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Parkinson's Improvement Programme News - January 2011

We are glad to share the views of people who find this programme helpful. Please send in your thoughts as to any effect the Programme has had for you. There are now over fifty known and twenty current participants in the UK

A Big Thank You to all those who have taken part up to now

A VERY BIG THANK YOU for donations to the programme. This continues to help fund supplies for several participants. Also a thank you to Higher Nature for the continued supply of lemon flavoured fish oil at a reduced price. This kind of help is wonderful. The programme costs the PIP charity about £3,000 per year at present. In order to facilitate the raising of funds to continue the Programme it has been registered with the Charity Commissioners. We are now charity no: 1137081. All donations from now on should be made payable to the 'Parkinson's Improvement Programme' - thank you

Parkinson's Improvement Programme is also registered for Gift Aid recovery of tax on donations. You can give through www.justgiving.com or directly by cheque to 27 Newton Road, Ashton, Preston, United Kingdom, PR2 1DY

It was disappointing to receive a letter from a local consultant saying that he saw no value in early or any use of food additives and supplements and advised all newly diagnosed PwP to start a drug regime based on the Schapira-Obeso hypothesis. This article can be supplied if you want to read it. It recommends dopamine agonists which many PwP consider to be the cause of their hypersexuality, compulsive gambling and/or obsessive behaviour. Side effects of these types are not uncommon and are the subject of a proposed PDS research project as well as ongoing court proceedings. You may wish to look at the many entries in the 'Compulsive behaviour' thread on the PDS Forum www.parkinsons.org.uk/forum

Now there is a possibility of an organised clinical trial of PIPmix in conjunction with the University of Central Lancashire. Discussions about funding are ongoing - offers of £30,000 welcome!

Until PIPmix is officially proved to be useful, and we hope it does succeed, then the informal PIPmix trial will have to suffice but PIPmix is AVAILABLE NOW and shown to work more or less for many people with PD. Research has shown the possible value of L-glutamine as an additive to the PIPmix and it has been in use for the past 12 months but is now an optional extra. The theoretical advantage is improved health of the intestinal wall by reduction of damage caused by bacteria such as Campylobacter, Archaea and Helicobacter among others. A healthier gut wall allows better absorption of the nutrients we need. L-glutamine is a well tested additive used by bodybuilders

If you prefer components of the PIP supplied as individual powders and oils please ask - most now seem to favour the PIPmix

One participant has used very little trehalose, another has doubled it, another has decided that up to five times the suggested amount of folic acid is good for him personally so we wait and see. You all know yourselves very well and are quite capable of making such adjustments

Just a note:
The Parkinson's Improvement Programme was recently derided as a mere 'recipe' by another PD researcher whose support might have been expected as we are all in the same business of trying to improve the lot of people with PD. The difference is PIP works very well for some people and it is affordable and available NOW

Here's a useful recipe from a happy PIP user

PIP Flapjacks - an adaptation of a 'Nigella' recipe from "Domestic Goddess"

Ingredients

The PIP additives are added for an 8 day course, which is 2 greedy flapjack portions per day. If you are on a diet double up the additives, and eat 1 portion per day. The combined oil/trehalose mix can be used in the chocolate topping, or add the powders and oil to the flapjack mix

  • 450g rolled oats
  • 75g soft brown sugar
  • 300g unsalted butter
  • 50g golden syrup
  • A handful of seeds
Method

PIP powders should be added in the proportion usually taken x7 to make a good week's supply (say 16 pieces @ 2 per day)

  • Oven 190°F (Gas Mk 3)
  • 23cm 9" square tin
  • Mix the oats and sugar
  • Melt the butter & syrup
  • Gently stir in to the oats, add PIP additives - mix well
  • Scatter seeds on top, if used
  • Press the mixture into the tin, bake for 25 mins
  • Cut into 8 or 16 chunks while still warm

Extra: Make butter icing according to the instructions on the packet. Add 2 dessertspoons of cocoa powder (if used), to the icing sugar before sifting. Use to ice the chunks of flapjack, once they are cooled

Some people using the PIP find that they need less levodopa medication or that tablets can be taken at longer intervals

It is expected that any change of prescribed medications should be in consultation with your GP or PDNS or consultant. However, many of you are very capable of timing and regulating your own medication(s) to suit how you feel at the time. I have assumed you have such competence when suggesting any reduction of levodopa products as the benefits of folic acid / Vitamin B treatments are felt. As dopaminergic neurons return to their normal function the requirement for extra dopamine from tablets gets less. Thus a normal levodopa medication dose becomes an overload and therefore less tablets are required or more likely increased time between doses becomes possible

