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THE PONS MACHINE IS THE BEST HOPE FOR THOSE WITH PARKINSON'S AND THEIR CARERS

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QOL
THE PONS MACHINE IS THE BEST HOPE FOR THOSE WITH PARKINSON'S AND THEIR CARERS

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.

Parkinson's Disease.

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.

Stroke.

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".

Multiple Sclerosis

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.

QOL

PERHAPS? THE MOST IMPORTANT POST FOR YOU EVER TO HAVE APPEARED ON THIS FORUM??!!  PLEASE READ IT.  IT COULD CHANGE YOUR LIFE.

Extract from "The Brains Way of Healing" by Norman Diodge pages 242-249.

Parkinson's Disease.

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.

FOR MORE INFORMATION SEE EARLIER POST ON THE PONS MACHINE ON THIS SITE ON 14th AUGUST 2017

Island Mike

I think your heading for this thread is slightly exaggerated. The best hope? I don't think so. 

This technology has been around since early this decade. The manufacturer has in this time struggled to get any mainstream clinical testing- your quotes from 'successfully' treated patients mean nothing unless the number of patients who found no benefit at all is quoted. 

Why do you think no proper double blind trials on either side of the Atlantic have been performed? 

The reason is the science. There is no scientific reason why this would have any effect in PD. If there were a genuine effect resulting from the treatment alone,  neurologists the world over would be falling over themselves to try it on patients. They aren't. For the same reason a rheumatologist won't recommend using a magnetic wrist band  to help with joint pain. 

I'm sorry, but this is an unscientific scam, inflicted on a credulous and desperate group of people. I for one won't be spending £4k of my not very hard earned pension on this. I might stick the electrodes of a £3 battery on my tongue to see what happens just for fun, but that's about the limit.

benji

A first post by QOL advertising something ........  fishy?!

the Pokermid

Some rise by sin, and some by virtue fall

Pray this black-hearted guy would like our call

To bring his pricey wares and thereby scam us

Unlikely strength and hardy steel within us!!

QOL

Dear Sceptics,

At the foot of this mail is a poem.  You may like to read this first and see whether that tells you I am some kind of scheming fraud.

Contrary to your beliefs this is a genuine product with genuine hope for Parkinson's.  I recommend you look up Helius Medical, in particular their board of directors and you will find many highly qualified and reputable people.  I have no personal interest in whether you buy the machine or don't.   I agree it is a lot of money, but if it works, then it is of no consequence.   If you look at my website www.positiveparkinsons.com and my own site www.peace.co.uk you can evaluate who I am and what I think.  I am not a fool and have lived as a carer for my wife for fifteen years.   Parkinson's UK have yet to achieve one significant step forward as far as my wife is concerned and you and she are dependent on big Pharma selling very expensive drugs with awful side effects.   If this device cost £500 or £100, or £10 would it make it any more credible in your eyes.   Science is wonderful, but remember most thing that proven today and often proven different tomorrow.  

The biggest problem with Parkinson's is closed minds and if you try and widen your perspective you might begin to realise that a cure is likely to come from somewhere other than pharmaceuticals.  I am encouraging Parkinson's UK to do proper clinical trials in this country and instead of being cynical and negative, it would greatly help if you would support that enterprise.  If the clinical trials don't work, then  that would be concerning.  However all the evidence to date points in the opposite direction.  Succesful clinical trials have already been completed on MS and the US military is continuing their research into brain injuries.  I would not recommend a battery and some wires though that is presumably tongue in cheek!    If you want a poem to read try this given to Parkinson's UK in 2014

Not just making any old video!!

Perhaps I am just an optimist,
My expectations rather high,
Uninterested in compromise,
Want no chance to misapply,
I'm reaching for the heavens,
I want to touch the stars,
It maybe seems outrageous
To want us to step so far.

I want us to make a video,
To show those just diagnosed,
Convince them life will be all right,
They'll be a little indisposed.
It needs a single minded message,
One they surely cannot miss,
Their life is not a wreckage,
It can still be a life of bliss.

