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Found 53 results

  1. Decided to blog my journey with DBS, if anyone wants to follow along. Scottsuf.blogspot.com
  2. I just received news that I passed my DBS Neuropsychological screening exams. At least I know my brain still works pretty good! Now, I get to wait to see what the next step is.
  3. Hello all, Have any of you with DBS had other surgeries? My wife broke her ankle and is having surgery. Of course she is 400 miles away and with this snowstorm there is no way I can be there. What has been your experience? Coach T
  4. I am planning a DBS in January and I am scheduled with my surgeon, so Medtronic gave me a call to meet with me and my wife. I wasn't sure what to expect, but me and my wife got a lot out of the casual meeting at Starbucks. The man was very thorough and was able to go all the technical parts of the surgery. I am glad everything was upfront and very honest. It seemed more simple when the neurosurgeon explained it, but he was more interested in what I needed, now I know why. I didn't know that the surgeon had a choice of GPI or STN based on what works best for your symptoms, but GPI is preferred. STN has a potential side effect that agonists have and that is concerning since I don't deal with agonists well. I am wondering if I can find out beforehand what he wants to do based on my history and symptoms. They want to put a non-rechargeable battery in and I think that's good news since my SCS is already implanted with a rechargeable and taking rechargers on trips or remembering to charge every week can be a hassle after a while (but still worth it). I also heard that Medtronic is about to release a major update to their DBS controllers that give them more options/abilities for treatment. This is in the next 1-2 years. So, when I get a battery replaced in 3-5 years, I will be getting upgraded; which is nice. Has anyone followed this Medtronic upgrade or know much about it?
  5. The 10 Breakthrough Therapies and Treatments to Watch in Parkinson’s Disease A breakthrough is defined as a sudden increase in knowledge, improvement in technique, or fundamental advancement in understanding. Often breakthroughs occur when a formidable obstacle is penetrated. Breakthroughs are heralded as major achievements and they pave the road to meaningful progress in any disease. I have spent my entire professional career focused on Parkinson’s and related diseases. I have been blessed to spend much of my time taking care of patients, and I have evolved to understand the critical need for all those suffering to have access to information on breakthrough therapies. The point that I emphasize with my patients is that breakthrough ideas and therapies in Parkinson’s disease stretch far beyond a single drug or stem cell. There is, in fact, a broader and more exciting picture and portfolio of breakthroughs spanning drug, cell, vaccine, device, genetics, care, and behavior. Patients and families with personal investments in Parkinson’s disease should be informed and updated about all of the potential breakthrough therapies. “Every challenge you encounter in life is a fork in the road. You have the choice to choose which way to go: backward, forward, breakdown or breakthrough.” ― Ifeanyi Enoch Onuoha There are several potential breakthroughs that should be on every patient and family member’s radar screen. Here is a list for patients and families of potential Parkinson breakthroughs to watch http://parkinsonbreakthrough.com: · Disease Modifying Drugs and Biomarkers- these are drugs that may slow Parkinson’s disease progression; also imaging and fluid (e.g. blood, spinal fluid) markers that can track the effects of Parkinson’s drugs are needed and under development · Coffee, Tea, Exercise, Interdisciplinary Teams and Caregivers- there is mounting evidence that these approaches have symptomatic and perhaps even other benefits in Parkinson’s disease · Extended Release/Novel Delivery Systems for Parkinson’s Disease Drug and When to Start Drug Therapy- Parkinson’s disease desperately needs longer acting drugs to reduce the “number of pills” burden · Marijuana and Synthetic Cannabinoids- surprising to some experts has been the revelation that there are cannabinoid receptors in the brain and tickling them may be beneficial to some Parkinson’s disease symptoms · New Drugs for Hallucinations, Sleep, Constipation and Dizziness- these problems are vexing for patients and caregivers, but several new drugs are poised to make a difference · Therapies While Hospitalized and Avoiding Hospitalization- we now know that the hospitalization risk is very high in Parkinson’s disease, and that hospitals can be dangerous places for patients; the focus needs to shift toward avoiding hospitalizations · Advancing Deep Brain Stimulation Technology, Earlier Intervention and Dopamine Pumps- the technology has been refining our approach to the symptomatic management of Parkinson’s disease and new therapies are now reaching the bedside · Stem Cells and Stem Cell Tourism- there has been a shift away from the idea that stem cell transplants will cure Parkinson’s disease, however stem cells are proving powerful in drug screening · Prions, Spreading Proteins, Vaccines and Growth Factors- several novel approaches are in trial, and a Parkinson’s vaccine may be on the horizon · The Drug Development Pipeline- understanding the drug development pipeline will help patients and families to gain access to the newest Parkinson’s disease therapies Check out the new book 10 Breakthrough Therapies in Parkinson's Disease at www.amazon.com http://www.amazon.com/10-Breakthrough-Therapies-Parkinsons-Disease/dp/0692497412/ref=sr_1_1?ie=UTF8&qid=1443354908&sr=8-1&keywords=parkinson%27s+disease+and+okun
  6. What should/can I do in this situation? I was approved for the DBS procedure by my primary insurance (a large national company), however they denied inpatient status for the 2nd phase surgery. My secondary insurance,Tricare covers DBS when it's for chronic pain, and they have it as an inpatient status, however when they are a secondary they use the guidelines set by the primary. I'd like to see if the working group that creates insurance guidelines would like to undergo surgery for 3+ hours having holes drilled in their head and leads inserted in their brain and then ride 3+ hours back to home? I sorta doubt it! Do I have any options?