A suggestion that a SMALL amount of Palmitoyl Ascorbate (PA) might be taken by inhalation into the nose resulted in it being tried by Andrew first. Not more than 10mg at a time please (a small pinch). PA is soluble in the greasy biofilm of the nasal discharge and clears blocked sinuses and passages in a few hours. Two or three repetitions leaves the nose clear for about a week. Inhaled through the nose deeply and quickly it is also effective against sore throat and chest infections

It is recommended as a cure for snoring by my long-suffering partner because it allows clear nose breathing and therefore a closed mouth! A letter to this effect was published in the BMA News in September 2008

It seems that many PwP suffer chest or sinus infections now thought to be one of the causes of PD as a result of chronic production of inflammation cytokines and bacterial antigens

The loss of sense of smell, often an early indicator of PD, is ascribed to the very closeness of the nasal passages to the base of the brain. Some theories of direct infection and brain damage in this area date back almost 100 years

A case history in the patient's own words

Background

I am a 55 year old female, with a confirmed diagnosis of Parkinson's in September 2008 although initial symptoms were noted in April 2005

Symptoms
  • Slight occasional tremor left hand
  • Rigidity left side
  • Difficulty walking
  • Lack of stamina

Initially reluctant to commence conventional medication, I began the Parkinson Improvement Programme (PIP) late November 2008. I modified the programme by taking vegetarian omega-3 due to my vegetarian diet. The Trehalose supplement was not available at that time

Within a matter of days, my dexterity improved. I was able to use a tin opener and open vacuum flasks. I had found this difficult anyway in the first instance as I am/was left-handed and have had to adapt to having a dominant right side

Over time, the following improvements were noticeable, not only to myself but also to friends and family:

  • improved stamina and no longer in bed by 21:00
  • improved walking gait
  • decreased urinary frequency
  • fewer panic attacks
  • improved mood
  • increased dexterity
  • much less pain, with many days in fact pain-free

On December 28 2008, I added conventional treatment, Azilect (Rasagiline), which has led to further improvements:

  • a more natural gait again
  • dexterity continuing to improve, e.g. slow but two-handed typing

I have also added Co-enzyme 10 as, anecdotally, it is recommended for People with Parkinson's At this point, I feel no need for further conventional medication

Comment by email:

Have been really busy this month. I have noticed that if I take my medication and supplements about 30 minutes before food they are far more effective and my mobility is improved. I am still managing on the low dose of sinemet. The new mixture sounds really interesting, it will be a lot easier to manage especially when I am away from home

and another:

For the progress report, I am told that I look very well and I'm keeping active with dog walking and other activities including aquarobics!

Flattery by imitation

A group at the University of Florida has applied for a patent on a mixture of substances very similar to the PIPmix. Try reading it on www.faqs.org/patents/app/20080292607

An email: (from a person on PIP for a few weeks)

No problem with quoting me in the newsletter. I don't know whether I'm jumping the gun here but I thought I noticed a slight change yesterday - something that had been missing long before diagnosis. Today the effect is even more noticeable........................................................... hello sense of smell - doesn't fresh coffee smell great!!! (and my gym towel needs a wash - phew!!)

Hope it's not temporary but I'll keep you posted. Has anyone else's sense of smell been restored on the PIP??? (Ed: YES - several similar reports) It's made my day

And another email:

As you have said, its a long term thing so not always easy to spot an improvement, however, before I started on the PIP I was going to ask my PD Nurse to increase my meds as I was starting to slow down, get pain, be unable to help so much around the house etc.

