Pons 2 ( clinic near Moscow)

1)clinic clinic is located 25 km from Moscow,

MOSCOW REGION, ISTRINSKY AREA, PAVLOVSKAYA SLOBODA, Lesnaya STR, 8

Facebook in Russian:

https://m.facebook.com/CenterRehaline/

For contact and coordination, please send a letter to:

medsyst@hotmail.com,

Dr. Evgeny Bugorsky

https://youtu.be/OMnitcytVhE

2) they can take children’s with CP only from 6 years old ( child need to cooperate during pt therapies with using Pons) and it’s intense therapy program.

3) they can give Pons only for 3 months ( rent) it’s standardization of protocol as I understood …14 weeks….

So our experience in Moscow clinic is really good ( very professional aproach on my point of vue) and really good intensive therapies. And I was in a lot of intensive clinics already…. they really work well. If your child is not able to do 4 hours training per day please tell them that it’s too intense for him ( you think)…. I am sorry but with cp yes we have to work and train a lot children’s…..

My son definitely progressed with PoNS Device but it’s difficult to notice in 2 weeks

His balance improved

Coordination improved

His posture improved

His hip position improved

( so I can say that he definitely progressed because we started to use Pons in March 2018) and yes travel to Moscow was our second intensive for Pons treatment….

What I have to say : if you speaks only English it could be a bit difficult ( 99% of Russian population don’t speaks English ok?) and it’s normal 99% Usa populations speaks also only one native language 😉 so if Russian come to USA they have or to face this difficulty or to take personal guide….

So what I advice you – if you going to travel to clinic near Moscow -I advice – to take translater services ( ask this possibility in clinic may be) if you want to have somebody with you during time you are not in clinic ( lunches / evenings and Sunday so than you will have somebody who can help you to call taxi / do shopping etc…)

We stayed in Istra ( we took chamber in part of building where they have lift it’s important for parents with child on wheelchair… but it’s not standard rooms in this part of building) in standard rooms you will have stairs and you can’t take them with not walking child.

We had also possibility to go to swimming pool before 18h every evening in near building ( not same building about 100 meters walk) they have also jacuzzi and sauna their. ( you need to get medical certificat in order to be acsepted to swimming pool it’s easy check in nearest building where they have medical staff ( but for sure you need to understand haw to do this 10 minutes checking of your skin -so you need speak Russian or need somebody who will translate)…..

You can stay in the clinic appartement ( it’s the same building) it’s fully equipped appartement (yes they have handicap entrance) plese see on photos the degrees of angle to puch wheelchair and if it’s ok for you…

If you want photos of 3 chambers of appointment ( ask me in private).

We tried 3 different shopping areas (near by clinic) honestly we was happy to eat lunch in this area :

Pavlovo Podvorie ( in area they have a lot of restaurants -we loved « Chaihana ») as well as a lot of shops/ pharmacy / foods store etc…)

chaihana resto:

and we visited very interesting Biggest private museum in Europe for old mechanics ( cars/tanks/ motorcycles /planes etc…..) very very impressive 😉

It’s only 20 minutes taxi drive from clinic worth to visit ( they have possibility for wheelchairs entrance and lift in museum)

So if you have questions ( contact me)….I will answer when I have time 😉

see also this Great video:

Really good explanation about Pons by Yuri Danilov

And a lot of examples at the end of video so if you can’t read scientific studies lisen videos :

https://www.pbs.org/video/university-place-modern-neuroehabilitation-ep-440-1/

https://youtu.be/u68ZyMXI4n8

But for somebody who love read studies: here study which explains really good haw to use PonNS device:

https://www.ncbi.nlm.nih.gov/books/NBK299239/

« PoNS is an apparatus for translingual electrical stimulation of the brain that enhances the brain’s natural ability to repair damaged areas and form new functional pathways.

