アーカイブ | 2019年8月4日

Tokuko Got An Interview! – Part 2


 

👇  Here is Part 1 of the interview! 👇 Please read this first. 

Tokuko Got An Interview! – Part 1

Tokuko Got An Interview – Part 1  👈CLICK HERE!

 

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                                  – Tokuko Got An Intervew –  Part 2 – 

 

MARLENE: Your blog has 5 categories:  MY Tweets, Travels, TSW & Atopic DermatitisSpiritual Posts, and Posts in English.  Recently, you have felt deep concern over the high suicide rate in Japan.  Have you tried to address this in your blog?

 

TOKUKO:  Yes, I have done it and the article also was a big hit and was shared by many.  We have a culture like “Being modest and quiet is beauty.” so typical Japanese don’t voice so often and tend to have stress for that.  Stress causes various kinds of sickness so I try to encourage my blog readers to let them feel uplifted.

 

I have many more readers in Japan than foreign countries and I add various kinds of topics in Japanese since Japanese is my first language.  The majority of popular topics are my unique mindsets to live happily, encouragement like self-development and TSW & atopic dermatitis
I certainly try to get a positive message out on my English site, too.  I think the most healing takes place when the spirits are positive and people move on from isolation.

 

 

MARLENE:  You have developed a strong relationship with all the Japanese NMT doctors, but of course, you have the most contact with the extremely busy Dr. Sato.  What can you tell us about his work?

 

TOKUKO:   I think Dr. Sato chose to see both inpatients and outpatients but not being a clinic doctor to see outpatients only for a few minutes once a few months or so.  I believe his choice gave this doctor’s eyes more excellent diagnostic capability but not only his natural talent and effortsHis diagnosis and advice are always AMAZINGLY accurate

 

For example, when he says ‘4 days.’ to see a patient’s specific part, the flare disappears 4 days later

If he said ‘7 days.’ you’d see it clears up 7 days later definitely

When he gives a direction like, “Diminish water to 1100 ml.” the patient gets amazingly well so quickly

When he says, You have done XXXXX, haven’t you?” the patient is surprised and confesses, “Yes, as a matter of fact, I did.”…lol

 

His eyes are a miracle and patients always run across such scenes in the hospital.  There’s no doubt he realized the condition of TSW long time ago and found the great method more than 30 years ago.

 

He runs free big lecture meetings all over Japan, provides free classes in the hospital, gives training/lessons for other doctors who are interested in NMT, gives advice for questions from patients who he doesn’t know on the website (in Japanese) without a fee, etc. etc.  His dedication for patients is unbelievable.

 

 

MARLENE:  What does a day in the life of Dr. Sato look like.  Can you tell us in your own words?

Many of Dr. Sato’s healed patients all over Japan gave him a gift with collage pics of used-to-be inpatients. Everybody loves him! Look at his warm smile!

 

TOKUKO:  Dr. Sato shows up in the hospital early in the morning.  After inpatients have finished breakfast, he sees us one by one and gives us very appropriate advice.  Then, he sees outpatients.  The reception closes the day’s appointments in the morning but he sees so many outpatients from all over Japan until evening and sometimes until late at night.

 

Then after he finished to see all of them, he checks all of the clinical records including young doctors’ ones.  He has so many things to do taking care of MANY patients.  Late at night, we sometimes see him sitting in front of the computer to complete things.

 

After that, he sometimes responds to the Japanese Q & A site that I mentioned earlier and answers questions for patients he doesn’t even know.  He doesn’t charge for this.  Dr. Mitsuko Satou (NMT super pediatrician) gives advice there too.  The site has a lot of people’s access and we can get helpful information there.  Usually, next morning, inpatients find their work and say, “Guess what?  Dr. Sato answered some questions after midnight yesterday too…When does he sleep?”