It is for those who suffer,
And those who can't speak up,
Whose voice is now a stutter,
With arms that shake a cup,
Whose memory is slower,
Their walk unsteady too,
Balance sometimes wobbles,
Tough putting on a shoe.

A shock for all those people
To discover what they've got,
Suddenly their life has changed,
Not just a little, but a lot.
Then they need encouragement,
To see their life goes on,
That quality can be maintained,
Head held high and strong.

And the bringer of the tidings,
Of this sad and bitter views,
Needs help as well in finding
How best to break that news,
They need a way of saying,
It's a beginning not an end,
It means a new way of living,
You need tell all your friends.

They need to be encouraging,
To inspire with help and hope,
To tell them they will be O.K,
Being positive they'll cope,
They need to hear from others,
Who've received that news and won
Courageously have fought the fight,
Continue laughter and the fun.

It needs to be a call to action,
To dance, sing and exercise,
It needs to truly be inspiring,
Stop their fall and help them rise,
It needs that those who use it,
Be so inspired, they use it well,
To help at the point of diagnosis,
A positive story that they tell.

All the research in the universe,
Won't help us understand,
Simply and fundamentally,
They all need a helping hand.
To hear it's just beginning
Yet another phase of life,
Go on living and enjoying
With their husband or their wife.

We already know the message,
The one we surely need to give,
Life remains ever joyful,
Take up it's reins and live,
Don't hide and be withdrawn,
Don't founder, get depressed,
Go on just as you have before,
You can always do your best.

Put yourself as your priority,
Make sure that you come first,
Plant your best foot forward,
Make the best of what is worst,
Laugh in the face of weakness,
Triumph, prove the medics wrong,
Become a life long seeker,
Let everyone hear your song.

Can we jointly make this DVD
That watchers see with joy?
A new world of possibilities
Not just a great dark void,
They aren't being sent to prison
Their life's not going to end,
Positive optimistic messages,
Is what we must plan to send.

Laurie Phillips

6.3.14

Jules77

Dear People,

You may not yet of heard of the wonderful new method I have developed to tackle the problem of degenerative illnesses and ageing. It is called the BC Time Pod.

Basically using two of my latest inventions;  atom charge reversal magnetrons to turn time backwards or speed time up and my latest gravity warp compensators to prevent obliteration I have designed a time travel machine. Adjustment and exact setting of the space time continuum equaliser (also my invention) is achieved by massively complicated algorithms that only my computer power can construct.

With this incredible device I can transport a person with a debilitating disease(s)  in the pod to my clinic based in the year 2475 where they will be met by a team of technicians, who will undertake a full diagnostic check and construct a regeneration programme to suit customer needs.

Transfer time, to the future is fast, within one hour after being strapped inside the pod you will arrive at the time destination. Time at the clinic (where you will not be allowed to leave) will vary between 24 to 48 hours.

Customers will then be returned (compulsory, I’m afraid) to this time zone fully cured of all illnesses and with a biological age of twenty.

Due to the somewhat problematic success rate of my device, there is currently  a small probability  (1 in 3) that customers will be irretrievably lost in a space/time vacuum, so we do ask or a 50% deposit on the modest fee of £14,750. Discount of 20% for over eighties.

Only kidding folks,

Jules777

(Moderator: What are the Forum rules on advertising of products, systems or devices. What is the difference between advertising and informing).

QOL

Dear Jules 777,

I am sorry you feel that all hope is lost and you will never actually see any improvements in Parkinson's Treatment.  

You maybe like your other forum members who responded and don't believe the Pons machine is real or effective.   I posted the information on the website in good faith in the hope that some of you might actually do some serious research and discover for yourselves that there is hope with this machine.  

I cannot say what percentage improvements will be made and that it will work the same for everyone - and yes it is expensive, but it has had forty years of research.  I am not advertising a product as seems to be intimated by the Forum moderator, I am asking for help so that Parkinson's will do the clinical trials everyone needs, to be reassured it is a genuine product with a genuine benefit.  Surely there are some sensible people out there who want to see an improvement in the Quality OF LIFE 

QOL

Island Mike

QOL

You say this machine has had forty years of research. It didn’t take that long to develop MRI scanners from idea to product. And if it has been around for forty years, why has not a single reputable or reproducible trial been carried out in Parkinson’s disease? There is no conspiracy to stop any possible treatment. 

