THE PONS MACHINE IS POTENTIALLY THE BEST HOPE TO IMPROVE THE QUALITY OF LIFE OF PEOPLE WITH PARKINSON'S AND THEIR CARERS IN 50 YEARS.
IT IS NOT A DRUG, IT IS NON INVASIVE, HAS BEEN TESTED AND RESEARCHED FOR OVER A DOZEN YEARS, INCLUDING EXTENSIVELY BY THE U.S. MILITARY FOR THE LAST FOUR YEARS. IT HAS JUST BEEN ANNOUNCED THEY HAVE EXTENDED THEIR RELATIONSHIP WITH HELIUS FOR FURTHER RESEARCH UNTIL 2021,
THE PONS MACHINE HAS NO SIDE EFFECTS. IT HAS HAD SUCCESSFUL CLINICAL TRIALS FOR MS AND AWAITS CLINICAL TRIALS FOR PARKINSON'S IN THE UK.
REGARDLESS THE DEVICE SHOULD BE AVAILABLE FOR ANYONE TO PURCHASE IN THE FIRST HALF OF 2018. COST EXPECTED TO BE £3-4000.
PARKINSON'S UK WERE FIRST NOTIFIED OF THIS DEVICE IN MAY 2015 AND HAVE BEEN REGULARLY REMINDED. I HAVE BEEN TRYING TO GET THEM TO DO CLINICAL TRIALS SINCE. IN FEBRUARY 2016 MANAGED TO ARRANGE A MEETING BETWEEN PARKINSON'S UK AND THE MANUFACTURERS OF THE DEVICE, BUT NO PROGRESS WAS MADE. IT IS 18 MONTHS SINCE THAT MEETING AND NOW ANOTHER MEETING IS PLANNED. HAD THE TRIALS STARTED IN 2016, BY NOW THEY COULD HAVE BEEN COMPLETED OR WELL ON THEIR WAY!
THE ATTACHED DOCUMENT IS A FULL REPRODUCTION OF A 7 PAGE EXTRACT ABOUT THE PONS MACHINE FROM NORMAN DIOGES BOOK THE BRAIN'S WAY OF HEALING - A BOOK WELL WORTH READING IN IT'S ENTIRETY.
SINCE I READ IT IN 2015, I HAVE MAINTAINED CLOSE CONTACTS WITH THE MANUFACTURERS, HELIUS MEDICAL IN THE U.S.A. I AM OPTIMISTIC THIS CAN CHANGE THE QUALITY OF LIFE FOR THE MAJORITY OF THOSE WITH PARKINSON'S. IT IS NOT A FULL CURE, BUT WILL ALLEVIATE MANY OF THE SYMPTOMS AND REDUCE DEPENDENCE ON BIG PHARMA AND THE MANY UNPLEASANT SIDE EFFECTS OF THE MEDICATIONS PRESCRIBED. PLEASE READ THIS
DOCUMENT IN FULL AND WRITE TO STEVE FORD, CEO OF PARKINSON'S UK AND MARK GOODRIDGE, CHAIRMAN OF TRUSTEES ENCOURAGING THEM TO SPEED UP CLINICAL TRIALS OF THE DEVICE STEVE Ford BETTER STILL ATTEND THE PARKINSON'S AGM IN LONDON ON SATURDAY OCTOBER 14TH AND LOBBY FOR ACTION.
Three Resets: Parkinson's, Stroke Multiple Sclerosis
Extract from "The Brains Way of Healing" by Norman Diodge pages 242-249.
Anna Roschke has had Parkinson's disease for 23 years. She is now 80 years old and got her first symptoms when she was in her late fifties. She was brought to Wisconsin for treatment from Germany, where the doctors had given up on helping her further. She couldn't walk, maintain balance, pour a glass of milk without spilling, or control her tremor. Her speech was slowed, and she couldn’t maintain the flow of conversation. Her son, Victor Roschke, a molecular biologist who develops drugs to fight cancer, said, "She was in bad shape. Her tremor was her worst symptom. The doctors were adjusting her medicines, and the medication was keeping the disease under control to some extent…. But they said at this point there was nothing else they could do about the illness. Basically they had run out of options".