  7. I've been approved by my primary insurance for DBS. However, they have denied inpatient status for the second surgery. The first and third surgery is outpatient and there is agreement between Vandy and my primary insurance.They are saying this invention is considered to be an ambulatory procedure and can be performed in an outpatient status! I'm putting up an appeal and I need some help from this wonderful group. I'm just trying to get some data to help my case. How many of you have had the DBS procedure ( drilling holes and lead insertion) in outpatient status? I don't know of a hospital that will entertain doing it in outpatient status. Appreciate your help.
  8. Hello all, A neighbor to my parents called about her son who had DBS on Monday. He is not able to walk and is still in the hospital. His voice is very soft. What has been everyone's experience immediately after the surgery? My DW went home the next day, but as the doctors said, she had the optimum outcome. He is around 60 if I recall correctly.
  9. I had DBS (STN bilateral) in April 2014. It worked great for my tremors, including my internal tremor. However, my walking and balance is terrible, I did not have this problem before my surgery. I am battling freezing up a lot and have had many falls. I never fell even once before my surgery. They have tried shutting off the stimulator and the freezing would stop. My neurologist kept saying we had to find the right setting. She then referred me to an associate, who also could not help me. I am now on my third neurologist/programmer. He says he has seen this before and does not seem very hopeful. We have tried may setting including low frequency, cycling and adding different meds (ritalin, selegeline, azilect, requip). Currently on 2 sinemet 25/100 4 x's a day, 1 CR at bedtime and amantadine 3x's a day. New settings will work for awhile, even for a month or a little longer, and then I go back to freezing up again. When it is working I feel great, even forget I have parkinson's. None of the doctors have an answer for why this happens. I was wondering if you knew why or had any suggestions.
  10. I'm a 64 y old male, diagnosed in '04. I had unilateral (right hemisphere) DBS (STN) in sept '15, with the second side scheduled 3 months hence. Within days of surgery, I noted my left leg and foot developed a mind of its own. It was suddenly very dyskinetic, and it wasn't at all before. My left arm was much improved (from its bradykenisia) but my left leg seems to have paid the price. The programmer couldn't affect the leg but did help arm and hand. I was told it might " just go away in time". At first the surgeon denied the surgery could cause this, and blamed bad med doses. I did some Online research and learned about 'brittle dyskinesia'... Forwarded the link to surgeon. The thing is, it's gotten a lot worse, the left leg, and causes severe, out of control dyskinesia in the whole left side of body. (It's almost like my left side is possessed, crazy I know) When it kicks in, I can't stop it. My walk gets very loopy and dangerous. I'm told by many I need to finish the job and do DBS in other (left) hemisphere. I'm frightened that this could cause the same problem on other side of body rendering me a useless trembling blob of flesh. I asked if they could do other side in GPI, but they were skeptical. Not sure what to do? Other side? Redo both sides in GPI? Give up? Not even sure who to consult on this as it seems a pretty rare occurrence. Advice? Suggestions? HELP??? Do second surgery? Start over?
