. Yet I still think sometimes he does move more than should be normal. This doesn't happen all the time -- sometimes he is still stone still such as when watching TV or reading (doesn't really seem to relate to any on/off periods yet). His movements seem purposeful and he can stop them - they are not odd or unusual movements, just like being a little hyperactive- no one else would probably notice this. What I am getting at is -- due to this mild hyperactivity should we be concerned that he is overmedicated. He doesn't seem bothered by it at all and he is doing so well. Even his non-motor symptoms such as apathy, depression, and episodes of anxiety have resolved recently. I hate to change his dosage since he is doing great. Are there any risks to the possibility that he is slightly overmedicated? Would this increase the risk of dyskenesia sooner, or on/off periods? Thanks for any insight you have.
  5. Dear Dr. Okun, My husband (age 52 Dx. 2.5 years ago) began carbidopa/levodopa this June. We had a rough start and on first initiation he suffered from extreme insomnia, agitation, and anxiety. This subsided after stopping the carb/levo. We decided to try again in July more slowly and it went better but he had no positive response on any symptoms. On reccommendation from his MDS we titrated up to 1 1/2 tabs of 25/100 three times a day with still no response. Again, under instruction from MDS in August we slowly titrated up to 2 tablets of 25/100 three times daily. It took about two weeks but we started to note a response on the 2 tabs. The improvement in his symptoms continuted to improve gradually and appears to still continue to improve each day. I even notice his gait is improved with minimal shuffling now. My husband primary symptoms were bradykinesia, rigidity, dystonia and an atypical tremor (action tremor), shuffling gait ... All of which has now improved a great deal. What confuses me --( besides his odd extreme anxiety on initiation) is -- why did it take so long for a response. I hear of Levodopa challenge being used to Dx Parkinsons. That never would have worked for my husband and it would have appeared as if he did not have Parkinsons. (he does have a positive DAT scan). So many I read about on the forum had a response on day 1. I thought that levodopa had a short half life and that it would work right away. Why the slow gradual response in my husband?
  6. Trev, I'm sorry you are dealing with similar issues - It is very disappointing. I hope you can get a med adjustment that will help you. Here is the latest update for our situation. I emailed the MDS who responded in a couple of hours. I was told not to give up yet on C/L working. He just may need a higher dose. We are to try titrating up very slowly by 1/2 tab at a time until by day 26 he will be on 2 tabs of C/L 25/100. He had some symptoms of anxiety the first time he tried C/L so they want him titrating extra slowly. So we will start trying that tomorrow and see how it goes. I will update you on his progress Trev. Can you call or email your MDS for advice? Mine is very good at working with us over the phone or email so that we don't always have to make a trip in.
  7. It is 25/100. Yes, the lack of respone does have make me wonder. He has some very typical features: the bradykinesia, cogwheel rigidity, shuffling gait, no arm swing, soft voice, facial masking He also had a very positive DAT scan. Dx Feb. 2014 by neurologist (immediately on seeing him) Confirmed 6 months later by MDS. He does have some atypical features: started very early with bilateral symptoms and his tremor is an action tremor not a resting tremor. Because of the bilateral symptoms early on I wondered about one of the Parkinsons Plus Syndromes but he has none of the autonomic symptoms that go along with any of those. I put a message in to the MDS. Waiting to hear what they have to say. I was just hoping to hear from someone for whom 1 tablet of 25/100 was not enough, but had improvement on a higher dose. Because if C/L doesn't work for him, well that doesn't leave us much hope for any symptom relief.
  8. Thanks Stump for your help. That is sort of discouraging news for us as we don't see much of any benefit with 1 tab. I'm sending an email into the MDS office today.
  9. My husband has titrated up slowly on carbidopa/levodopa 25/100 to 1 pill 3 X a day. He has taken three full pills a day for 3 days now with no response. Do most of your patients show a response to C/L at this dosage? Does this mean he won't be responsive to c/l or that he needs a higher dosage? How long do you have your patients wait to see if the dose will be effective? Would you titrate higher -- if so how soon?
  10. Didi

    So, the dystonia thing is legit

    Dianne, With the cervical dystonia you had, was it a constant tightness? My husbands seems to come and go and seems to sometimes be related to the position he is in. So I'm not really sure if it's dystonia or not. With dystonia is it a constant tightness of the muscles and can one consciously and actively relax or move the muscle another direction or is it frozen in position. I'm trying to determine if what my husband is experiencing is true dystonia. I'm assuming that levodopa does not improve your dystonia? When you get the BOTOX injection, how long does it last?
  11. Didi

    So, the dystonia thing is legit

    I think my husband is struggling with Dystonia as well. He has the typical issues of flexed arms and flexing at knees. But he also complains that sometimes when he lays in bed he realizes his head is completely off the bed as if he's unconsciously holding his head up and he has to concentrate on relaxing those muscles and laying his head down on the pillow. In addition, his most troublesome symptom lately is whenever he is sitting he gets an uncomfortable tightening in his abdominal muscles that affects his breathing and he either has to stand up or slump back in an easy chair to get into a position where those muscles relax. I'm not sure what it is -- but I'm guessing dystonia, will be asking the MDS at next appointment. He just started c/l 25/100 (1 tab 3x a day) but it doesn't seem to be doing anything for him at all -- not helping with any symptoms. He is 50 and Dx Feb. 2014.
  12. Stump, At what dosage was Sinemet immediately effective? I see you are now on 1.5 tabs of 25/100. Was that the dosage at which it became effective or have you titrated up since then? Thank you for our help.
  13. I just realized I explained the dosage wrong it is: 1 tablet of 25/200 three times a day.
  14. Thank you so much to those of you who took the time to respond. I realize that everyone is different in how they respond to medication and I was hoping to get a survey of how soon and at what dose various patients respond to sinemet. I'm sure some on the forum have been on it for so long they might not remember how they responded in the beginning, or maybe many are not on it yet. But I really appreciate those of you who offered your experiences. We are now on 3 tablets of 25/100 three times a day: 6:30AM, 11:30PM, and 4:30PM. This is the 3rd day and really do not see much positive response. It is disappointing. In a few days I will contact MDS and see if they want to up the dose. If we don't get much of a response we will wean back off completely. Since it does not stop progression there will be no point in staying on it and risking the side effects and damage it can cause without any benefits.
  15. He has been taking the carb/levodop 25/100 on an empty stomach. He's not noticing any results from it. Maybe he will need a higher dose for any results. It's kind of scaring me that it isn't helping him -- if levodopa doesn't work for him, well ........... this will not be good .......