Pianeta dei Pazienti VS Pianeta dei Neurologi

Se hai il Parkinson, tendi a pensare che i neurologi, specialmente quelli che si dedicano alla ricerca, dovrebbero fare solo una cosa : trovare una cura o almeno una terapia efficace. Spero che i neurologi pensino la stessa cosa.
Pazienti e Neurologi vivono su due pianeti completamente diversi. Se osservi i due pianeti da lontano potresti avere la sensazione che, a parte le evidenti differenze date da età e sesso, tutti gli abitanti si assomiglino. Se osservi meglio e da vicino scoprirai invece che non nulla di uniforme o standard tra di loro.
Non c’è da stupirsi quindi se esistono dozzine di pianeti di Pazienti e dozzine di pianeti di Neurologi.
Come associazione cerchiamo di indirizzare la ricerca verso le finalità chieste dalle persone con Parkinson e lo facciamo dal Pianeta Pazienti. Ci chiediamo : “siamo davvero molto diversi, noi pazienti e ricercatori?” Sì! Ed ecco perché :
1. Sensazioni
I pazienti sanno cosa vuol dire avere il Parkinson. I ricercatori (salvo rare eccezioni) no;
2. Progressione
I pazienti hanno fretta che qualcuno trovi una cura e questo semplicemente perché temono la progressione della loro malattia. I neurologi non hanno nessun timore perché sono loro stessi che gestiscono la progressione delle loro ricerche;
3. Sogni tranquilli
I pazienti non possono semplicemente rimuovere il Parkinson dai loro pensieri prima di coricarsi. I neurologi possono appendere i loro camici bianchi ed indossare il pigiama prima di coricarsi. Al calduccio sotto le coperte, potresti non distinguerli da una persona comune. Puoi fare lo stesso un malato di Parkinson ?
4. Lavoro
Cinque anni di Parkinson ed i pazienti possono considerarsi fortunati se riescono ancora ad averlo, un lavoro. Cinque anni di brillante carriera di ricerca ed i neurologi sono oramai lanciati, specialmente se sono bravi, cominceranno a viaggiare sempre più spesso passando da una ricerca all’altra;
5. Formazione e linguaggio

Oltre ad esserci una infinità di varianti di Parkinson, ci sono una infinità di varianti socio-economiche. Un paziente ha una formazione in geografia, uno in chimica e un altro magari non ha frequentato neanche le elementari. Molti dimenticano inoltre che solo una parte delle persone con Parkinson comprende il “neurologhese”, una lingua a metà tra il latino ed il klingon. Molti di meno leggono e parlano inglese. I ricercatori certamente non sarebbero ricercatori senza la loro formazione accademica e sicuramente non potrebbero pubblicare i loro “paper” all’avanguardia se non fossero in grado di parlare o leggere perfettamente l’inglese.
6. Visita
Se vivi sul Pianeta dei Pazienti puoi fare due cose. Puoi aspettare e vedere cosa ti prescrive il tuo medico oppure puoi fare periodicamente un salto sul Pianeta dei Neurologi. Optate per questa seconda opzione e farete meglio a documentarvi preventivamente altrimenti non ci sarà molto da capire.
7. Oro
Alcuni abitanti del Pianeta dei Pazienti stanno cercando freneticamente “l’oro” : quella cura miracolosa che li libererà dal Parkinson per sempre. Ma di solito non c’è nient’altro che inghiottire ciò che tutti gli altri stanno già ingoiando : pillole che in buona parte hanno una tecnologia di qualche decennio. Sul Pianeta dei Ricercatori, il ricercatore medio ha solo una cosa in mente; essere il primo a trovare quell’oro. Pubblicare una ricerca innovativa che riporti la propria firma. È un posto estremamente competitivo, il Pianeta dei Neurologi.
8. Soldi
Sicuramente non guadagni niente se abiti sul Pianeta dei Pazienti. Il tuo reddito è costantemente minacciato. Le visite sul Pianeta dei Neurologi (salvo sempre rare eccezioni) le paghi spesso di tasca tua. Devo ancora incontrare un neurologo che lavora “pro deo”. Questa è una differenza enormemente sottovalutata tra i due pianeti. Le valute sono completamente diseguali. E temo che ciò renda il paziente subordinato al neurologo. Non è solo la conoscenza che è potere, ma anche il denaro. Puoi dire quello che ti pare della partecipazione, dell’impegno e della bontà del paziente, su quanto sia fantastico, ma se non sei disposto a pagare, non puoi accedere al “sapere”.
9. Libera scelta
Non penso ci sia bisogno di approfondire questo punto …
10. La collisione fra i due pianeti 