  11. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING. The freezing tendency was reduced tremendously instantly. Due to me embedding the habit for so long the LSVT is still necessary, especially at night when I'm off meds for 12 hours, 6 to 6. But the other thing that is blowing my mind is I feel more "settled". It's like there's a subtil stimulation that was happening inside of me that has settled down. It's fascinating how you read someone else's post, and can't at all relate...yet. For example, early in PD (diagnosed 13 years ago now) when someone would talk about "on/off" I had no idea what they meant. Oh boy, did I ever come to understand later! "Freezing" was also something I couldn't imagine. Now I do. The PD journey continues. Thanks to all of you who's posts have been so valuable to me as we all continue to learn together and do the best we can with what we've been given. Obviously, we are all very unique. I wanted to post this in the rare case that there's someone else out there dealing with the same challenge that this may also help. And, thanks for people in the medical field who are not only knowledgeable, but also humble enough to partner with us. My programmer at Cleveland could have resented my input if she had a big ego. She said she was considering going there (lower herz settings) anyway, and I believe her.
  12. Hello Dr. Okun, I have been taking clonazepam and ambien for the past 10 years, as well as my PD medication. My symptoms are currently well controlled. 1. In the future, if I want to have DBS done, can I still get it done, even though I've been taking clonazepam and ambien for the past 10 years?. 2. In order to have DBS done, will I need to stop taking the clonazepam and ambien--1. right before the surgery? 2. will I have to stop taking them forever if I get DBS? thank you for your answer.
  13. Dear Dr. Okum I had DBS surgery done last June. I have noticed a change in my respiratory pattern in the last couple of months. I find myself with shallow, panting like respirations both at rest and when active. It was noticed by my MDS who referred me to my GP and said there is no correlation with the surgery. It is intermittent. I'm just wondering if you have ever seen this. Thanks, Micki
  14. I had my DBS surgery done last June. I have noticed that my breathing pattern has been altered in the last few months. I seem to be having rapid shallow breathing like panting even at rest. It is not continuous but comes and goes. My MDS noticed it as well as the mammogram tech. Have any of you who have had the surgery noticed this? My MDS said there was no correlation to DBS and encouraged me to see my GP. Thanks! Micki
  15. I am a 68 yo male in good health with the exception of PD. My diagnosis was in June, 2014. I am on a Dopamine Agonist and MAO-B Inhibitor only. Last evening I was sent a questionnaire by MJFF regarding my level of interest in participating in a Vanderbilt Research Project intended to determine if early after diagnosis, DBS is effective in slowing the disease progression among other things. My interest level is high. However, my question is what is the possible downside of participating other than the normal risks associated with DBS? BTW, last year I was at the White House when Dr. Okun received his award. I have read both books and have the last on audio as well as in print.
  16. Dr. Okun, Had surgery 12/9/15 to address my top 2 symptoms on right side-hand tremor and leg lift-sporadic (diagnosed as dyskensia or dystonia-lower leg muscles tighten, foot turns inward, toes curl, and leg lifts and plants akwardly when walking).My doctor said my left side showed progression and disease would move to the left eventually-not experiencing any symptoms currently. My first programming session ( 1/1416) was confusing. The dr found the setting to completely calm my hand, My leg was not displaying the lift during the session, The dr then proceeded to turn on the left side and asked if I felt dyskensia spasms, dizziness, tingling, etc. I did. Then she turned the left off and I continued to feel the same symptoms on and off during the visit. She sent me home with the left off and right on at a low setting since she didn't want to send me home (5 hour drive) with dyskensia side effects on the left, Now that I am home the hand has a slight tremor (much stronger when not medicated) and leg left is much worse then prior to the dr visit. I am not experiencing any significant dyskensia. Is it common to turn on stimulation on a side not exhibiting symptoms? And does it seem like my leg dystonia is treatable with DBS? My meds are 37.5/100 (Stalevo) 4x/day and 100mg Amantadine 3x/day. Prior to the visit I was also taking 150mg of Sinimet (which has been discontinued). Suppose to discontinue the Amantadine if dyskensia persists (at this point it is not). I called the next day to see if the right side could be turned up. The dr agreed to increase by .1 volts, Sorry for the long post but I am concerned, Thanks for your help!
