Parkinson’s and the neuromuscular connection

Fondazione Hilarescere, centre for vascular disease

By Destiny Marquez,

It is ironic that Bentley, a mystery suspense author and retired forester, would become the central character in his own medical mystery that would take us around the world and over six years to discover that what had almost killed him could save his life.

May 2004, with each beat of his heart, Bentley Lyon’s life changed further and forever as the neurosurgeon cut into his brain during the placement of the stimulator in his brain, a procedure to treat his Parkinson’s called Deep Brain Stimulation (DBS). A NCAA wrestling champion (1952 UC Berkley), marathoner and lifetime athlete in the best of health, it was unthinkable that he could suffer a hemorrhagic stroke. Almost quadriplegic, he fought for months to regain the use of his right side and continues to fight for recovery and a cure from both Parkinson’s and left side paralysis today.

After the fact, the surgeon and the anesthesiologist disagreed on when the stroke occurred. The surgeon said Bentley was ischemic, but why would they perform an elective surgery on someone who had greater than normal odds of stroke or death.

Researching Pubmed we found that most DBS strokes are caused by multiple placements or a misplacement of the lead. Some bleeding during this surgery is par for the course, but it is usually absorbed back into the brain with no negative lasting effects. Whatever the cause—bleeding, a mistake—Bentley’s was in for the fight of his life. And so were we.

Two days after surgery while still in Intensive Care, Bentley began to respond to the Dixieland Jazz music that we played for him day and night as we prayed for any sign of his recovery. One of the first casualties of his PD was giving up playing the banjo as the tremor in his right hand grew and became uncontrollable. When we realized he was tapping in time to the music, we knew he wanted to live and in that moment we came together as a family to fight for his life.

When you tell a physical therapist or doctor that your loved one has Parkinson’s and has had a stroke, they are kind and helpful, but they know the statistics are not in your favor. Bentley survived the ICU and Brain Trauma units, a nursing home and a second hospitalization with us by his side 24 hours a day.
Finally though with no previous medical training, we brought him home, believing that somehow we could put the pieces back together and heal Bentley.

Throughout the summer, we followed the advice of all the doctors, specialists, in home therapists and caregivers as Bentley struggled to regain the use of his right side, speech and swallow. He was fed through a tube in his stomach day and night until he was finally able to take that first swallow with the help of his therapist. We were incredibly grateful for their help as we came out of shock and began to understand what we were up against.

October 2004, Bentley’s Parkinson’s continued to progress even though we were attacking it with all the standard forms of neurological treatment. He had survived the stroke but it seemed like he was going to die from additional Parkinson’s complications. Every day Bentley’s breathing became more labored because Parkinson’s was freezing the muscles in his chest. His neurologist did not seem to have any answers and suggested that this is what happened with Parkinson’s. He tiredly looked at us as one more family that was in denial, almost angry that we would not accept his council. We couldn’t believe that there were no other options and knew that if we were going to save his life we would have to find our own answers.

Our first step was deciding to take the advice of a friend who was using a drug called Low Dose Naltrexone, LDN for multiple sclerosis. She’d discovered it on the Internet and told us to read the website and talk with the doctor who was prescribing it off label. We spoke with Dr. Bernard Bihari of New York who had first used LDN to treat humans and Dr.Ian Zagon, the head of research at Penn State and the discoverer of the amazing effect of naltrexone in low dose form, who had spent almost 30 years researching this drug. When we added it to Bentley’s meds, the effect was almost miraculous. Within four days the muscle tension in his body dissipated and his breathing returned to normal. Over the next 8 months we were able to lower his Parkinson’s medications by over 60%. As each day passed we became more secure about our discovery giving us hope that we might be on the right track to beating this disease.

August 2005, Bentley’s stroke symptoms were getting worse and he was slowly declining. When we asked his specialists what his options were they told us more medications and interventions that would eventually, inevitably, lead to surgeries that would guarantee that he could never walk or have use of his arm again. By the time we finished these conversations we understood again that we were all alone and that we would have to find our own way because Bentley’s survival depended on us.

This time, our first step was to go on the internet to search for a possible solution. We found a neurologist, Dr. David Perlmutter and Dr. Paul Harch, a physician and researcher specializing in hyperbaric oxygen who discussed the many new options for treatment including hyperbaric oxygen therapy (HBOT). We decided that this was our next best step in fighting the stroke. After the first treatment, Bentley was happier and more relaxed than he had been in months. After five weeks of treatment his thinking was clearer and his mood was better, he could eat without choking and the dermatitis and skin issues that often accompany PD and paralysis began to clear up. Bentley began to look and sound more like the man we remembered.

After six years of networking around the world with cutting edge doctors, researchers, advocates, internet support groups seeking the best tools and information available, we began comparing notes with a small group of friends with PD, each of us using a different alternative method of care to stop or slow down the progression of Parkinson’s. The only conclusion we could come to was that each method that showed promise somehow increased circulation to the brain. This seemed to be supported by our own experiences and reports from Cleveland Clinic about Forced Exercise and improvement in motor function which demonstrated a 35% increase in symptom relief with no disease progression.