La buona notizia è che siamo tutti solo persone, che tutti vogliono la stessa cosa, magari per fini diversi. Solo che tu Paziente hai un diverso concetto del tempo. Le ricerche possono durare anni e anni, e quando sarà messa a punto una nuova pillola bisognerà vedere se a qualcuno converrà produrla e venderla subito o se sarà meglio aspettare che il mercato sia “più maturo”, sempre che nel frattempo i “fiumi di Dopa” non si siano prosciugati.

Probabilmente, non lo ammetterete mai, ma le 10 differenze di cui sopra non sono una novità per voi neurologi / ricercatori. Per favore ricordateli quando elaborate i vostri programmi di ricerca. Venite a visitare il Pianeta dei Pazienti. Chiedete agli abitanti locali: cosa posso fare per aiutarvi, ora ?

E voi, smettetela di essere pazienti, informatevi con criterio, pretendete di capire, confrontatevi, fate scelte consapevoli, affidatevi laddove riconoscete una comunione di intenti, intervenite ai congressi, mettetevi a disposizione della ricerca e ricordate sempre che la ricerca esiste perché esistiamo NOI.

Una buona occasione per mettere in pratica un confronto costruttivo è la Convention “Parkinson : corpo & anima” che si terrà a Roma l’1 e 2 dicembre 2018. Noi ci saremo, vi aspettiamo. Scaricare il volantino : https://www.accademialimpedismov.it/filesito/… .

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Testo tradotto ed adattato da Giulio Maldacea. Testo originale di Mariette Robijn, MSc, blogger del World Parkinson Council 2019, fa parte anche nel WPC 2019 Advocates Committee per il 5 ° World Parkinson Congress. E’ una imprenditrice che vive nei Paesi Bassi. Potete leggere il suo blog in inglese e olandese su marietterobijn.com. Testo originale : https://www.worldpdcongress.org/home/2018/5/18/planet-patient-vs-planet-researcher.
Le idee e le opinioni espresse in questo post riflettono esclusivamente l’autore / i. Non riflettono necessariamente le opinioni della World Parkinson Coalition®.

A new drug called Exenetadine

The interpretation of the results by WeAreParky

This important finding was first reported on the Lancet.com (official link) website where on August 3, 2017 the outcome of a controlled clinical trial, conducted between June 2014 and March 2015 on 62 patients who had an average progression of Parkinson’s disease, was publicly disclosed .
The study (Phase II) took place over a period of time that lasted altogether 60 weeks.
Thirty-two (32) randomly selected patients were asked to self-administer a 2-mg dose of Exenatide by subcutaneous injections in addition to their regular medication regimen which remained unchanged.
Whereas the remaining thirty (30) patients, self-administered a 2-mg dose of a placebo.
Laboratory tests on blood and on spinal fluid were taken to ascertain the presence of Exenatide.
Furthermore, readings resulting from carried out clinical scales (UPDRS II) and scanned (DatScan) dopaminergic activity levels (reference : “the Michael J Fox Fundation” which funded the study) were used as a platform for Phase III final study, which as of yet did not start.
The released outcome, of the aforementioned controlled clinical trial, showed a noticeable improvement in the symptoms but the announcement or representation that there were no serious side effects, which could be directly related to the clinical study, proved to be equally important
The authors of the study in their conclusive statement relate that : “IT IS NOT CLEAR whether Exenatide has any influence on the pathophysiology (symptoms) or has any long-term bearing on the pathology itself (i.e., if it can stop neurodegeneration).”
In fact, the clinical studies whose aim was to figure out where to “place” or better yet if Exenatide has any influence or bearing in the treatment of PD, initiated in 2009 when the first animal laboratory experiments (Phase I) were carried out by Astrazeneca and Bristol Meyers Squibb on Byetta® and Bydureon®. At the time it was demonstrated that the stimulation of the GLP-1 receptor could potentially produce a neuroprotective effect in therapeutic treatment of Parkinson’s and Ischemia.
We also found a clinical study carried out in 2014 (Aviles-Olmos) which showed that the positive effects on symptoms indeed lasted one year past the date when the administered treatment was ended
Actually, this unique result represents a singular positive hope for potentially long-lasting effects…
Is Exenatide the cure for Parkinson’s that we have all along been waiting for ?
The best answer to this question was given by dr. Weiner of the MJFF who was responsible for “putting the money in to fund the study”.