  17. I am 60 years old, 6'9", 220 lbs and was diagnosed with Parkinsons in August, 2010. My first visible symptom was a tremor in my right thumb in 2006. Today my main symptom is my tremor which can be seen at: I currently take 2 tablets of 25/100 Carb/Levodopa every 2 and one half hours starting at 6am with my last dose at 6:30pm. I take an extended release 50/200 when I go to bed. I also take 2mg Ropinirole three times per day. When I wake up at 6am I walk with a shuffle and feel in a daze,a little stiff, and my hand tremors. This can last from 30 to 60 minutes, then I feel good with no visible symptoms. I eat breakfast then. Most mornings I have a period of tremoring as seen on the video for about 15 minutes and can be as long as an hour. The same thing happens later in the afternoon. At around 9pm I feel like I am in a daze and will tremor again. My arm feels stiff and I feel in a daze again. If I wake in the middle of the night, my hand will tremor. I was told by a movement disorder specialist in September, 2014 that I needed to have DBS within six months, but I felt that I was responding well to the medications (9 tablets per day then) so why the urgency to have risky brain surgery. My Parkinsons has progressed. I have increased my meds and taking 13 tablets carb/levo per day plus the extended release. I do not have any dyskinesias. I have been told that the recommend max dosage per day is 1200mg, but perhaps I can tolerate more because of my size. Should I increase meds and hold off on brain surgery in hope of some less invasive treatment? I have read about the ultrasonic treatment, but that does kill cells. Perhaps another drug like Rytary? Sorry for the long post. Any comments would be appreciated. Thanks.
  18. DBS battery replacement under a local anesthesia. (Where you are awake while surgery is going on.) : Is this typical or prevalent?
  19. Last October I posted about a problem I had with severe freezing of gait. It started with pain in my lower back from a pinched nerve. Allowing it to go on for months was a mistake. Eventually "traction" at the local hospital physical therapy clinic has stopped the pain and I maintain relief with an inversion table. But...once the freezing habit was embedded in my mind I couldn't let go of it. Tight, narrow places to walk were the most difficult. DBS in 2011 and again in early 2014 (second side) have blessed me with incredible results. 25 down to 5 meds per day, for example. When I turn one of the stimulators off, now in less than 1 minute I can't move the fingers on one hand at all. So, I went to my programmer at Cleveland Clinic, and then to the University of Toledo Medical Center to see if a programming change would help with the freezing. After 3 different sessions I was beginning to believe that DBS simply couldn't help with a freezing problem. In fact, I read online where in some cases DBS could sooner help induce or support freezing. At that point someone on this forum (PatriotM) helped greatly by mentioning David Zid (author of the Delay the Disease program). A one hour session with David in Columbus worked miracles for me...for 2-3 days. Then the effectiveness faded. I was convinced that David's therapy worked, but I needed more of it, for a longer time period. (Signed up for LSVT, or the BIG therapy. Just finishing my first week, I'm confident this is going to take care of the "embedded memory" problem.) Then, online I read an article that was titled "Adjusting Deep Brain Stimulation Can Ease Swallowing and Freezing of Gait in Parkinson’s". My stimulators had been set a 130 herz (like the article said) since the beginning. I sent the article to my programmer at Cleveland and made an appointment. A couple of days ago she changed the herz settings on both stimulators from 130 to 100. The results are SIMPLY AMAZING.
  20. I just finished a novel by Michael Palmer, published this year, entitled "Trauma". A little far fetched, but the protagonist is a neurosurgeon who does DBS to treat PTSD in veterans of military service. I found the descriptions of the procedure interesting, and remarkably well-researched. I think it is a worthwhile read, especially if you like medical thrillers. Let me know what you think!
  21. Hi everyone, posting here on behalf of The Parkinson Alliance. We have survey reports availble on various topics related to Parkinson's disease -- including Exercise, Sleep, Falls, Resilience, Speech, and more. You are welcome to visit www.DBS4PD.org and read our reports. We're also looking for survey participants - our current survey is on Nutrition and can be taken online at www.dbs4pd.org. These surveys are for anyone who has Parkinson's, as well as for anyone who has had DBS - and those who have not had DBS. Please call us if you have any questions at (800) 579-8440.
