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siak last won the day on January 10 2016

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About siak

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  1. siak


    Dr okun , along this line of discussion about freezing gait, I also am very bothered by the sticking of one foot and it causes me to fall frequently. I cant use a cane or walker because it just seems to confuse me further. My sinemet no longer is effective ( I cant tell any difference between when I am off or on). I have had DBS and it helped the freezing for about a year and then the freezing came back even worse. I have tried all the cues that I have been told to do, but nothing seems to work. Is there anything that will help me to stop freezing so much? WHy is there not much research on this since it seems to be a common affliction for parkinsons patients? thanks
  2. siak

    freezing gait

    MY question is: Is it possible to be able to walk again if I cannot walk anymore? I have had DBS and I no longer respond to the sinemet. I see the stories about people who decide that they will do the impossible and learn to walk again when they have MS or an injury etc. But is this possible with Parkinson's? My daughter is getting married in the summer and I would like to be able to walk her down the aisle. It requires an enormous amount of thought and energy to walk even across the room in my house. I freeze all the time when I try to walk. But the most irritating thing is that If anyone is watching me or waiting for me, then I can't walk at all. I am stuck in place. I can't ask everyone at the wedding to look away when I am walking!! Is it possible to learn to walk again?
  3. Hi Suzymd, When I read your post, it almost sounded like I wrote it, because it sounds very similar to my story with PD and DBS. Right down to the gait and knee surgery. The exception being that I did not have the GPI surgery, but the STN. For the first 2 years after the DBS, I was amazed at how well I could walk, then for the past year, my walking and freezing has gotten much worse than before surgery. It has made me question whether or not DBS is really the wonder cure that everyone seems to think it is. Some have advised that I see an "experienced " programmer, but i have no idea how to know if they are experienced or not. I had my surgery and treatment done at a major university hospital and have had 5 different people programming me. I am very frustrated by the whole process. I also had the doctors telling me that I looked great but I didnt feel great at all. Are they comparing us to patients that are much worse or are they comparing us to the way we were before surgery?
  4. siak

    no control over legs

    I had DBS 2 years ago and it really improved my walking. I didnt look or feel like I had Parkinsons Disease for about 1 1/2 years. Now in the past 2 months, my walking has gotten worse. It is worse than it was before the surgery. My left leg will take a normal step, but my right leg does what ever it wants, which is usually side ways or backwards. Needless to say, this is very upsetting and exhausting and I cannot move around without feeling like I am going to fall. Please tell me what is happening and if there is any treatment. Would a leg brace help? Should the right side of my brain be set differently than the left?
  5. siak

    DBS Update - 8 years

    KimAgain, I am so happy to see you back on the forum. I was wondering if you were ok. You have always had such good observations and writings about the DBS. I had put a plea out to people who had the surgery more that 5 years ago to tell me their experience. I got only a few people who answered me and I was very worried that possibly the ones who had the surgery more than 5 years were not doing well. My experience has been less than satisfying. The fatigue, depression, change in personality were the things that bothered me the most. The surgery had allowed me to walk normally for almost 2 years, but now I am freezing again and falling a lot because I cant pick my feet up off the floor and the top of my body goes ahead of my legs. I have never had a Medtronic rep. In fact, I thought that the rep was supposed to talk to me after surgery but there wasnt anyone there. Thanks again for taking the time to write about your experience.
  6. siak

    Med's the day after DBS?

    Not to be a "half empty glass" person---But I read this conversation with great interest because it seems to me that there isnt much agreement between dbs centers or surgeons when it comes to the surgery. You are also right about not having much choice in the matter. When I did research before my dbs and asked my doc about the asleep/awake and all the other ways of doing the surgery, he told me that I could go somewhere else if I didnt want it the way he does the surgery. The same goes for the programming and aftercare. Every center seems to have a different way of doing things. I also wonder if many long term studies have been done on post dbs patients. I know that none is being done at my center and when I go online, I cant find much either.
  7. thanks linda, I didnt know the woman that you spoke of. I hope that if those who you mentioned read this they will respond. thanks . I hope you are doing well.
  8. Mireille, thanks so much for your input. I was very surprised and disappointed that I only got one response in a week. That tells me that there are not many people around that have had long term experience with DBS. Besides yourself, do you know others with long term DBS? It is kind of frightening to me that it seems there is no good data on how the DBS effects people past 5 years. (At least I have had trouble finding any.) It is encouraging that you are still happy with your results. Do you know where I could get more info on those who have had the surgery more than 5 yrs? thanks
  9. Has anyone had the DBS surgery more than 5 or 10 years? I am wondering how you are doing now. How often do you go for programming? Has your PD gotten worse over time and does turning up the simulation help? I had my DBS 2 years ago and it solved my freezing for a while. Recently, it has started coming back and i am losing my ability to walk again. I would like to know the experience of long term DBS people .
  10. Several times I have asked a question of Dr. Okun in the "ask the doc" forum. However , i never know when or if I am answered since there is a delay. How can I find the answer to my question ? Is there a way to be notified that I have an answer? thanks
  11. siak