I discussed options with her and decided to hold off until we had finished holidays etc. Glad I did hold off - I now definitely don't need any more meds and am pretty much back to the old me - apart from my LHS arm / hand tremor (got anything that will stop me shaking?) which hasn't improved (yet!). We rode with the Pedal for Parkinson's team a couple of weeks ago - did the Oxford to Milton Keynes day - didn't have any problems

Thanks for the PIP (I'm a fan)

Thanks to all who help in this programme. We really are breaking new ground here. If some symptoms of PD are reversible as has been shown by people on this programme then more may be possible. Now we need to know how far it can be pushed back

More emails:

The other day I was making my way up a steepish slope on my beloved Marin (mountain bike) and was almost getting out of control by the power within my body to propel myself! Lots of of other observations too but the reasons for my resurgence I think are down to PIP/dietary considerations, mental adaptability and exercise

'Ran for 22 minutes pretty well non-stop two nights ago and have returned to playing the accordion. Also, I don't know if I told you but my increased dexterity has enabled me to offer lessons on the guitar and I have just advertised to teach my latest craze..the ukulele.' (11 years after diagnosis)

No changes have been made to the medication regimes these people were on prior to starting PIP

Another participant on the trial (diagnosed 1997) reported November 2009 that after only six weeks on PIP he had been able to return to playing bowls after some years absence. He had also slept for two whole nights for the first time in many years. He had used palmitoyl ascorbate as a snuff (inhaled through the nostrils to relieve chronic sinus blockage) thrice weekly. Clearance of such blockages allows better oxygenation without the intense mouth breathing that results in snoring

By email:

After three weeks on PIPmix I didn't think anything had changed until I realised that I had been able to subconsciously put my hand straight into my pocket - previously something that needed serious concentration. A great improvement in dexterity

An abstract (summary) of the Parkinson's Improvement Programme was submitted to the World Parkinson's Congress held in Glasgow in September. A body so beholden to industry can't accept an idea from 'outside'. Despite PIP being the only demonstrable treatment that can reverse some PD symptoms the abstract was rejected for publication. It might show up the efforts of others?

A success story from the partner of a patient diagnosed 1999

Started PIPmix late July 2010

Since D has been taking this mixture we have noticed a marked improvement in his condition. D's walking has improved. Yesterday he walked roughly a mile without a stick and his stride was long and his heels were down, he was confident and stood straight, which is something that other people have remarked on. He still has moments of feeling of being pushed but now can control these and with a slight pause in his movements he corrects himself and sets off controlled. I am now able to walk further holding his hand as he no longer pulls me which is great

His movements around the house are controlled and today he carried a tray with tea, cereal and toast from the kitchen to the bedroom without a problem and then held it with one hand and put each item on my bedside cabinet without spilling anything. He did this as if it was easy which it wasn't before. It is wonderful, his confidence has grown and he now does things he hasn't done for 11 months. He climbed up a ladder onto a scaffolding and fixed the flat roof last week! We have recently seen people we have not seen for many months and they all can see a marked improvement in his overall general appearance and movements. One friend who sees us roughly every couple of weeks actually rang me after seeing him and said that he had seen a lot of improvement in 2 weeks and that he thought D was nearly his usual self and he couldn't believe the change in him. D still has times when he is hurried and his ankles are weak but this is usually when he is tired. He now has catnaps and these help; that is when I can get him out of the garage!

I just want to say a big thank you for giving me my husband back. He is happy, confident and today he said he feels like he is coming to the end of the bad days and that he feels great; he is doing so much more and enjoying life again, thank you!

Another great report

From a situation of walking only with support, speech slurred and indistinct, inability to use left arm with any strength, PD diagnosed June 2008, started on PIPmix March 2010. By October, can play tenpin bowls on Wii with either hand, equals husband's scores, speaks clearly and with confidence, walks without support and feels great

A further report from a PIPmix user (December 2010)

I am writing to ask for another pot of PIPmix - it still seems to be working well - I am still off all medication and the insomnia problem also seems to be improving. I am practically 'symptom-free'. (PD diagnosed 2009 possibly hereditary; on PIPmix from July 2010)

For further info contact Andrew@brainhelp.info

The Parkinson's Improvement Programme is part of the Palmitoyl Ascorbate Project which comprises work on:

The Palmitoyl Ascorbate Project is involved with research into


Parkinson's Disease www.brainhelp.info
Cancer www.cancerfix.info (under construction)
M E (Chronic fatigue) www.brainhelp.info
Psoriasis www.fixdryskin.info

Based on work published in 1982 it is expected that Palmitoyl ascorbate will have a powerful anti-cancer action as it is anti-angiogenic (restricts blood vessel development in the tumour) and it is also the precursor of dehydro-ascorbate which combines with homocysteine lactone, unique to the tumour cells, and kills them

Cystic fibrosis

It is thought likely that Palmitoyl ascorbate will be of value in CF because it is a powerful antibiotic against Pseudomonas sp., a nasty bug that colonises airways in CF patients

Copyright © 2011 Andrew Carmichael