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JimandKym

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About JimandKym

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  1. ​Dr. Okun, ​Can you use a tens unit for back pain and sciatica if you've had DBS? Thank you.
  2. Dr. Okun, Recently I have began to have significant sciatic pain which begins in my lower back and radiates down my right leg to my right foot. I have not sustained any kind of trauma or other reason for the back pain. . I've never heard of this happening Parkinson's patient, sudden and severe pain??
  3. Dr. Okun, I would like to know if it is safe for me to use a TENS electrical stimulator with having had DBS? I have been dealing with sciatica and a low back strain. Thank you.
  4. Hello Dr. Okun and Dr. Foote, I recently ran across an article that had a patient in UCLA Medical Center getting an new type of DBS. It think it was called the Infinity DBS. The interesting feature was that it was programmed with a tablet type software. It was much more effective in programming and user friendly. Have you used this device? Would I be a potential patient for this, I am 50 yrs. old, have had PD for 19 yrs., I have had DBS with poor electrode placement, right side is threshold and marginal. I am now using the pump but I am still in a wheelchair due to balance issues. I have no other medical issues other than kidney stones occasionally.
  5. Dr. Okun, I am on the Duopa pump. I started in October of last year. Since then I've had the peg-j tube replaced seven times. This last time they used a different tube than the ones previously placed. is a large "y" type connector with a green stripe on the medication port. The very next morning, the tubing came apart leaving the empty peg tube going to my stomach and J-tube portion of it hanging connected to the pump. I of course had to go back to the hospital and get this replaced yet once again. The surgeon told me that this is the only tubing configuration that they can use now. The previous one is no longer available. This one does not seem like it will last very long before the tubing again pulls apart from the connector. Are you aware of this problem or what do you recommend? I wonder if your influence with the NPF would get any answers because I as of now have not been able to find anyone who is aware of this issue.
  6. Dr. Okun, I have been dealing with a backache for the last three weeks. I went to ER with their findings of sciatic pain. I was placed on Flexeril, given some pain medication and also prescribed prednisone. today is my second day on prednisone, I have absolutely no back pain and I feel like I have been "ON" like never before. could this be attributed to the prednisone? I have not had to use my wheelchair all day. We have gone out for lunch, ran many errands and even had a visit with my urologist. As well as a trip to the DMV! Everywhere we went I was up on my f. I have actually lowered my morning dose to 7.5 from eight and kept my continuous dose at 4.5. I don't know what is happening but I sure wish that I did. Because I would love to feel this way every day. it's like on a honeymoon. This is not just a mental high, I have also done a considerable amount of house work since returning home. I would not get done in three days what took me about an hour to do. Nothing to say but wow! I need to bottle it up and sell it!
  7. Dr. Okun, I am 49 and have had Parkinson's now for 19 years. I am currently on the pump and doing quite well with it. My morning dose is eight and my constant dose is 4.5. I'm also on sertraline, clonazepam for sleeping and my primary care physician just started me on Wellbutrin 150 mg once a day in the morning. I can perform all my own ADLs I even walk behind my wheelchair pushing it because my major problem is balance. The issue I'm having is difficulty in orgasm/ejaculation. Because of my balance problems I can only have sex either straddling my wifes legs or from behind her. Either way I can last for a ridiculously long time without reaching orgasm. I seem to have noticed decreased sensitivity in my genital region. I use Viagra to maintain an erection and have no problem getting there. it is just very frustrating not being able to finish. I have been to a urologist who did not have any suggestions beyond a pump which is not relative to the problem that I'm having. in my own research I found out possible long-term effects of the sertraline but nothing definite that is why I asked to switch to the Wellbutrin. Could this be a neurogenic bladder or prostate from Parkinson's? urinary wise I've had a number of kidney stones. And throughout the day I will get the urge to urinate but it ends up being five or six dry runs before I can actually go. even the use of pornography will not give me an erection or result in orgasm.
  8. I saw this topic and I have to comment. I too miss riding my road bike, I used to ride to work and was always on my bike. my PD has progressed too far for me to ride anymore. So I bought a Peloton spin bike. I could not be happier!!! and my wife does not worry about me when I'm on it, haven't got ran over yet! it is a bit expensive, about 2,400 for the bike along with the in-home setup. this thing is like a spin bike on steroids! it has about 22 inch screen on the bike where you login over an Internet connection. They have instructors with spin classes all day long. Then they have about six or seven scenic rides that are filmed through various national parks or other places of interest. the Peloton community is definitely the glue that holds the whole thing together, you're constantly encouraged and I guarantee you'll have a sweat when you get off that bike. Hope to see ya!
  9. Dr. Okun, I recently met a couple whose son was diagnosed with Parkinson's disease. He has been on the pump since March 2015, he got on during the clinical trial. He was diagnosed in 2014. he worked as a surveyor and was working in an agricultural field when had a significant exposure to a pesticide that was being sprayed over the field. At present he is not able to care for himself. He has numerous falls, tremors and rigidity and his voice has gotten unintelligible. The thing that surprised me was that his parents told me that although he is on the pump his continuous rate is only 1.6-1.8, otherwise he gets very dyskinetic. Hearing about this case certainly surprised me at how fast it has progressed and I just wonder if you've ever heard of something like this occurring?
  10. DBS

