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About SSmithvi

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  1. SSmithvi

    Urgent: Privacy Concern

    Yes, I spoke to the director of the technical team who was very nice and understanding. She deleted the posts in question that was accompanied by my photo. Apparently, if you have a blog your photo may appear automatically when you post something unless you go to your settings and remove it. The director told me that it would take a couple of days to be deleted from the Internet search engines. However, with my permission, she left the doctor's responses to my posts, because it was very useful information. It would obviously have been better to see my questions to put the doctor's responses into context, but I had no choice because I didn't want my dad's personal information circulating on the Internet with my photo.
  2. Hi, I was doing a search on the Internet, and I came across a lengthy conversation that I had with a Parkinson's specialist on your online Doctor's Forum with my photo. I was shocked. The forum has provided me with invaluable information related to my dad who has Parkinson's, but I was under the impression that information posted on the forum was restricted to the Parkinson's Web site which can only be accessed by members. And, I had no idea that my photo was attached to my posts. This was obviously done automatically, because I did not attach a photo. I just went to my setting and removed the photo. My concern is, I gave a lot of details about my dad's private medical condition on the Forum and since my photo is attached anyone would be able to view this information. It's very upsetting. Please get back to me as soon as possible to let me know if there is anyway you can remove this information from the Internet search engine.
  3. SSmithvi