    DBS and RLS

    Dr, I have had trouble with my whole body feeling restless (not just legs) when I try to sleep , since my DBS. Is there anything I can do or take to help me sleep? I am not on Mirapex anymore and only on Carbid/Levo . thanks
  12. siak

    Sleepless in Seattle

    As you can see from the time (4am) , I have been up all night. I feel like a 3rd shift worker. For the past month, I have not been able to sleep until about 5am. I try and go to bed about 11:30 pm, but just toss and turn and end up getting up because I am so restless. If anyone else has had success with sleeping at night (peacefully), what have you tried? I have tried all the things that I have read --- melatonin, camomile tea, warm milk, white noise , music and nature sounds, pain meds, taking sinemet before bed, not taking sinemet before bed, etc etc etc. exercising at different time s of the day, not eating after 9pm, no caffeine or chocolate. I am desperate for a normal sleep pattern!!
  13. siak

    Hyperactive after DBS

    This is all so confusing and frustrating! I have the opposite problem. After my surgery, I have become very introverted and rarely go out any more. I never feel good and i am always weak and tired. I feel so insecure about talking and social situations and avoid them. I feel that I cannot express myself when talking and forget what I am talking about. I have no motivation to do anything anymore. I definitely feel like I am not the same person anymore. I cant even get the motivation to call the doc and make appointments. The only time i have energy is when I try to go to sleep. I toss and turn until about 5 am .
  14. Thank you, once again for your help and concern, Mirielle and Linda, and others who have taken the time to help me. My MDS agreed to see me even though he told me that the DBS team is supposed to treat me. He is a very caring doc and answers calls and emails personally and quickly. But like all good docs, he has a backup of patients and it is very long wait to see him. I will let you know how things are going ==I don't want people to worry about me. We all have our challenges in life. Thanks for asking Noah about how she handles things in her situation. I look forward to hearing from any one who has faced this problem and what they did to cope.
  15. Thank you Linda and Mireilli, for your input and concern. I have tried to get help from the surgical team, but something is going on there and I am not sure what it is. They might be having personnel problems or ego problems. Right after the surgery, I felt like I was caught in a "catch 22" situation. My MDS said that he couldn't help me after surgery because the surgery team was supposed to take over. My primary care doc said he didn't know what to do with me because he wasn't the "expert". The so-called DBS programming "expert" wouldn't or couldn't see me more than once and then I was seen by a string of different people never the same. The next doc left and then there was only the residents. The nurse and PA were great, but I couldn't get in to them for a while. The social worker accused me of imagining things and cancelling appointments --( it was winter and many days I had to cancel for the weather and I lived more than an hour away.) So I was left with no one to help that took me seriously. I was referred to the depression clinic-- they didn't call for several months to make a appointment for me. When they finally called, the person on the phone asked me a lot of questions and then said that there were no openings for 6 months and I would have to call back because they don't make appointments that far in advance. When I made the comment that a person who needed help might not be around in 6 months, she very rudely said, " if you feel that way, you should go to the Emergency Room." So here I am. I really would like to go to another Parkinsons center, but the choices are limited and all more than 2 hours away. I really am doing a little better, but as I said before, I feel that I don't know my purpose in life now. I lost my job, which I loved, and my children are away at college. So every reason that I had for looking forward to getting up in the morning has gone away. Thanks again for your kindness and concern. I do know that I can rely on people like you to encourage me. I don't want to cause any one else to feel upset or worried.