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JimandKym

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About JimandKym

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  1. Severe pain, spasticity

    Dr. Okun, I was referred to a pain management center for spasms in my legs, lower back and severe pain After many tries at treatment strategies and absolutely no relief he prescribed baclofen. I had very good results, but the effect was relief for 5 hours. He prescribed twice a day. Dr Okun, these spasms are primarily in my hamstrings and the pain radiates up and into my buttocks and sacral area then to the lumbar region, where by this time I am at my limit. The pain is severe, so much that so that I have been having suicidal ideations. I am on the floor rolling about with leg and buttock, sacral and lumbar pain for 8-9 hours with no sleep. He had me on Percocet 5/325 once a day-will not go further with it. His latest comment was that perhaps I should try to shift my focus off my pain by doing a puzzle or imagineering, etc. Are you kidding me!!!!! I have to get off the baclofen, too severre side effects- worsening ideations, etc. I dread going back to not having the little relief that I did have. HELP! Dr. Okun, I am beyond desperate. I am not drug addicted. You can have the meds I don't want to live in pain like this there has to be answer. We have been dealing with this issue since May. Your recommendations and comments may be harsh but PLEASE let me have it. I am seeing a psychiatrist, have been since 2 yrs ago due to former marital problems.
  2. Is this dystonia.

    Dr. Okun, I have been dealing with severe back pain since April. I have been told by orthopedic surgeons as well as pain management doctors that I have a degenerative disk at L4-L5 but that it should not be causing the degree of pain that I am having. I have had x-rays, spinal CT, cannot have MRI due to DBS. I have another theory on the issue, that being severe dystonia. I used to have a severe gait imbalance where I was practically walking on the outer edges of my right foot. I had such dystonia that I could not place my right foot flat on the ground. This persisted and I got a tailors bunion at the base of my right toe. After some time, I cannot state why, but my right foot falls flat and I no longer have the problem on the right foot. My left foot, left leg, left knee and left hamstring are now giving me excruciating pain. It feels as though the muscles in my foot are turning my foot to where it is on its lateral edge. Not unlike my right foot used to do. I theorize that this is causing my left foot pain. My left tibia feels as though it is being rotated and torn from my body. My hamstring muscles are constantly severely spasming. This is radiating up to my sacral area and in turn causing L4-L5 issues. I do not disregard that I may have DJD but the pain never starts in my back. It is usually spasms in my hamstring which progress. I have been going to a pain management clinic here in Orlando that is affiliated with one of the hospitals here. The course of treatment that they have recommended is cortisone shots at L5-S1 and 3 appointments now where I have had trigger point injections in my lower back area. Which have not had any effect. I feel as though that they are not or cannot address my complaint. They do not do any invasive procedures in the office; they are affiliated with the hospital but do not do any OR type procedures so this is what I am left with. Dr.Okun, this issue as well as the difficulty getting pain medication (he prescribes one tablet a day) leaves me on the floor (position of comfort) in tears, unable to sleep probably about 2-3 nights a week. Do you think this theory of my gait is plausible? Is there a gait evaluation clinic at any of the PD Centers? Would Botox work in this case? Would they be available at the Movement Disorders Center? Can you make any recommendations? Your help is greatly appreciated.
  3. 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
  4. 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.
  5. TENS unit and DBS

    ​Dr. Okun, ​Can you use a tens unit for back pain and sciatica if you've had DBS? Thank you.
  6. 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??
  7. 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.
  8. 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.
  9. 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.
  10. 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!
  11. 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.
  12. 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!
  13. 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?
  14. 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?
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