And we quote :
“The trial results are intriguing, but the data is not sufficiently robust to point to a clear benefit for exenatide in PD. Definitively evaluating exenatide’s safety and efficacy in Parkinson’s would require a larger, well-designed multicenter trial. The mechanism of exenatide and similar drugs (i.e., GLP-1 agonists, such as liraglutide and lixisenatide), as well as previous supportive evidence, make them interesting therapeutic targets in Parkinson’s. Until more is known about their potential role in PD, though, patients are cautioned not to add them to their Parkinson’s regimens”

The full article.
At the following link you can download (pdf) the full article of the clinical study

Should the exenatide-based treatment work, how much would it cost in Italy ?
Currently, a kit that contains 4 – 2mg pen and one of Bydureon® would costs about € 500.00, on the basis of the regimen implemented for the clinical study it would require a kit per month.
To date, the “generic” of these drugs it is not available because it does not exist. There are rumors, though, that there is a generic Byetta® but it does not have the slow-release feature that, on the contrary, Bydureon® has, and so for this reason Byetta® requires two injections per day.

When will Phase III start ? you should ask Trump this !
The drug has already been approved by the FDA and it has been widely used in the treatment of diabetes.
Hence, it has already followed the approval process up to Stage III. According to the “21st Century Cures Act” so much sought by the Obama’s administration but currently strongly opposed by the new US President, Donald Trump, phase III in these times of “repositioning” or maybe better yet of restructuring phase III strictly may not have to be undertaken given that it could be possible to compress Phase II and Phase III in a single process which could involve a group of “only” 1-300 patients. This, in turn, would greatly reduce both the costs and the timing associated with the approval by the FDA of the drug as a viable treatment of PD.
Then, it would only remain to evaluate the real beneficial effects on the pathology seen in the short-to-medium-long term range. Source: The Science of Parkinson’s disease

The view of WeAreParky : Cure or Therapy (remedy) ?
In recent years, the aim of most clinical studies or researches undertaken for Parkinson’s disease are finally focused on seeking a cure.
Care and therapy have two very different meanings:
• The cure eliminates the pathology, that is, it “HEALS”
• Therapy helps to MANAGE the symptoms of the disease by acting in a beneficial way on the same symptoms.
Being a neurological disorder, and as it is commonly known that once the nerve cells are damaged unfortunately they can’t be repaired, this tends to complicate things even more
This means that even if we stop the neuro-degeneration the damage already done remains, obviously we can always try to work on rehabilitation.
PD implies that the affected population may be at one of the various progressives stages of the disease – which range from those who are yet not aware of their condition (pre-diagnosis ) to those in more advanced stages of the disease.
Hence any discussion whose topic is a “cure for Parkinson’s disease” should take in due consideration the progressive nature of the disease which is also time related.
Simply stated : let’s us hypothesize for a moment that all goes well and that the outcome of phase III confirms that Exenatide works well by treating the symptoms and stopping or slowing down neurodegeneration without causing any major side effects.
This would imply two very different meanings:
For the newly-diagnosed this would entail a cure
For all the others this would mean that we have a drug therapy that stops neurodegeneration and thus the worsening of the symptoms

We have sought the opinion of Italian neurologists. A number of known neurologists were asked to kindly provide their view on the above reported topic.
All the received answers will be published soon.

 

Translated by WeAreParky volunteer Pino Porpiglia (Thanks Pino 😉 )

What and how should we drink?