    Voice Problems

    Hi, my 92-year-old father has advanced Parkinson's disease, and he is having more and more difficulty talking which is really disconcerting, because I had to relocate for work and I can no longer communicate with him on the telephone. We had to wean him off of Sinemet due to serious side effects, so the only medication that he takes regularly now is clonazepam. He takes a 1/2 pill every other night. He also takes Atrovent via a nebulizer when needed for excessive drooling and mucus in his throat. However, my mom says he does not drool much anymore, so mucus does not seem to be the problem. When he had bad days and had difficulty speaking, we treated him by giving him an Atrovent treatment, some mucinex and have him suck on some ice or sugarless candy. However, since mucus does not seem to be the problem now, I wanted to know what you suggest. I know our options are limited. We have a caretaker, and I told my mom to make sure she continues to give him some vocal exercises, as there are no speech therapists in the area trained to help people with Parkinson's, but is there anything else we can do? I read that some people get collagen injections, but I don't think my mom would go for that, and I don't think there is any ENT in the area that is trained to do that. Also, if he is not drooling much anymore, does it make sense to continue his Atrovent treatment? All of his food is pureed, but I know that he could still have food stuck in his throat due to the slow down in his ability to swallow. I am at a loss as to what to do at this point. I would appreciate any advice you can offer?
  4. Hi, my dad is 92 years old now, and he has advanced Parkinson's disease. We had to take him off of Sinemet about two years ago due to frequent, severe drops in his pressure. Currently, the only medication that he takes are: Aricept (10mg) daily, 1/2 dose of Clonazepam at bedtime and Atrovent via a nebulizer to help with excessive saliva/mucus in his airway. We also give him coconut oil daily which I think has really helped him, as he is more lucid. My mom is now giving him the clonazepam every other night, and she says he is fine. He doesn't have hallucinations anymore at night, and he rarely gets disoriented now. He can't walk anymore, but we have a caretaker who gives him exercise during the week. And, aside from trembling in his hands occasionally, he does not shake a lot, but he needs help with everything. A nurse suggested that we take him off of Aricept, and I have been wanting to do a trial of that for awhile, but I am not there to monitor it like I was with his other medications so I have been reluctant. Of course, we will consult with his neurologist, but I would like your opinion on how we can first wean him off of Aricept then maybe the Clonazepam. Your prompt reply to this inquiry is appreciated. Thank you in advance for your assistance and all that you guys do to try to help people suffering from this devastating disease.
  5. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    While there has not been any scientific study completed to my knowledge on the efficacy of coconut oil, there has been a lot of anecdotal evidence that it has really helped people with dementia and Alzheimer's. (I believe that a university in Florida was going to do a study, but I can't recall the name of the institution.) Like Dr. Okun said, it can't hurt. However, some people can get diarrhea. Hence, I suggest you start out slowly. I started my dad out with 1 tablespoon of coconut oil daily for a month to make sure there were no side effects. We put it in his cereal in the morning with a 1/2 teaspoon of cinnamon, which is suppose to help lower cholesterol and help with inflammation. I increased his dose to 2 TBLS a day after a month. And, now we give him 3 TBLS a day. I would not suggest doing more than that. We give it to him for breakfast, then mid-day; we put it in his Glucerna with a 1/2 teaspoon of cinnamon, and we put it in his soup at night w/o the cinnamon. It can go in anything, but it does get clumpy in cold items, so you have to stir it good. You can get it at a health food store. I would suggest that you only use pure or virgin coconut oil. It does have a funny after taste, but that does not bother my dad. I spoke to one lady who told me that after six months of giving it to her month who has Alzheimer's, they were able to take her off her meds. All I know is, my dad has been remarkably lucid since he has been taking the coconut oil. I hope this helps. Also, check out this link: http://www.youtube.com/watch?feature=player_embedded&v=DVD7ZuCe3vY.
  6. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    Hi, I wanted to update you on my dad's condition and get your advice on a couple of things. My dad, who is now 90, has been off Sinemet since September. He was diagnosed with atypical Parkinson's in 2005, but his doctor now suspects that he may also have Lewy Body Disease with dementia. Since we took him off of the Sinemet due to frequent drops in his blood pressure, he has been doing well, considering his diagnosis. His doctor wanted to give him Mirapex as a replacement for Sinemet, but per your advice and my research, I decided to monitor him instead and his doctor agreed. I also started giving him coconut oil in September, which he takes 3X a day. Since coming off the Sinemet and taking the coconut oil, he is more lucid and alert, and he rarely gets disoriented. His walking has not gotten any worse, his pressure has stabilized and he is able to keep his head up more when sitting. (We use a gait belt to assist him, as he cannot walk on his own.) Currently, he is taking one baby aspirin daily, Vit D and Centrum Silver multi-vitamins, and a 1/2 dose of Clonazepam at night which has really helped him with his night-time hallucinations. As you may recall, his main problem is uncontrollable drooling and excess salivation. To combat this problem, we give him Tussin (guanefesin) and his lung specialist recommended that we give him Atrovent via a nebulizer on an as needed basis to open his airways which gets clogged from thick mucus. This treatment has been effective and the side effects have been minor. His doctor also prescribed benztropine, which I gave him on a trial basis for two days and he tolerated it well, but we don't give it to him regularly because he has infected teeth and the dentist said if his mouth dries out too much that would make his infection worse. His other main problem now is his vision. He suffers from dry eyes, so we give him Systane every two hours. (He has a lens implant in both eyes due to cataracts.) I have two questions for you: His eye doctor prescribed Tobradex when needed, but his directions for use has been inconsistent. Initially, he told me to give it to him at bedtime for 10 days when his eyes get really inflamed, but I saw another eye specialist who told me to give it to him twice a day for only 3 to 4 days when his eyes are really flamed, what do you suggest? My other question is, my dad has been on Aricept (10mg) since 2010, I don't really think it has helped him much. Since he is doing so good cognitively, I was thinking about taking him off the Aricept. I did discuss it with his doctor months ago, but I never did it because we were focused on all his other problems. Now that he is stabilized, I want to take him off of it and see how he does, what do you think? And, can we just take him off of it or do we need to wean him off of it, if so, how should we wean him off if? He takes only one Aricept a day. As usual, I appreciate any assistance you can give him, as you and your team have been really helpful in the past.