A new innovative method of using peripheral neurostimulation for neurorehabilitation was presented at the World Congress on Psychophysiology in St. Petersburg in 2010. This method was developed at the University of Wisconsin, USA, in a laboratory headed by renowned scientist Paul Bach-Rith, one of the founders of the modern concept of neuroplasticity. In the laboratory of tactile communication and neurorehabilitation, a device was developed for electro-tactile stimulation of the tongue, which made it possible to significantly increase the susceptibility of the human brain to the restoration of lost functions. At the moment, the device has the name portable neurostimulator (PoNS). This is a new generation device for peripheral neurostimulation, based on electro-tactile stimulation of human skin in the most densely innervated tactile region – the language. The language is technically preferable for electrical stimulation, since the oral cavity provides more favorable conditions, such as a constant level of acidity, a constant temperature, conductivity and humidity, as well as lower thresholds of excitability compared to other skin areas » – (Kaczmarek, KA) spatiotemporal pattern presentation // Scientia Iranica D. 2011. Vol. 18. P. 1476-1485; Tyler ME, Kaczmarek KA, Rust KL, Subbotin A. M., Skinn KL, Danilov YP Non-invasive neuromodulation to improve gait in chronic multiple sclerosis: a randomized double blind controlled pilot trial // Journal of NeuroEngineering and Rehabilitation. 2014. P. 11-79).

« The method of neurorehabilitation is based on the activation, first of all, of the structures of the brain stem and cerebellum, by means of electrical stimulation of the anterior surface of the tongue. According to literary data, about 20–25 thousand neural fibers deliver nerve impulses from the anterior surface of the tongue (stimulation area about 7.5 cm) to the brain stem.

The principle of the device is based on brain neuroplasticity. The front surface of the tongue is unique. It contains the epithelium, relatively thin in comparison with the skin, 300–400 microns thick, saturated with various types of receptors, as well as a zone with free nerve endings located in the depths. This zone with the maximum density of mechanoreceptors has a minimum two-point discrimination threshold: 0.5 – 1 mm for mechanical stimulation and 0.25 – 0.5 mm for electrical stimulation. The two main nerves from the tip of the tongue provide information flows directly into the brain stem, activating the complex of nuclei of the trigeminal nerve, which travel from the spinal cord to the middle. Nearby is the solitary nucleus, here the reticular formation of the brain stem and 3 pairs of legs of the cerebellum.

As is known, this zone of the brain stem has a large accumulation of nuclei, half of which are responsible for the autonomous regulation of blood circulation and respiration, and the second half – for sensorimotor regulation. Intensive rhythmic stimulation of neurons leads to a corresponding activation of synaptic contacts and axons, including the entire complex of pre- and postsynaptic neurochemical mechanisms. Stimulation from the Pons device enhances the brain’s innate ability to enhance its function.

The purpose of stimulation: to restore motor function or to teach new motor skills.

Combining brain activation with targeted physical training aimed at restoring a lost function or teaching new skills, like cerebral palsy in children who cannot sit, stand, walk, may activate the nerve pathways directly associated with locomotor function

(Kaczmarek, KA The tongue display unit for electrotactile spatiotemporal pattern presentation // Scientia Iranica D. 2011. Vol. 18. P. 1476-1485).

https://www.sciencedirect.com/science/article/pii/S1026309811001702

blog “Brain injury hope for parents”

My blog  » Brain injury hope for parents  »

My blog was created for parents who are searching for advice and testimonials about alternatives therapies for children’s with neurological conditions. I am absolutely for mainstream medicine I am using mainstream interventions for my son as well as alternatives therapies. Just here I am talking more about alternatives not yet recognized therapies.

I am :Svetlana

Mother of Marc

Anoxic brain injury January 2016 at age 4 years 2 months ( Before his accident, he developed normally without any problems. A simple cardiogram could show his WPW But he made 2% of the population « asymptomatic », not jugged enough % for medicine to check every child ekg at birth?)

Cause of injury: (sudden cardiac death -resuscitated- asymptomatic not diagnosed WPW Wolf Parkinson Wright syndrome before his heart stoped)

More than 5 years ago my friend from USA started an online closed support group on Facebook for HBOT called “HBOT for Pediatric Neurological Conditions ”.  She asked me to be admin of group it’s happened that she afterwards « gave » me the administration of this group. Naw group become big ( more than 1800 members) parents and professionals from hbot field.

https://m.facebook.com/groups/1834837990132052

For the first time since Marc Anoxic Brain Injury , I no longer felt alone.  I have other parents that can relate to how I feel, what is going on with my son Marc and they quite simply just “get it”.

So as well as on hbot fb page here on my blog I will welcome professionals to join my blog and share their knowledge. I will welcome parents testimonials for alternatives therapies they tried for their children’s .

And all my articles will be based on our personal experience ( for my son treatments we did) as well as on scientific studies I take in account in order to make a choice for therapies applied on rehabilitation program of my son.