Today we will provide a collective answer to the question that many ask us on a daily basis but even more so in the summer time. What and how should we drink?
For those who take their medicines by mouth the advice that many neurologists give is that the water should be at room temperature or slightly cool – BUT NOT FROZEN -.
For soluble medicines (for example the Sirio which often dissolves badly remaining largely in the glass or on the spoon), it is preferable to use sparkling or carbonated water.
For those who take vitamin C via Cebion or Magnesium Supreme it can be taken simultaneously.
Some Parky find benefit in taking Levodopa doses while sipping green tea, especially the Japanese “Matcha” infusion quality.
Green tea is rich in substances – L-Theaina in particular – which facilitate the production of Dopamine.

GIU_2481
Some “colleagues” in the summer time prepare a 1-liter bottle in the morning with two sachets of green tea – or equivalent in infusion – that they use during the day to take oral medicines. To this combine another liter of normal water during meals.
Alcoholic beverages are strongly discouraged because they can significantly reduce the beneficial effect of drugs and some supplements such as vitamin B1.
All frozen and very carbonated drinks are also not recommended because they can complicate the digestive phase and cause damage to the digestive system, which is very important for us to keep in perfect working order as it is the way we assimilate the drugs.
fegato-stomaco.600Finally, we report the advice of the “three glasses”: to accelerate the entry into action of the medicines taken orally it is suggested to drink three glasses in sequence after swallowing the tablet, the water will overcome the stomach making it enter the small intestine where assimilation actually takes place.

 

For those Parky who have problems swallowing (dysphagia), we remind you that:
the first thing to take into account is the position during the swallowing : erect bust, feet well resting on the ground and possibly forearms resting on the armrests
the environment must be welcoming, bright and must put the person at ease
For those who assist they must position themselves in front of and at the same eye level
all foods that have mixed consistency (liquid, creamy and solid) are not recommended
A suitable size straw should be used when drinking liquid beverages.

Parkinson Disease Therapeutic Strategy 2.0

To our Association, “Therapeutic strategy 2.0” has now become the recommended therapeutic approach for Parkinson’s disease ( “PD” ).
In trying to make it easier for the reader, we have selected and put together, in a point like format , all the advice and all the examples of good practice that we have directly tested upon ourselves.

Acceptance

Being diagnosed with a chronic illness such as Parkinson’s disease can come as a shock .
It’s normal to experience a variety of emotions in the wake of such a diagnosis.
Digesting the news of the disease may be accompanied by a number of alternating emotions among which DENIAL or, CONFRONTATION, SHAME, SADNESS, ANGER and finally ACCEPTANCE .
These are very common and human reactions to what it may be perceived as a threat to our state of well being.
Denial or trying to hide it may result in fighting two battles and wasting crucial energies.
There is no reason to resort to this type of coping mechanism.
It is simply not your fault, nor you can blame it on your lifestyle if you’ve got it.
Accepting it also means communicating it to other people – you included – thus reducing the anxiety and that state of initial panic or bewilderment that a PD diagnosis may bring with it when first announced.
We have to challenge negative thoughts and/or catastrophic misinterpretations by acquiring accurate knowledge,  implementing a positive attitude and embracing our daily tasks with a pro-active approach.
Undoubtedly, reacting by actively learning to face the illness and manage the associated feelings may in the end bring about feelings of empowerment and resilience which in turn may induce us to live a much more fulfilling life
Parkinson’s disease does not kill, symptoms can be managed and kept under control even for years (we have Parky that proudly have reached the “40 years” mark they’re over 70 and go to pick up their grandchildren at school..!!!).
In the end, it all depends on you and on your emotional and psychological state of mind.

Don’t just settle for the “little pill”

Mr. P is an uninvited guest that stays with you to the point that it becomes a tenant, but more than anything else he is an intrusive and an unappealing tenant.
At present, it cannot be evicted but we know that research has made significant progress and has become, on many fronts, more target oriented and today, as compared to a few years ago, the symptoms can be managed much better.
We also have at our disposal several and diverse weapons that we can deploy to our advantage and let’s not be lazy about it by just accepting the “little pill”.
At the moment drug medications represent the only non invasive therapeutic vehicle to help us contain the symptoms, but it is well known that there can be some troublesome side effects.
Therefore our recommended strategic approach is to reduce, as much as it is possible, the intake of drug medications.