    Doctor Okun, A friend of mine who has Parkinson's recently had DBS surgery. he had bilateral placement at the GPI. He has gone back for two programming sessions where they have attempted to turn the device on and establish parameters for him. Each time that they have turned the device on his dyskinesia returns with a vengeance. yet when they turn the device off he is improved. he has gone four months now with DBS and they have still left the device off. I'm familiar with the honeymoon stage but did not think it would last this long. I'm puzzled as to what could be causing this kind of affect for him. Have you ever had a patient with this type of response?
  11. Dr. Okun, I am having a lot of trouble regulating my dosages with the pump. Tuesday of last week I started having a lot of dyskinesia with my pump setting at a continual dose of 4.5. This was reduced to 3.9 in intervals and I still was dyskinetic. My oral levodopa dose was 100 mg per hour prior to the pump. This irregularity with dyskinesia continued until Friday morning when shortly after starting my morning dose the pump alarmed indicating high pressure. I checked the clamps and there was no kink in the tubing. Upon attempting to flush the lines I found that my duopa line would not flush. I contacted the surgeon and they replaced the PEG-J tube finding that it had coiled up in my stomach. I am back home now and the problem with the pump is that I'm getting periods where I feel that suddenly I am off, having to use an extra dose. in the meantime I get extremely cramped with leg pain and back pain due to the rigidity. This has been going on since Friday when I left the hospital after having my tube replaced. During these times I use my extra dose which is set every two hours at 2 mL each time. I've used three of these today. I have an appointment with my neurologist to try and determithine the settings I should be at. At a rate of 100 mg of levodopa orally prior to the pump in using the sheet that they included in my medication information I calculated my morning dose should be 7. My continual dose according to my calculation using their instructions would be 5. I was once told that I'm using too much levodopa which is causing my bodies dopamine receptors to be full to where they will not accept any more levodopa. When I'm laying in bed or on the hospital stretcher and I am rigid, cramped with back pain and leg pain I find it difficult to believe that I have as they say, overdosed on the levodopa. do you have any suggestions for my situation? Thank you very much.
  12. Dr. Okun, could you explain why you would need a morning dose that is twice the continual dosage plus the three ml. that fill the tube? what if you were to do away with the morning bolus and just restart the pump at the previous days continual dosage? For example my daily levodopa is at 200 mg in the morning with the first dose. After running the calculation in the instruction book I came up with a morning dose number of 11 mL. Overall daily levodopa dosage is 1600 mg. this calculated out to be 4.375 for the continual dosage. At that setting for the morning dose, yes I get quickly on but I'm dyskinetic soon thereafter. my neurologist and I are trying to figure out the numbers to get this device to work properly. I would also like to ask why is a cassette only set to be used for 16 hours. I'm sure that is because you are asleep for eight hours. But would not this be great if you could leave the pump running then you would automatically be "on" the next morning. my neurologist is new using the pump and I appreciate your input on this.
  13. Hello Dr Okun. I've seen you at your facility a couple of times I have very much value your input. I am currently on the duopa pump. My morning dose is set at 4.5, my continual does is 4.0. I have been on the comp since October. Symptoms of impulse control and other issues similar to when I was on the agonist patch. I never had any problems on the generic carbidopa. That was the only drug I was taking. I did a trial on the patch when it first came out. Having had problems with Mirapex I did not continue the patch for very long and I will not be willing to do other agonist. This concerns me that I'm having impulse control problem and other symptoms similar to agonist. I don't think that my levodopa dosage by the pump is very high to be causing this. What is your recommendation. Thank you.
  14. Dr. Okun, Why does the formulation of carb/levo used for the pump need to be refrigerated? I wonder why it has taken so long to formulate this approach to avoid the digestive system. Would carb/levo work as well if it were a suppository? I understand this approach would have its own set of problems but the advantage of avoiding the stomach would seem to have it's own merits aside from the frequency of needing to take meds. Thank you so much for all you do.
  15. Hello RogindaUP, my name is Jim, I'm 48, I've had Parkinson's for 17 years diagnosed I was 30. After 18 years of marriage my wife left me, my two daughters soon followed. I say all of this not for any credence to the trials I've been through with this disease. I say this only to point out that we all experience this disease with life's challenges on many different levels. I'm sure she's a wonderful woman and you are the man standing there beside her as her strength. In my own case I was very worried as to how would ever find someone that would be willing to jump on my train wreck. I want to tell you that I did and life is a wonderful! we just got married in June! I can say without a doubt that the feelings of isolation, not being able to do the things you want to do or perform the tasks that once were done with ease, and many other mental things that go on in the minds of Parkinson's patient are the most dangerous. depression is without a doubt the biggest fight. It's terrible to lay around when you can't move or to be confined to a wheelchair when there are things that need to be done. There are many things that need to be discussed and subjects to be addressed. Hopefully get through some of these issues before they become a crisis. Let your wife know the you worry about things too, because she's scared right now and a lot of questions to be answered. Let her know you love her. As a Parkinson's patient I have a great fear of being abandoned. Is there any way to lighten the load of her being a caregiver for her mother. Are there other family members that can help out this. It may be a sore issue but sometimes you will have to force them to come to the plate and step up. As much as possible I have tried to relieve my stress in my life, I'm sure in time you'll find this to be a big factor. starting out I would say limit medications as much is possible to find out what works and what does not work there are a lot of medications for Parkinson's. They don't work the same for all of us and they have many side effects. Personally I would caution you against using any of the agonists, they're the worst as far side effects and they can really get away from you before you can grab a handle on it. Exercise just get out for a walk or do something every day. This is vital, it clears your mind gives you time to think. there's so much to say about this disease but you have found this forum and is a treasure trove of love and support and information from those going through the struggle with you. You're never alone. Know that you're in my prayers and thoughts and hope I said something that helps you.