She knew she had done well, for a while, for a person with an early diagnosis of a progressive disease, but still dreamed she might make herself useful by doing small meaningful things, such as baking cookies for her grandchildren. But she has so frozen into immobility of advanced Parkinson's Disease that all she could do most days was to sit in front of the window and look out, or stare at the television.
The team had reason to think this device might help. Brain scans of patients with balance problems had shown, to their surprise, that when patients used the device, the globus pallidus, a part of the brain that becomes hyperactive in Parkinson's disease lit up.
After two weeks on the device Anna recovered her abilities to speak and walk and her tremor diminished. She no longer needed a walker, and "she could walk quite normally", Victor says. "It was the most striking observation. We also noticed there was remarkable improvement in how she spoke. It was our impression that, other than the tremor, she appeared like a normal person". She continued to use the device regularly. When Victor next visited, he learned his eighty year old mother had been found standing on the kitchen table top, painting the ceiling with Hausfrau thoroughness. "It was a horrifying story", he laughs knowing how much his mother loved to be active and useful. Considering how disturbed her balance and movement had been, he says "It was amazing she was able to do it and not fall". During the day she now goes to the park, moves around easily and quickly, and bakes cookies for her grandchildren.
She still has Parkinson's disease yet her functioning has improved so greatly she's not living as though she has the disease. "I was sceptical about the device", Victor says, "because I am a scientist, and I only believe in scientific data. But when I saw the effect for her coordination and condition, I came to believe this technique is wonderful.
Mary Gaines lives in Manhattan. She's an engaging 54 year old, with blond hair, red cheeks and large eyes. In 2007 she was head of a private school where she had worked for 22 years. Am American raised in Europe, she spoke French, Italian, a little German and a bit of Flemish. When she was not even fifty, she had a major stroke, caused by a blood vessel that burst in her brain. It began with a series of "small strokes". First she noticed heaviness in her legs; then she started to see flashing lights. Her partner Paul, drove her to hospital. "I was in the MRI machine at New York-Presbyterian Hospital when I had my big stroke", she says. A classic left hemisphere stroke left her with weakness on her right side and affected her language: "I couldn't speak, write, read, cough, or make any noise. I was mute".
She also developed problems thinking, couldn't filter out unimportant information, experienced sensory overload, and couldn't understand conversations because she was so disturbed by background noise. When the brain is healthy, it automatically helps sort out what information is worth paying attention to. "After my stroke", Mary said, "I had to consciously assess every sound, shadow, almost every smell, to know whether it was dangerous". Her visual processing slowed so much that, as a passenger in a car, she couldn't understand traffic patterns. "I was always playing catch up", she said. Not knowing what was safe and what was dangerous left her nervous system in a constant state of fight-or-flight.
She couldn't perform the simplest movements and gestures, like turning the stove on and off. Simple tasks exhausted her, and she became socially isolated. She began speech rehab every day at Helen Hayes Hospital for her asphasia (loss of speech) and dysarthria (inability to articulate sounds properly). "I would sit and listen to other people talking, and I wouldn't understand or follow what people were saying". After six months' leave, she tried to go back to work but couldn't handle it. "I thought I had to live with this".
Disabled, she laboured four and a half years to get better, but most of her deficits remained. Then she heard about the lab in Madison, where her sister happened to live. In January 2012 she for a two week stint. Like many who have been ill for a long time and who have tried mainstream treatment at esteemed hospitals, she was sceptical.
"Day two at the lab I started feeling a change, and I kept that to myself"", she told me, "because I was feeling, 'I want it to be true, so I am imagining it'. But when I went for lunch on that second ay, it was like a comb had gone through my brain, and I didn't have any tangles any more". Her problems with thinking and sorting out stimuli disappeared. Her flight or fight reaction began to turn off.
Suddenly her peripheral vision was back, and she could do visual processing in real time. "I would tell which traffic was coming and which was going", she said. "On the third day, I had my energy back. And oh my God, I would talk to someone across the table and hear them. I was ecstatic, elated. I had to calm down, because I didn't want anyone to think I was crazy. The device has changed my life.
