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About JimandKym

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    Advanced Member
  1. Stimulator for back pain

    Hello dr. Okun, I'm 51 years old and I have had Parkinson's for 20 years. I had DBS at the stn bilaterally in 2007 I spent the last six months with intractable pain diagnose that sciatica as a result of degenerative disc disease in L4 L5. Apparently I cannot have an MRI. I want to get some kind of relief as this is a great source of depression for me. Is it possible to have a spinal stimulator or drug pump along with DBS? Thank you very much
  2. Is this RLS?

    Dr. Okun, for the past 3-4 mos. I have began having very severe cramping in my left leg/thigh. It is accompanied by the urge to raise my leg and bend the knee. This is only on the left side. It only occurs at night in bed. Does this sound like RLS? If so Requip, correct? My MDS prescribed safinamide for me to try and eliminate a bit of the off time that I have. Although it is not much at all. I have read about some contraindication when taking SSRI and NSRI. Thank you.
  3. TENS unit and DBS

    ​Dr. Okun, ​Can you use a tens unit for back pain and sciatica if you've had DBS? Thank you.
  4. nerve pain

    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??
  5. 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.
  6. New type of DBS

    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.
  7. duopa pump peg-j tube

    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.
  8. 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!
  9. neurogenic bladder

    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.
  10. biking

    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!
  11. 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?
  12. 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?
  13. duopa

    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.
  14. Duopa pump.

    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.