The other weapons

Beside drug medications the other weapons available to us are :

  1. A supportive and caring network system
    Let’s face it – we cannot do it alone. Spouse, companions, parents and friends will be our second most important ally or caregiver.
    The love and care, the affection, the feelings, the emotions and the positive energies that you will be able to share with them are an invaluable life’s fuel.
    With this in mind, stay away from pessimistic people or circumstances that may bring about negative outcomes even if you have to appear or be perceived as a self centered or an egotistical person; now it is your turn to get that much needed and deserved positivity.
  2. Work, hobbies and other interests
    Stay active, practice sports and take up new hobbies and interests but always in accordance with your budget or financial limits.
    Be realistic, accept the fact that maybe things cannot be done or accomplished in the same way as you did before.
    Find new ways or methods, even creative ones, but always attuned with your symptoms.
    Confront yourself or test your views with other people who have PD.
    Take advantage of all benefits that are available when an invalidity or a disability condition may arise
    If you have some spare time get involved in outdoor activities better yet if these are social and slightly dynamic.
    You might find that life in the “slow lane” or , when possible, simply taking it easy may be more enjoyable.
  3. Rehabilitation and physical activity
    Based on your Neurologist’s advice or recommendations, spend some time each day doing even simple exercises from simple morning stretching, to rehabilitation physiotherapy, occupational therapy, speech therapy, cycling, treadmill, swimming, walking, Nordic walking, just to quote the most suitable for us “parky” . further in-depth study : Therapy, self-therapy and alternative therapies.
  4. Diet
    It is well known to everybody the importance of an appropriate and balanced diet for people with PD
    Here “importance” of diet is intended not as sacrifice or deprivation, but as a diet able to maintain a satisfactory state of health.
    In the presence of chronic illness, a dietary program becomes a fundamental prerequisite for the well-being of the individual.
  5. Supplements
    In pole position is Vitamin B1 (English version will be available soon) but also other mineral supplements and phyto/plant -supplements (English version will be available soon) constitute a valuable help to the human body, as long as they are chosen with the consent of a specialist (herbalist, naturopath, etc.) and the Neurologist’s approval.
  6. Psychological support and counseling
    Depression is one of the distinctive symptoms of PD, along with being the negative side effect of certain drug medications. Often Anxiety and panic attacks characterize, in particular, the initial phase of PD. It is therefore most important to promote therapeutic interventions for the single individual which would take into account not only the changes that will occur at the motor level, but also include issues that will affect the psychological sphere.
    In this regard it is necessary to put in place counseling sessions either for the individual person or for group therapy all aimed at providing support and counseling for the psychological suffering associated with the various stages of the illness.

Translated by WeAreParky volunteer Pino Porpiglia (Thanks Pino 😉 )

Vitamin B1 and Parkinson : The final results of the research carried out by WeAreParky

It has taken 18 months to answer the very important question:

Is Vitamin B1 effective in improving the quality of life of people who have Parkinson’s disease ?

to answer to this question we have:

  • Carried out a first 30 days trial test directly supervised by the association = positive results
  • Prepared and posted on line a questionnaire = over  60% of the participants have found an improvement in their quality of life
  • Put in place  a research  through which we came across five (n. 5) other international studies all characterized by positive results
  • Provided, during these past 18 months, assistance to more than 300 people with PD  who  had contacted us directly = more than 2/3 of the people have found an improvement in their quality of life
  • asked neurologists for their opinions and/or  input =  the vast majority of them  expressed perplexity on the efficacy of vitamin B1
  • asked other associations, that operate for similar causes, to  jointly collaborate and share information = unfortunately their responses were not very promising
  • asked other professionals (molecular biologists, chemists, nutritionists, etc…) for their opinions and/or input : almost all of them have expressed an interest for the research;  some of them even suggested other approaches while others  have provided valuable insights or information;

Interestingly some of them had already conducted experiments  to test the efficacy (or lack of it) of Vitamin B1 when taken specifically for this pathology.

Based on all of the aforementioned research activities, (consisting in the findings gained from running an independent 30 day experiment) newly acquired information and feedbacks we can affirm that :

  • First and foremost the integration of vitamin B1 cannot cure Parkinson disease nor it can replace the traditional prescription drug therapy
  • For people with Parkinson the integration of vitamin B1 can only provide an improvement to their quality of the life
  • On the positive side, for people with PD, the integration of vitamin B1 can be an excellent motivational factor  to conduct a fitting lifestyle, which in turn through good nutrition, regular  physical activity and a positive emotional approach would :
    • sensibly improve the quality of life
    • slow down the progression of the disease
    • reduce medication regimen and accordingly reduce proven side effects

In which cases it is desirable to integrate vitamin  B1 ?

Just like all the other vitamins it is desirable to integrate B1 when its physiological levels are low and they cannot be restored to normal levels, even by adjusting and/or improving the daily nutritional diet,  (it must be kept in mind that B1 it is particularly abundant in cereals high in fiber  and in swine’s meats).
Hence, to ascertain if the level of Thiamine (B1) is normal, it will suffice to do a specific blood test  that would provide the actual value of Thiamine, whose acceptable levels range from 2-5 micrograms for deciliter.
We have found that people with PD seldom have optimal values of vitamin B1, particularly in  people who are over the age of fifty.

Obviously the lower it is the value of B1 when the trial begins the higher will be the benefits gained  by taking it.    

Why in certain people it doesn’t have any effect?

In our research we came across some cases where the integration of B1 didn’t produce any tangible benefits.

We believe that, this was due to the fact that the level of Thiamine was already at its maximum and once reached this upper limit the excess gets expelled through the urine or it could be due to a wrong diet, given that the consumption of alcohol, drinking of coffee or the digestion of heavy foods can easily interfere with the absorption of Vitamin B1.

What is the best way to integrate Vitamin B1?

Currently in Italy Vitamin B1 can be acquired either over the counter (tablets : no prescription needed) or with prescription (vials : prescription needed) and it comes in three different types :

  • Benerva in tablets of 300 mgs  (no prescription required – “over the counter”)
  • Benerva in vials of 100 mgs / 1 ml (prescription required )
  • Biovea B1 in tablets of 500 mgs (no prescription required – “over the counter”)

Considering that a person with PD must maintain, for all her/his life, optimum levels of B1, it would be naïve to think of using vials, if not just for an initial phase.

The taking of medication by I.M. injections will prove to be quicker and more effective as compared to the ones taken by mouth.

We have found that on average four (n. 4) tablets of Benerva 300 mg  would be equivalent to  one (n.1) intramuscular injection.

The Biovea B1 received the most positive feedback, not only for the dose titration of Thiamine (tablet of 500 mg, but also because it contains 100 mg of magnesium, an extremely important element for the production of cellular energy). 

Normally the medication regimen consists of one tablet per day for the first month at the end of which it is worthwhile to repeat blood tests to ascertain le level of Thiamine.

It is recommended to alternate with a similar period where there is no intake of Thiamine (B1).

It is highly recommended to consult with a nutritionist who has had extensive experience in advising  patients with PD.

How should Vitamin B1 be integrated with prescription drugs therapy?

Often the importance of a proper diet combined with the intake of Vitamins is often underestimated or taken too lightly both from the patients and from the clinicians (neurologists, assistants, etc..).

Probably it is easier to increase the dosage of the medication (first and foremost levodopa) to allay the discomfort perceived by the patient instead of undertaking more complex and perhaps beneficial alternatives that a trained or specialized nutritionist, if consulted, could provide.

The dismal conditions that characterize the current state of the (SSN) Italian National Sanitary Service certainly don’t help.  In many cities there are no medical centers that specialize in the treatment of PD.  Neurologists are overwhelmed by their workload or stuck in red tape or trying to navigate in a petrified bureaucracy.

Besides, the exceedingly specialist-oriented approach of recent years doesn’t allow for the treatment of a pathology that by its nature requires a multi-disciplinary intervention

Seldom will Neurologists exhort patients  to monitor the level of the Thiamine prior to the integration of  the Vitamin (B1).

The mere fact that vitamin B1 can be purchased just like an over the counter medicine (does not require a prescription,  exception being made for Thiamine Benerva in vials) directly by the patient it would imply that it is not covered by the “Mutua”  (Italian governing body in matters of health services and prescriptions drugs) but luckily it has a reasonable cost of roughly 8 € /month .

It is advisable though to consult a nutritionist who has particular knowledge in recommending diets for people with PD; this special knowledge would enable her/him to provide valuable insights and advise with regard to the interaction : food-nutrition.

Recent reports tend to suggest that, from a drug-interaction standpoint, Vitamin B1 could alter or interfere with  conventional prescription drug therapy.

Should one decide to start integration of Vitamin B1, we suggest to do so at a time when the symptoms are stable and by simply not altering the medication regime (levodopa),  this would allows us to have a clearer picture should new symptoms arise

Possible side effects caused by high doses of Vitamin B1  (Dott. Costantini) * * News 03/04/17 **

We have received a note directly from the Dott. Costantini, which addresses the possible side effects of Vitamin B1, that we would like to share by publishing it :

“The use of vials for intramuscular (I.M.) injection of Vitamin B1  can produce a  very serious allergic reaction  known as “anaphylactic shock”.  Such reaction is very rare and has occurred only when high doses of the medication were administered repeatedly intravenously. Also very rare have been reactions known as nettle-rash (urticaria) which would require the suspension of the therapy and other one known as “Generalized Itch”. This last one can be taken care of by administering  low doses of antihistaminic. Furthermore, the use of high doses of vitamin B1 taken by mouth or by intramuscular injection con manifest itself with symptoms typical of an overdose whose incidence would be 5 -7 for thousand of the treated cases. Here we are dealing with an unpredictable event but not dangerous for the patient. As a general rule the initial minimum dose administered for the cure of diverse  neurodegenerative disorders consists of two vials of 100 mg per week or 4 grams per day to be taken by mouth.  If in time these doses should result excessive for that particular patient it would occur that after an initial improvement  the patient would start noticing a reduction in the efficacy of the treatment and the reappearance of the symptoms that had initially regressed.

Increased symptoms of anxiety and irritability con also be observed. Should this be the case the therapy is suspended for a few days and in a joint decision with the prescribing physician arrangements are made to predetermine the entity by which the prescribed  medicine on should be reduced.  In general we reduce the dose by 50 %. In the last five years we have treated, even with higher doses, roughly 2000 patients of which 1500 were people that had Parkinson disease.  Routine laboratory tests (normally taken during regular check-ups)  exhibited values that fell within the acceptable range nor the patients displayed any signs of clinical distress. We had two cases of nettle-rash (urticaria), and two cases of generalized itch. In one case we had to suspend the treatment because it provoked vomit when taking the medicine”.

Who should not integrate Vitamin B1 ?
** News 03/04/17 **

To maintain the level  B1 near the maximum levels for prolonged periods can cause an acceleration of the biorhythms and therefore produce a potential impulse capable of fostering the  growth of preexisting breeding grounds of tumor cells.

We must keep in mind that we are speaking of “potential risk”, as of today there has been no reported case, actually we made reference to this at the urging of an oncologist we also believe that we have an ethical duty to report this and to make all reasonable efforts  to provide complete information.

It is strongly recommended that patients with cardiovascular pathologies MUST first consult with their family physician before embarking on an integration of vitamin B1 because they could have a negative or adverse  interaction with other drugs that they might be taking (for instance Warfarin / Coumadin® and Digdoxin / Lanoxin)

How to maximize the benefits of the integration of vitamin B1? Therapy 2.0.

By now it must be clear to everyone that  Parkinson disease cannot be challenged single handedly with a pharmaceutical approach.

In the long run the increased dosage of the medicines to counter the  progression  of the disease, will eventually lead to a worsening of the side effects brought about by the same medicines.

It has been demonstrated through scientific research and also mentioned in numerous neurological conferences  and/or annual meetings that from a neuroprotective standpoint regular physical activity will provide higher benefits than the ones gained through prescription drug therapy.

We recommend that you become fully aware of what has been said above and that you take it upon yourself to lead a lifestyle that follows the guidelines indicated in what we call : Therapy for the Parkinson 2.0 (english version available in a few weeks).


Translated by WeAreParky volunteer Pino Porpiglia (Thanks Pino 😉 )