Just before Thanksgiving, a friend of ours, Sammy Jo who has multiple sclerosis, informed us that she had undergone a surgical procedure for a condition called CCSVI or chronic cerebrospinal venous insufficiency based on an Italian doctor’s theory that restricted blood flow to the brain somehow causes many of the neurological problems that were the basis of her disease. His name is Dr. Zamboni and his studies had shown that there might be a possible vascular surgical solution for MS. Our friend found additional research on another surgery available for Parkinson’s patients and other neurological conditions including Alzheimer’s and epilepsy. This surgery was discovered by a Puerto Rican doctor, Dr. Fernandez Noda. He had performed a Thoracic outlet syndrome surgery (TOS) on a Parkinson’s patient and incredibly his Parkinson’s symptoms got better. Dr. Noda and his associates performed thousands of surgeries for many different neurological conditions now called Cerebellar Thoracic Outlet Syndrome or CTOS He believed that there was a compression problem in the arteries causing hypoxia and that once this was resolved the patient’s brain could heal itself. Both Dr. Zamboni and Dr. Noda had demonstrated that neurological disease might not actually be a disease but rather a response to a vascular problem.

We had always wondered if Bentley’s neck injury from college wrestling might have contributed to his Parkinson’s. In his mid forties he started having gran mal seizures which could not be explained. During his final seizure he slammed his head so hard as he fell that he broke the plaster board on the wall of his home, shortly thereafter his Parkinson’s symptoms began. He never had another seizure. We asked other Parkinson’s patients online if any of them had ever had a head, neck or shoulder injury or pain. Their responses read like an accident report, jet plane crash, motorcycle crash, thrown through a windshield, fell from a tree, kicked by a cow. We also heard from people who were athletes and musicians who through repetitive motion had developed neck pain prior to Parkinson’s. We read studies that showed that this could be caused by a genetic defect in the veins or arteries, bone, scar tissue or muscle pressure restricting blood flow in or out of the brain. So now the question was with so many possible ways to limit blood flow why do some people get PD and others MS? What determines which neurological condition one might end up with?

Dr. Alexander Rauscher, “a physicist and research associate at the UBC MRI Research Centre, who has developed and validated a new imaging technique that is extremely sensitive to iron, more accurate at assessing iron content, and yielding better and sharper images of the brain and veins than can be obtained with conventional MRI scans. This new technique is called susceptibility weighted imaging (SWI) with multiple echoes. Excessive iron in the brain has been linked to the death of dopamine-producing brain cells in Parkinson’s disease. With his multi echo SWI method, Rauscher has already found a good correlation between overall iron content in the substantia nigra, which is the area of the brain affected in Parkinson’s disease, and disease severity, as measured by the Unified Parkinson’s Disease Rating Scale (UPDRS)”. This amazing view into the brain gives us more evidence of the vascular nature of these diseases and demonstrates the possible link between the best known neuro conditions of Parkinson’s, Alzheimer’s and multiple sclerosis.

What made the medical industry pursue neuropharmacology and electric stimulation without also considering looking at the vascular option. If we could understand how our circulation affects our brains functioning then maybe we could either develop better surgical or therapeutic solutions that might help us manage or cure the great array of neurological conditions. Imagine a world where when you felt that first tremor the doctor instead of offering you a pill and a downward slide, could give you hope for a cure. We wondered, could there really be a vascular solution for neurological illnesses?

February 2010, we sat in the office of a local vascular surgeon in Medford, Oregon asking him if a compression problem could have been the cause of Bentley’s stroke during DBS. He said, “It was possible”. We asked a vascular surgeon in Madrid who is now performing surgeries for CTOS if he thought this compression problem may have been the reason for Bentley’s stroke and he said, “It was very possible”.

Destiny Marquez

For the first time in years we’re not afraid and have real hope that Bentley’s Parkinson’s can be managed and possibly cured. We continuously work on the internet with friends and through an information sharing group on Yahoo called Healing Parkinson’s. As a family we speak with Parkinson’s groups, families, friends and patients trying to create greater awareness and hope. We believe Bentley’s Parkinson’s has stabilized and continue to use LDN, HBOT, BPM, exercise, supplements and good health practices while we investigate new possible treatments such as Upper Cervical Chiropractic and STS Therapy searching for the ultimate combination of therapies and a possible cure. We have a better understanding of why these therapeutic tools are helping us manage Bentley’s symptoms and look forward to him being a candidate for a vascular solution for his condition. We are not alone. There are a growing number of neurological patients and families worldwide who believe that we are on the verge of a paradigm shift in medicine. The barriers of specialization must come down so neurology and the vascular worlds can connect in order to find the safest alternatives to heal all neurological conditions. We believe that what stems from the heart can heal the brain.

Destiny Marquez has been caring for her father who has Parkinson’s for over six years.  She am the moderator for an information sharing group on Yahoo called Healing Parkinson’s
(http://health.groups.yahoo.com/group/healingparkinsons/).