  7. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    The medication his doc recommended is Clonidine. (Please refer to my two previous posts.)
  8. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    I forgot to mention that now I'm concerned about my dad's pressure getting too high, because prior to going on the Sinemet he was hypertensive. His pressure still fluctuates often, but it is not dropping often like before, maybe once or twice a day after a meal, but not every day. However, I have been keeping a chart, and I noticed that in the morning his pressure is elevated, so his doc wants to put him on some blood pressure medication at night. I am going to monitor him a little bit more before I do that though. I have learned that sometimes it's better to wait and monitor him, because we were given Midodrine to control his low blood pressure, but I decided to hold off on giving it to him until we weaned him off the Sinemet and as it turns out, he didn't need it after all. By the way, do you have any idea how long the Sinemet will stay in his system? As I said, he began using it in 2005 and stopped completed on Sept. 29, 2013.
  9. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    Hi, I just wanted to update you on my 89-year-old father's condition. I took him to his neurologist Monday. Due to the fact that his blood pressure and pulse have stabilized since we took him off of the Sinemet, he says he doesn't think my dad has Shy-Drager after all, which is good news. However, he believes he may have Lewy Body Disease. I don't know if this changes your position with regard to the Mirapex. I ordered the Mucuna Pruriens you suggested after discussing it with his doctor of course, but I'm wondering how effective it will be without the carbidopa. His doctor wanted to put him back on at least one Sinemet a day, but I declined, because it's clear to me that the Sinemet was not really helping him anymore. As I told you in my last post, he has been off the Sinemet now for a month (he started it in 2005), and his overall condition has actually improved except for the profuse salivation and drooling, thick phlegm in his throat (Botox is not available where I live), and he appears to have more difficulty walking. Also, as I told you, he has only eight teeth remaining all of which are infected and the dentist wants to take everything out one time. We have been extracting his teeth gradually over the past 2-3 years to reduce trauma, but now the dentist and the lung specialist concur that all of his teeth need to come out now. They said it would be easier on his immune system. His neurologist said he is medically fit to undergo the procedure, but I'm concerned since he's anemic. His WBC is good, but his RBC is a little low & his reticuloctyte absolute level is really low (we are doing more testing). My chief concerns are excessive bleeding and the additional anesthesia he would have to have to extract so many teeth one time. He usually does well with the local anesthesia, but we never extracted so many teeth one time. Are there any special concerns that I should address with his dentist given his age and diagnosis? Do you have any literature that you can share with me that I can give to my family so they can understand the consequences of him keeping his teeth? Per his doctors recommendation, I plan to start him on Atrovent via a nebulizer soon, because the thick phlegm in his throat is affecting his voice, mood, swallowing and it appears his breathing, because he told me that he has problems breathing at night.
  10. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    Hi, I spoke to my dad's doc briefly about the mucuna pruriens you recommended, and he thinks we should try it. I have an appt. with him on Monday, so we will discuss it in more detail then. It is very difficult to find though. I ordered something called mucuna dopa, I hope that is not a synthetic form of this supplement. Do you have a recommended dosage for this supplement, and can you tell me, since it contains levodopa, will protein affect the absorbency of this herb like it did with the Sinemet? So far, my dad has been off the Sinemet for a month. He continues to function although he appears to have more difficulty walking, but he was not exactly walking well with the Sinemet, and his main problem continues to be excessive salivation, mucus in his throat and drooling which is affected his voice and ability to swallow allows he still eats (he's on a pureed diet). I took him to a lung specialist who recommended that we give him atrovent with a nebulizer to help with the secretions in his throat (reminder: no one administers Botox here). He said there will be side effects but not as much as with the atropine or glycopyrrolate (that's what his neurologist prescribed). And, my poor dad, who is 89, only has about eight teeth left, all of which are infected. We have been extracting them gradually to reduce trauma, but the lung specialist concurs with his dentist that we need to take all of them out, because he is swallowing bacteria which can lead to a form of pneumonia that is very difficult to treat. (This is freaking my mom and siblings out.) Of course, I have concerns about extracting all one time too, especially given his swallowing issues, and although he does not have any side effects from the local anesthesia that was used in the past, we have never taken out so many teeth one time. He also said that the infected teeth could be making his salivation worse. Do you have any thoughts about this? I will discuss all of this with his neurologist on Monday, but if you have anything to add I would appreciate it. I really, really appreciate your insightful advice, as we do not have a movement disorder specialist here. His doc is pretty good with working with me, and I think he appreciates the info I give him from you guys as well. Thanks again to you and your team for all that you do and for your thoughtful responses to my inquiries.
  11. SSmithvi

    Excess Saliva, Hypotension and Dry Eyes

    Hi, I just wanted to give you an update on my 89-year-old father's condition. As I told you before, due to frequent drops in his pressure his doctor decided to wean him off the Sinemet, which he began using in 2005. His doctor also suspects that he may have Shy-Drager syndrome. He has been completely off the Sinemet now for two weeks. I have also been giving him coconut oil three times a day. So far, he has been more alert, lucid and his head has not been drooping as much. His pressure has also stabilized. It still drops, but only occasionally after a meal. I am actually worried about his pressure being too high, because prior to taking the Sinemet, he had hypertension. His pulse has also been a lot better, but it has gone up really high a few times. However, the shaking in his hands is more pronounced, but not much. Other than the fact that he is still drooling profusely, my main concern right now is that he is having more difficulty walking, so I don't know what to do. His doctor and I agreed that we would monitor him to see how he functions before putting him on Mirapex, but I am still very concerned about the Mirapex, especially since he has been having frequent spikes in his pulse. Per his doctors advice, I am taking him to see a lung specialist this week, and I am hoping he can help me figure out how to proceed. Do you have any additional advice for me?