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Aftershock-How to survive an unsuccessful DBS Created by DESTINYELLEN What's Being Discussed Here? Hyperbaric oxygen therapy, Muscle tension, Low Dose Naltrexone, Deep brain stimulation, Oxygen, Physical Therapy, Hbot, study, NOW, Align, Naltrexone, Pain, Align Dear Friends, After reading Linda's note, I have decided to post our story on DBS and recovery. Glenn Beck's video on youtube reminded me of the importance of working towards making our health services better for all. Below is my note to him and a synopsis of our family story. You can see his video at www.glennbeck.com (Beck from the dead is the title) Dear Mr. Beck, It saddened me to see your video and fully understand your concerns and personal suffering. I've included a synopsis of what my family and I have gone through and the positive things we have found to assist us and many other people. We wish you a speedy recovery and join you in your battle for better healthcare for all in America. We also thank you for the many hours of insightful entertainment you give us each week. god bless and thank you, Destiny Aftershock- How to survive an unsuccessful DBS My father, Bentley, suffered a massive hemorraghic stroke during the second lead placement in a double-sided deep brain stimulation (DBS) surgery for Parkinson's on May 14, 2004. Due to the severity of his condition, he never had the second surgery to install the battery packs and turn on the stimulators. Right after Bentley's stroke we realized that if we did not step in, he would die. The hospital staff was overwhelmed and understaffed and hoping for help from family or friends. Bentley's new life now required assistance 24 hours a day. When you tell a physical therapist or doctor that your loved one has Parkinson's and a stroke, they are kind and helpful, but they know the statistics are not on your side. Parkinson's is a progressively debilitating disease that will eventually kill you after years of suffering. Now, add that to being fully paralyzed on one side and all bets are off. Bentley survived the ICU and Brain Trauma units, a nursing home and a second hospitalization with us by his side. After six weeks we brought him home, where everyone would rather be. Healing in a loving, familiar environment was his ticket to recovery and our roller coaster medical education learning curve. He couldn't eat or drink and slept most of the time, but by October he was more awake, had recovered his right side and was eating carefully blended foods. A friend of ours had been asking us to look into a drug called LDN - low dose naltrexone (www.lowdosenaltrexone.org) to treat his Parkinson's. We felt we were on the right course and did not want to try anything that might upset Ben's progress. But then, his breathing began to shudder. This was a new symptom from the muscle tension around his lungs. We feared that we had saved his life from the stroke only to lose him to Parkinson's. We reconsidered LDN since the side effects were minimal and the cost was less than $1.00 a day. Within days, the muscle tension that was affecting his breathing and causing tremendous stiffness and pain, started to dissipate and his breathing returned to normal. Slowly we watched as LDN saved his life and allowed us to lower his PD meds by more than 60%. According to Dr. Zagon, LDN is an opioid antagonist (it blocks opioids from the opioid receptors in your body) that tricks our biological systems into restoring homeostasis (i.e., the body's normal equilibrium). Naltrexone is currently approved by the Food and Drug Administration (FDA) for the treatment of alcoholism and opioid addiction. However, when used at much smaller doses (approximately one tenth of the dose used for the treatment of addiction), it has shown remarkable effects in alleviating pain, muscle tension, and other physically debilitating symptoms that occur with MS, PD, Crohn's, many forms of arthiritis, Lupis and many other diseases. (Dr. Zagon is Professor of Neural and Behavioral Sciences at Pennsylvania State University, Hershey Medical Center) The following year we noticed Bentley's stroke symptoms from the weakening left side were getting worse. We could no longer understand Bentley when he spoke and he nearly choked every time he ate. We tried everything from physical therapy, massage and constant stretching, but nothing seemed to work other than medication. We thought if we had been lucky enough to find LDN for Parkinson's maybe we could find something for stroke. Researching on the internet and many phone calls later we decided that we would try Hyperbaric Oxygen Therapy (HBOT). "According to a recent study published in the American Journal of Physiology-Heart and Circulation Physiology, (http://ajpheart.physiology.org) hyperbaric oxygen treatments increases by 800% the number of stem cells circulating in a patient's body. Stem cells, also called progenitor cells, are important players in repairing the body after injury and in tissue regeneration. Stem cells exist in the bone marrow and are capable of changing their characteristics to become part of many different organs and tissues. When a body part is injured, stem cells are mobilized and provide the cells necessary for the healing process to occur. Hyperbaric oxygen therapy (HBOT) provides an important trigger or stimulus for this mobilization. "This is the safest way clinically to increase stem cell circulation, far safer than any of the pharmaceutical options," said Stephen Thom, MD, Ph.D., Professor of Emergency Medicine at the University of Pennsylvania School of Medicine, lead author of the study. "This study provides information on the fundamental mechanisms for hyperbaric oxygen and offers a new theoretical therapeutic option for mobilizing stem cells... We reproduced the observations from humans in animals in order to identify the mechanism for the hyperbaric oxygen effect." So in addition to increasing blood supply and reducing the damaging effects of free radicals, this is yet another mechanism explaining the effectiveness of hyperbaric oxygen therapy in a variety of brain disorders including head trauma, stroke, multiple sclerosis, hypoxic brain injury, Parkinson's disease, cerebral palsy and vascular dementia. (Perlmutter Health Center) After the first treatment, Bentley seemed happier and more relaxed. After five weeks of treatment, we decided that we had to find a way to provide this life enhancing therapy in Medford. It took one year, but we finally found a hyperbaric tank to use for home therapy and we are now able to manage his tone and spasticity by only using HBOT. One of the leading experts in hyperbaric oxygen therapy, Dr. Paul Harch (www.harchhyperbarics.com) we have been very fortunate to have read his book, The Oxygen Revolution and spoken with him regarding HBOT and its amazing potential. My mother, husband and I have come together to help my dad, so we can continue to have a positive life together. We are living this process with laughter, hard work, tears and lots of love. We have learned that we are each responsible for researching and understanding our own healthcare. Being an active participant is the best way to work with your healthcare team. Our tremendous battle has been blessed with hope for the future and a reasonable life in the present by Bentley's positive response to these amazing understudied therapies. My family and I believe there is great hope for the Parkinson's community. My father and many other folks with PD are living it. this post was last edited by DESTINYELLEN on Jan 05, 2008 03:39PM Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn