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 😉 )