After two weeks in Madison, she took the device home, using it three to five times a day. By March 2012 she had used the device at home for two months. With only the occasional halting pause she told me
"I know I still have some work to do, but I feel like myself….I think the biggest thing is I can do things with 'flow', and things come second nature to me again. I can enjoy daily activity and just being alive". Before she could barely get through a newspaper and now "I can read anything I want.
Though Mary's recovery has been life changing, it hasn't been complete; and she still gets weekly migraines. She can multi-task again, but not as long as she could before; and she's still not as fast at tasks as she was. At first she thought she would use the Pons as long as the team suggested, but she stopped after six months, when she realised the gains she made were holding without daily practice. "Now I practice yoga, meditate, walk, clean the house, garden and cook with enthusiasm. My greatest delight is my freedom and I enjoy it every second".
Max Kurz, in charge of research in the department of physical therapy at the University of Nebraska Medical Centre, is a scientist with expertise in biomechanics and motor control. He led the first study of the device outside the Madison lab. Yuri, Mitch and Kurt needed to see if other groups could replicate their Madison Lab results in the varied population of MS patients. Kurz's study included people with both relapsing and remitting MS and progressive MS. The 8 subjects came twice a day for two weeks of training at the clinic and were then each given a device to take for the next 12 weeks. Most came in on canes, one on a walker.
"The changes that we saw in the patients were pretty remarkable" said Kurz. "And they were really fast, faster than that we'd normally see in the clinic". All 7 of the patients who had come in on canes were "now able to walk faster, longer, go up and down stairs, not having to hold on to the railing. That was very convincing to us". Not only did people improve in their balance and walking, the also improved in other MS systems, indicating a more general healing process was occurring. "Patients are reporting improved bladder control and an improved ability to sleep", he told me. "Those are things we're not treating but they're changing."
A patient who was confined to a wheelchair became able to transfer from a chair to the bed, roll over in bed, get up on his knees, sit on them and balance himself independently. "These are just things you don't see happening in that type of patient " said Kurz. "One woman had a lot of shaking and arm tremors went away". No medications had been able to help her tremors. "Her walk" Kurz said, "when she came in was uncoordinated. She came with a cane, and she got rid of it. She was able to walk, then run - within a couple of weeks- to jump rope. That's crazy. Here you have balance problems, and with training on the device you are able to jump rope. Some of the things are just unexplainable!"
The woman he spoke of was Kim Kozelichki. She's been able to stop her decline, then radically improve. Kim, an avid athlete and tennis player went to college on a tennis scholarship. MS struck her down when she was 26 years old, when she was working as a manager. The onset was insidious. First, she felt tingling in her feet, which spread to her hands. Then she developed neuropathic pain in her feet, hands, neck and back. Next the MS affected her balance, so that she regularly stumbled into walls, and started dragging her leg when she walked. She developed double and triple vision. When she swung at a ball on the tennis court, she would miss by a foot. She had played the piano but had to give it up. Her head tremors became so bad, she always looked as if she were shaking her head to say no. Her knees started turning in, and she eventually needed a cane; then her husband, Todd, a homicide detective, had to push her in a wheel chair on longer walks. Her fatigue and her inability to think or remember words, or process events in real time were so bad she had to quit work. An MRI scan showed lesions all over her brain and spinal cord.
Kim's nurse-practioner recommended she participate in Dr. Kurz's study. Athletes and musicians often make good patients, because they know about incremental practice. Within a couple of days of using Pons, Kim says, "I was better balanced, not bumping into walls, feeling stronger. I felt normal again - as normal as can be expected with the disease". When she started with the device she could walk 1 mile per hour on the treadmill, clinging to the handrails. After two weeks she was going 2.5 miles an hour. At home with a Pons, she trained for two twenty minute sessions a day, one for balance, and one while walking and doing housework. By the fourth week, she was up to 3.5 miles an hour without using the handrails.. "What freedom!", she says. After 11 weeks, Todd was throwing balls at her on a tennis court so she could swing. "She was zinging those things back at me so fast, "he says," I was ducking to get away".
A year later she now walks without a cane and can play the piano again. She's not all better- her fatigue and cognitive issues persist to the point that she still can't work. But she if much more functional, suffering much less, and has hope. She and Todd are able to go to the movies, go out to eat, take walks and enjoy life together.