I, Willem Grooff, born 25-04-1950 in Amsterdam, The Netherlands, am writing this testimonial with the intention to share my experiences with the (to me) incredibly beneficial Electro Stimulation Therapy, used as a treatment for my Hereditary Neuro Muscular Disease (HNMS type I, Syndrome of Charcot Marie Tooth) by Mr. Wong Yoke Seng in Singapore as from April 2009 till present.
Prior to providing my conditional history in Annex I, it seems right to firstly provide the arguments that lead to my conclusion that I really need to make this testimonial. Such in the high hope it will benefit at least some of the patients suffering from my type of diseases. I am convinced of the fact that my experience may hold at least some hope to somebody. I do realize the sensitivity of selling hope.
Although all of my life I have been badly affected by my condition, I have only been diagnosed when I was over 50 years old. By then, everything (back to my earliest childhood) fell in place. My treating Neurologist (Dr. Vroon, Havenziekenhuis Rotterdam, now retired) and Revalidation Doctor (Dr. Van Houten, St. Franciscus Hospital Rotterdam) could only agree with the fact that it has been my luck that my disease was unknown in my youth. I have always been able to live a very active working life as a seafarer in (mostly) tropical countries. Temperatures and forced intensive labour have been reasons for my system to develop as much as possible. After my seafaring career, I have been able to work as ship visitor for many years in another tropical country, Singapore. Especially the great distances of walking the ports of Singapore in the hot sun and the climbing of the largest vessels every day seem to have kept my body going. The typical tiredness of my condition could always be compensated by taking the necessary breaks due the absence of fixed working hours. After being recalled to the office around the year 2000, things got worse rather quickly and by 2006, I was no longer able to perform in a reasonable way. In December 2008 I have been qualified to be “disabled 80-100%. The situation being as follows:
I was able to walk (with orthopaedic shoes) not more than 50 metres and not able to stand still for even 5 seconds. Hands and feet were totally numb and the right foot was lame. The general signs of CMT (muscle decay in hands, feet and lower limbs, heavily bent back, storch legs) ware all clearly present for many years. In accordance with employers, medics and UWV (insurance) a trial for my placement Singapore was worked out in order to at least keep me going for a while. Again, the benefits of heat and movement were the ideas behind that. Just as the lack of force and energy seemed to wreck this set-up, I was introduced by a friend to Mr. Wong Yoke Seng. This was in April 2009, shortly after I visited Dr. Kamal Verma, Senior Neurologist of Tan Tock Seng Hospital with the question if there would be any connection of Western Medicine and TCM within the field of Neurology and my kind of diseases. The answer was no and we left it with that single visit. I am pretty sure Dr. Kamal Verma will be shocked if he saw me again.
I entered Mr. Wong’s therapy centre as I did Dr. Kamal Verma’s treatment room: supported by my wife and my friend. This because of my lack of balance. Right after googling more information about my specific disease, we started the treatment with Mr. Wong’s own developed equipment. Looking back after 5 years, especially the results in the beginning (of then very intensive treatment) are stunning. Typical for my condition was that because of the bad performance of the nerves, my pain barrier on the lower limbs were very high and extreme (compared to other patients) currents could be used. In my personal opinion (doctors tend to know, but patients feel) this could be part of the explanation of the plain miracle that I have experienced over the last five years: a stabilization where there could be none and clearly some recovery condition and even muscle tissue, where none would be expected. Already after several treatments, the sensitivity in the fingertips returned and I could feel warm and cold again. It is great to start feeling the tackles of your keyboard and the strings of your guitar again! For about a year, every week again I felt a bit stronger and more secure on my feet than the week before and in the end I was able to walk larger distances. It may be clear that the “misprint” causing my disease was not affected, but the effects of the disease clearly were. I still experience the tiredness, but there is no comparison to the “before” situation. After about a year, my balance got better and with that I was able to move around more and more. By now, I seem (although I am not and will never be) to be a normal healthy person, especially in the first hours of the morning. The nerve system cannot take the higher currents anymore, which in itself is significant. Treatment with lower currents is still giving the same results and the revival of the beginning of the therapy seems to last. I do look something like a healthy person most of the time now, whilst 4 years ago I really had a zombie-like appearance. My feet have lost most of the claw-like aspect and my back is far less bent than before. Apart from the fact that all these remarkable (to the observer) things are clearly seen by everyone who knows me, there is also the impression of my Revalidation Doctor (Dr. Van Houten) who has seen me back after 4 years. Her statement (on my request) was: I have seen this patient back after 4 years and observed an unexpected stabilisation with even some muscle re-development. Apart from this neutral professional statement the surprise was obvious.
In general, everybody agrees to the fact that there has been a surprising “revival”. This already after 8 months of treatment, when I walk back in to my Rotterdam office. None of my colleagues could believe what they saw coming back after only one year. In my opinion, this Electro Stimulation Method might considered to be able to “boost” the body reserves (if present) and as in the case of my Type I disease the nerve and muscle tissue is still present and only “dormant”, the therapy seems to have the power to boost the cells to start performing again on a higher level. Apart from the obvious (and measurable) benefit of a stimulation of the blood flow, the stronger current surpasses the currents that the body uses to keep the nerve/muscle system going and makes the connection where the CMT invaded body has no ability to do that. In the five years that I have been happy to be very close to Mr. Wong Yoke Seng and his Centre, I have seen many great results and I have spoken to many grateful patients with very interesting stories.