  22. The Breakthrough Therapies for Parkinson’s Disease Every Patient and Caregiver Should Know About Paperback and Kindle Versions Available at Amazon.com http://www.amazon.com/10-Breakthrough-Therapies-Parkinsons-Disease/dp/0692497412/ref=sr_1_40?ie=UTF8&qid=1441071806&sr=8-40&keywords=parkinson%27s+disease Ifeanyi Enoch Onuoha said, “every challenge you encounter in life is a fork in the road. You have the choice to choose which way to go: backward, forward, breakdown or breakthrough.” Since the publication of Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease, the most common question we have received from patients is what are and what will be the next breakthrough therapies for Parkinson’s disease. A breakthrough is defined as a sudden increase in knowledge, improvement in technique, or fundamental advancement in understanding. Often breakthroughs occur when a formidable obstacle is penetrated. Breakthroughs are heralded as major achievements and they pave the road to meaningful progress in any disease. I have spent my entire professional career focused on Parkinson’s and related diseases. I have been blessed to spend much of my time taking care of patients, and I have evolved to understand the critical need for all those suffering to have access to information on breakthrough therapies. The point that I emphasize with my patients is that breakthrough ideas and therapies in Parkinson’s disease stretch far beyond a single drug or stem cell. There is, in fact, a broader and more exciting picture and portfolio of breakthroughs spanning drug, cell, vaccine, device, genetics, care, and behavior. Patients and families with personal investments in Parkinson’s disease should be informed and updated about all of the potential breakthrough therapies. So, “what will be the next breakthrough therapy?” Because of the complexity of the disease, each person possesses a different combination of bothersome symptoms. This complexity means that the answer to the next breakthrough therapy will vary patient to patient, and it could be a breakthrough in care as well as possibly a new device or drug. We have at the National Parkinson Foundation been monitoring the breakthroughs in the field. We run the free international Ask the Doctor web-based forum, and the questions posted have helped us to keep an accurate pulse on the field. Additionally, our blog called “What’s Hot in Parkinson’s Disease” as well as guest columns as the associate editor for the New England Journal of Medicine’s Journal Watch have provided the material, insight and inspiration for a new book; 10 Breakthrough Therapies in Parkinson’s Disease. Collectively, these experiences have provided focus for the topics in this book and in some cases the actual physical material. Several chapters include topics I have covered before, and in these cases I have added and updated information. The current book is an effort to provide a comprehensive review of the most important breakthrough therapies for Parkinson’s disease. Interestingly, these topics overlap with the most asked questions by patients and caregivers. The unexpected runaway success of my first book, “Parkinson’s Treatment: 10 Secrets to a Happier Life,” has provided hundreds of messages and an ocean of feedback from patients, families and researchers. The majority of comments I received on the first book were focused on the need to understand breakthrough therapies and approaches. My desire is that this book will fill a knowledge gap and will provide hope and valuable knowledge to those in the Parkinson’s disease community. Here are some of the topics that will be covered in the 10 Breakthrough Therapies for Parkinson’s Disease book released September 1, 2015: · Disease Modifying Drugs and Biomarkers · Coffee, Tea, Exercise, Interdisciplinary Teams and Caregivers · Extended Release/Novel Delivery Systems for Parkinson’s Disease Drug and When to Start Drug Therapy · Marijuana and Synthetic Cannabinoids · New Drugs for Hallucinations, Sleep, Constipation and Dizziness · Therapies While Hospitalized and Avoiding Hospitalization · Advancing Deep Brain Stimulation Technology, Earlier Intervention and Dopamine Pumps · Stem Cells and Stem Cell Tourism · Prions, Spreading Proteins, Vaccines and Growth Factors · The Drug Development Pipeline
  23. Hola, Para todos aquellos pacientes que estén siendo tratados con Estimulación Cerebral Profunda o DBS, les recomiendo una aplicación que pueden descargar desde su teléfono celular o Ipad para ayudarles a estimar la vida restante de su batería de DBS. Con esta estimación, es posible planear un recambio de batería evitando complicaciones. Aquí el link de la pagína... https://itunes.apple.com/us/app/dbs-battery-est/id589868010?mt=8 Saludos, DMR @drdanielmtz
  24. Has anyone else has their partner with PD have a stroke following the surgery? My husband just has his dbs and is now in ICU totally sedated and on a ventilator. They are doing this to keep him quiet so he doesn't star bleeding again but there is no way to assess how he is. Anyone out there have any experience to share? It is so scary and sad. Two days ago he walked in here joking and now doesn't even open his eyes
  25. What is the prognosis for a hemoragic stroke on one side following the insertion of the lead?