So my blog is for parents with brain injured children’s.

I welcome professionals to join my blog and share their knowledge. But they have to be respectful with parents: I want you to know Doctors, that we: parents can’t just “get over brain injury”….and we just can’t accept that “nothing can be done to fix it ( the brain) especially when we see some promising researches in order to “ fix it” but not recognized and so not applied in mainstream medicine….We would love to move on in life as if our child didn’t have a brain injury.  We would love to go back to that carefree attitude, a life where this horrible nightmare never happened.  Unfortunately this is our reality.  Our entire world revolves around brain injury.  We talk about it in hopes that you or your families will never have to go through what we have.

I want you to know that sometimes the things you say to make parents of injured child feel better only make them feel worse! Please don’t say “God only gives us what we can handle”, “I don’t know how you do it”, “I could never do that”, “pray harder”, “everything happens for a reason” or anything along those lines and please don’t juge parents fir whatever they doing to help their children’s.

I believe that it is not God’s will to allow my child to suffer from anoxic brain injury.  I have to believe that sometimes bad things just happen.  And I believe that for him it’s because mainstream medicine not doing cardiogramme (ECG) for all children’s at birth … doctors ask yourself haw many children’s per year injured in mainstream medical procedures and operations?

So at the same time, if you were in my shoes you would find a way to make it work too…..We have no choice and neither would you.  It’s ok if you don’t know what to say to parents. I appreciate the honesty.

Doctors I want you to know that parents refuse to settle for their brain injured children’s even when medical professionals are asking them to.  Doctors, nurses, therapists, surgeons and alike can offer their medical opinion here on my blog but that doesn’t mean that i and others parents have to agree.  Remember, at one point we ( parents of brain injured children’s) were told our child wouldn’t make it and they did.  We were told that our child would never walk, talk, eat etc and most of our children do.   So when we are being asking to settle for our child, we just won’t.  If i settled in the first place, my son most likely wouldn’t be here where he is today.  I want my child to have the best life possible! If I can help some parents on my way to helping him so they are welcome to my blog….

I want you to know all parents of brain injured children’s worry A LOT.  I am worry when my son sleeps ….Will he die overnight in his sleep from his heart syndrome ( even if we have confirmation from Rythmologue that his 5th ablation o WPW was sucsessful) during I was sleeping?

How do I prove and collaborate with the school system so my child gets the appropriate education with the right accommodations?  And if by administration this accommodations will be denied?

How to I protect my child from the cruel world who wants to judge him?

My son is a survivor of anoxic brain injury ( statistically 4% survival rate from out of hospital cardiac arrest and from all this survivals 12% only not in végétative state like my son). And I am convinced HBOT was for him a big help! Me and my husband we are a survivors as well….We have seen things that no parent should ever see.  We have heard things that haunt us daily from mainstream doctors !

I really hope that you never have to experience watching your child suffer from any type of brain injury but should it happen, know that there are other parents just like you. And that you are welcome on my blog.

Svetlana

Mother of Marc

En français:

En français:

Mon blog a été créé pour les parents qui recherchent des conseils et des témoignages sur les thérapies alternatives pour les enfants souffrant des troubles neurologiques.

Je suis: Svetlana

Mère de Marc

Anoxie cérébrale janvier 2016 à l’âge de 4 ans 2 mois son cœur c’est arrêtait ( Avant son accident, il développait normalement sans problème Un simple cardiogramme pouvait montrer son WPW Mais il fait 2% de la population « asymptomatique », c’est trop petit % pour que la médecine conventionnelle vérifie chaque enfant cardiogramme à la naissance?)

Cause de son anoxie: (mort subite cardiaque -réanimé – asymptomatique WPW-non diagnostiquée Syndrome de WPW Wolf Parkinson Wright avant que son cœur s’arrêt)

Il y a plus de 5 ans, mon ami des États-Unis a lancé un groupe de soutien fermé en ligne sur Facebook pour l’OHB appelé «HBOT for Pediatric Neurological Conditions». Elle m’a demandé d’être administrateur du groupe et au fil des années c’est arrivé qu’elle m’a «ensuite» donné l’administration de ce groupe complètement… oui group est en Anglais. Maintenant groupe est devenue assez grand (plus de 1800 membres) parents et professionnels de hbot ( thérapie Hyperbare).

https://m.facebook.com/groups/1834837990132052

Pour la première fois depuis acsident de Marc, je ne me suis sentais plus seul. J’ai d’autres parents qui peuvent témoigner même sentiment que je ressens, tout simplement on se «comprends » entres les parents comme ça….