Remarkable is that all of these patients were/are suffering from very diverse diseases/conditions, me being the only CMT patient so far.
I walked in to Mr. Wong Yoke Seng’s centre with a clear mind and no other intention or hope to do a favour to my friend who desperately wanted to go on searching for ways to help me. By that time, I fully accepted my situation and was ready to face whatever further disadvantage my condition would bring. All this has changed by now and I am assured of the fact that there are at least some patients like me around that can benefit from therapies like the one Mr. Wong Yoke Seng has developed. The more remarkable is my case is, that even if I am not able to receive my therapy as regular as before, my system seems not (yet) to be weakening.
One last remark I would like to make: The thing that really bothers me, is that apart from the people who have seen me 5 years ago, nobody really believes that something like this is possible. The (UK) Organisation for CMT patients dismissed my suggestion just to come and look what is happening in Singapore and to listen to my story as nonsense. The comment: “electro stimulation has been tried many times and it holds no possibilities”. In my opinion, anything that gives even the slightest indication of improvement of any condition is at least worth looking at. Therefore, I do hope from the bottom of my heart, that something good can come out of this testimonial.
Rotterdam, 8 March 2014
The signs of muscle weakness already showed in early childhood. I was never able to perform on sports and gymnastics as other children did, but always tried to keep pace. Although it clearly showed that “something” was wrong, in the early fifties no doctor was able to recognize my condition. Wooden blocks inside my shoes at the age of 4 were as painful to me as to everyone who observed my. My old Professor Family Doctor kept the helpful medics from breaking my feet to see if I would learn how to walk in a proper manner. “He more or less walks now and you do not know if he will walk afterwards”. Luckily, my mother listened to that advice from Professor Verburgh, to whom I am grateful.
Writing this I googled the name of the very famous Doctor that according to my mother has examined me in my earliest youth and came to the conclusion that one possibility could be that the stomach muscles did not connect and therefore there was no control on the lower muscles. Indeed, and more or less to my surprise today, Dr. Fideldij Dop has been a very famous Children’s Doctor in the early fifties in Amsterdam. As the first publication on CMT has been seen in 1965, he may have seen me a dozen of years too early. He has become very famous later on, but this shows how conditions like mine were looked at before Neurologists were around.
In my early years, I was not able to properly play with the other children, as they pitied me for falling down every few steps. Until my 13th year, I have not been able to run without falling, a problem that still occurred occasionally when I was an adult. No way I could climb ropes or even properly hold my pen at school, something that in the early fifties was considered something next to a crime. Luckily, much was compensated by a quiet clear and a big mouth. I managed to still play soccer every day and together with a very active working life as a seafarer later on, that has been my rescue.
I entered the Netherlands’ Royal Navy when I was 16 years old and by then I was already commented because of my (typical CMT) claw feet, storch legs and bent back, but nobody knew how to place that in a specific condition. The first publication on CMT dates from that period, in fact from one year earlier. The Examination Doctor let me pass, although he was called in by the nurse who was alarmed by the form of my feet. His comment: “no worries, we need brains and not feet.” My luck again. By then, I already had a near to lame foot (without realizing it, which may sound strange) and walked like a drunk. I was not able to take a step when carrying a heavy load, due to the lack of foot muscles. I did not really pay attention to those things, but much to my surprise everybody else did. I was often asked if I were OK by complete strangers and I did not really understand why. I have never been able to walk on tiptoe, have never been able to move my toes, have never been able to stand on one foot, and never realized that everybody else could do those things. I always tried to do sports and build muscle, but it never worked out. I stayed thin and weak.
In my sailing years (1966-1990) I maintained an acceptable condition by working very hard as a ship’s officer up to the Captain’s level. I generally ran around for very long hours every day, something that must have been beneficial to my condition. My luck again was that I have always been working in tropical countries, which must have helped my system to stabilize. I was still young enough to keep on going and only after my 35th year troubles started.
Because of the fact that I had lost all feeling in my feet and the lack of a real pain impulse, I did a lot of damage by working too long hours and not getting out of my shoes in time. When I did, my feet were generally a bloody mess, which lead to more and more serious infections as wounds that had no time to heal. I stopped sailing in 1990 because of that when and started working for the seamen’s union.
The good thing (luck again) here was my placing in Singapore for many years with a lot of daily walking and climbing ships in combination with high temperatures. My condition detoriated quickly after I was placed back in office in 2002. Because of the low stress job and the good conditions (heat) it was agreed between myself, Doctors and Employer to try and let me perform at a very low level in our (especially for me) re-opened one person Singapore Office. My ultimate luck after that: a few months later I met Mr. Wong Yoke Seng, who was busy developing an (to me) astonishing therapy.