If this machine is so good at transforming quality of life, why not submit the evidence to NICE to see if it could become prescribable? It would save a fortune in drugs. After all, forty years of research must have produced enough evidence for the NICE committee. Shouldn’t it? There is no evidence, is there?

And the people on this forum are sensible, not credulous fools. If you think Parkinson’s UK will fund a trial on this monkey oil, you’ll better have a rethink. Somewhere else, preferably.

Research Parkinson's UK

Hello all

We have had a few queries about the PONS machine from people affected by Parkinson's so thought it would be helpful to share our general response here.

We understand that there are clinical trials of this device underway in people with Multiple Sclerosis and Traumatic Brain Injury, but so far it has not been tested in people with Parkinson's.

Until robust clinical trials are carried out that provide evidence of the effectiveness of this treatment in people with Parkinson's it is not something that we would recommend.

If the company were to carry out high quality and ethically approved trials in the UK we would be happy to help highlight the opportunity to participate and share information on the results with our Research Support Network.

I hope this is helpful.

Claire

Parkinson's UK research team

QOL

I spoke to Claire yesterday afternoon about her comments, which are the standard Parkinson's position, one I understand.  Her position on is entirely fair in the circumstances.

I have been encouraging Parkinson's UK to carry out 'robust clinical trials' since I first told them about the Pons machine in May 2015.  My reason for posting my original mail on Pons on the Forum, was to try and encourage others to support such trials.  Sadly the response has so far been negative.

What Claire didn't say in her reply was that in the last few days a second discussion has taken place between the Medical Director of Helius Medical, makers of the Pons machine and the research and management of Parkinson's UK.  Whilst as far as I could ascertain it has not progressed the clinical research further, it does indicate to me at least that the Pons machine has not been dismissed out of hand.  I am attending the Parkinson's AGM today in the hope of encouraging more people to support  clinical trials.   

Unfortunately my experience of taking new ideas to Parkinson's UK is not particularly positive.  Usually it takes several years before they take up the idea, if at all.  I took them the idea of dance as the best exercise for Parkinson's in 2008 and asked if they would provide some seed funding for a dance class locally.  They regrettably refused.   I was able to get funding from another charity and the dance class began finally in 2012.  It was extremely successful and is still running with around 24 participants every week.  When the English Ballet company started to get lots of P.R. for the dance classes they were running successfully for Parkinson's in 2014, Parkinson's UK finally gave the idea their support - 6 years after they were offered the idea.

You may well be familiar with LSVT - Lee Silverman Voice Training which was supported for a good few years and available on the NHS.   However when I took LSVT BIG, at the time a new high energy exercise regime to them in 2012 they had not heard of it and it has not become widely available and not to my knowledge been promoted.  It was excellent and helped my wife and others locally who benefitted from being taught the technique.  Indeed she still has monthly workouts of BIG with her original trainer.  I have just checked the Parkinson's UK website and the only evidence I can find is that there are a couple of Forum references to it in the SW of England in 2013. Yet it is a reputable organisation they had supported before and was an excellent exercise regime?  One can only wonder why Parkinson's UK have not apparently got behind it.  The problem is it is not pharmaceutical!

My belief is that the difficulties with Parkinson's UK are that they have psychologically at least got the disease!   They are generally very slow, fearful of anything outside of Pharmaceuticals, have historically been extremley controlling and autocratic,  and don't like things that are unfamiliar!  They are trying to move away from this, with their 'putting you in control' campaign for which they should be congratulated.  They by and large remain like those with Parkinson's, extremely risk averse and sometimes to be successful, you have to take risks.  Parkinson's UK was founded in 1969 as the Parkinson's Disease Society.  48 years later how close are we to a cure? 

QOL

 

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