Donc, ainsi que sur la page hbot de Facebook ici sur mon blog, je vais accueillir des professionnels pour rejoindre mon blog et partager leurs connaissances. J’accueillerai des témoignages de parents pour des thérapies alternatives qu’ils ont essayées pour leurs enfants.

Et tous mes articles seront basés sur notre expérience personnelle (pour les traitements alternatives non reconnus que nous avons faite notre fils) ainsi que sur des études scientifiques que je prends en compte afin de faire un choix de thérapies que j’ai appliquées au programme de réhabilitation de notre fils.

Donc, mon blog est pour les parents ayant des enfants avec les dommages au cerveau.

Je souhaite la bienvenue aux professionnels pour rejoindre mon blog et partager leurs connaissances. Mais ils doivent être respectueux avec les parents: je veux que les médecins saches que on peu pas simplement « accepter des lésions cérébrales » … et nous ne pouvons pas accepter que « rien ne peut être fait pour réparation le cerveau » surtout quand nous voyons des recherches prometteuses pour ca ….mais pas reconnues et donc pas appliquées dans la médecine traditionnelle …. Nous aimerions continuer dans la vie comme si notre enfant n’avait pas de lésion cérébrale. Nous aimerions revenir à cette attitude insouciante, une vie où cet horrible cauchemar n’est jamais arrivé. Malheureusement, c’est notre réalité. Notre monde entier tourne autour des lésions cérébrales. Nous en parlons dans l’espoir que vous ou vos familles n’auriez jamais à passer par ce que nous avons passé.

Je veux que vous -médecins -sachiez que parfois les choses que vous dites aux parents ne font que aggraver notre situation. Svpl : ne dites pas des banalités comme : « Dieu ne nous donne que ce que nous pouvons gérer », ou « Je ne sais pas comment vous faites », ou « Je ne pourrais jamais faire ça », « Priez plus fort », « Tout arrive pour une raison » ou quoi que ce soit, ne jugez pas les parents, quoi qu’ils fassent pour aider leurs enfants!

Je crois que ce n’est pas la volonté de Dieu de permettre à mon enfant de souffrir d’une lésion cérébrale anoxique. Je dois croire que parfois de mauvaises choses arrivent. Et je crois que pour lui c’est parce que la médecine conventionnelle ne fait pas de cardiogramme (ECG) pour tous les enfants à la naissance … son anoxie a pu être évité si on a fait ça !

Le médecins doit se poser le question : combien d’enfants par an ont un accident dans cadre d’un procédures et opérations médicales courantes et reconnu ?

Donc, si vous étiez à ma place, vous trouveriez que se limiter que au moyenne «  reconnus » mais qui donne aucune espoir c’est pas reasonable . Et que élargir ses recherches au sciences et pas juste expérience médicale @ reconnu » est reasonable et logic. Nous n’avons pas le choix. C’est bon si vous ne savez pas quoi dire aux parents. J’apprécie l’honnêteté des médecins.

Médecins Je veux que vous sachiez que les parents refusent de se contenter que leurs enfants avec dommages cérébraux doit être just maintenu « confortable » avec soins de confort, sans espoir de progrès : même lorsque les professionnels de la santé le leur demandent. Médecins, infirmières, thérapeutes, chirurgiens et autres peuvent offrir leur opinion médicale ici sur mon blog, mais cela ne signifie pas que moi et d’autres parents doivent être d’accord sur votre point de vue. Rappelez-vous, à un moment tout les parents d’enfants avec dommages cérébraux ont été dit QUE notre enfant ne le ferait jamais et ils l’ont fait! Contre toutes prédictions des médecins….

Donc, quand medecin nous demand de nous contenter contant avec niveau de notre enfant, nous ne le ferons pas….Si je acceptais en premier lieu en 2016 à l’hôpital les conseil pareils mon fils ne serait probablement pas là où il est aujourd’hui.

Je veux que mon enfant ait la meilleure vie possible! Si je peux aider certains parents sur le chemin, ils sont les bienvenus sur mon blog …

Svetlana

Maman de Marc