 

And every two or three weeks, he provides NMT classes for inpatients after dinner, actually at night.  It is VERY helpful and we learn what we have to do or what we shouldn’t do.  I post it in my blog in Japanese.  He teaches us about skin too so we get much knowledge at the classes.  During the classes, he sometimes sees inpatients again per inpatients’ request though he already saw us in the morning.  He memorizes each inpatients’ symptom and gives very appropriate advice.  We patients merrily wait in line to be seen by him again because it is fun to talk to him. 

As you also wondered already, patients always wonder “When does Dr. Sato have his meals?…His days are such hectic.

On weekends, a lot of patients say, “Awww….weekend again….I don’t know if I can get through it without Dr. Sato!”  All the inpatients love him so much.

Dr. Sato’s favorite food, ‘Yakisoba Noodle’. He might eat up three plates as long as it is this size…??? (=standard size)…lol

 

One day, while I was in the hospital, finally, my horrible affected part dried up completely and I was very happy for that.  I showed off the part proudly to him at the night class. 

To see it at one glance, he said, “You will scratch it tonight definitely.😙” ….It was so funny for me. 🤣

I said, “Nooooo!!!  Dr. Sato!  It took a looong time to dry up and I finally reached this phase😬.  Definitely, I won’t scratch tonight!” (^o^)o

Then he goes,  “Nope.  You can’t control it.  You’ll scratch it definitely.😎”, then I go, “Noooo!  I won’t!….”, then he goes, “Yes, you will scratch🤪.”, then I go, “Nope!  I won’t.”….we exchanged such funny conversation.

 

Ahen…well….I DID scratch the part at the night and all the thick crusts came off…LOL!

It was uncontrollable though it is my body…He says things as if he can foresee everything and it is always right.

 

Also, since mental status affects to our symptoms very much, Dr. Sato cares about it for each inpatients and notices each one’s mental status exquisitely.  Yes, he notices everything…lol  I’ve heard he has spent his time even for one hour to listen to a patient who feels down at night though he is super busy!  He lavishes his time on helping patients.  Of course, the patient’s symptom increased rapidly after that.

 

 

Most of TSW inpatients are discharged around 45 days usually and 90 days at the longest from the hospital.  We cannot stay longer than 3 months in Japan.  I was the longest inpatient that stayed. (for about 3 months)

It was amazing to see inpatients who are leaving because all of them look like a normal people!

 

 

MARLENE: It seems like there is a lot of hero worship going on in his patient community.  Can you tell us details of Dr. Sato’s professional history regarding his teaching of NMT?

 

TOKUKO:  Please refer the followings.

 

 

📂Dr. Sato presented a paper that No Moisturizing Treatment was effective for TSW (Topical Steroid Withdrawal) in 1994.
 
【Atopic Dermatitis and Dermatopathy Induced by Topical Steroids; The Appropriate Treatment and the Information of the medication】 – By Dr. Kenji Sato
 
The Informed Prescriber 1994;9:31-34(in Japanese)
 
📂Then, he announced statistical data of NMT in 1996.
 
【Withdrawal of Topical Steroids for the treatment of severe “Adult-type” atopic dermatitis】; Skin Research 1996;38:440-447 (in Japanese, English summary) – By Dr. Kenji Sato, Dr. Hironori Minami and 3 other doctors.
 
In the summary, it states as follows;
 
—-The skin symptoms exacerbated, and reached to the peak on average seven days later, then gradually subsided in a month. At this time, the use of the nonsteroidal agents was stopped, and exacerbation restarted, reaching to the peak in about 5 days, followed by slow improvement for about one and a half month.—-
 
📂Also, as for the problem of the use of topical steroids for atopic dermatitis had been explained already in his medical paper in 1985.  Dr. Sato had already recognized the condition then.  He was providing non-steroidal treatment already at that time.
 
【Transition of Incidence of Steroid-induced Dermatitis from 1979 to 1984】; – By Dr. Kenji Sato and Dr. Naoko Mizukoshi
 
Skin Research, 1985; 27: 1166-71
 
 
 

 

📂 Published ‘Treatment Derived from Clinical Observation of Prolonged Adult Atopic Dermatitis Patients – No Steroidal and No Moisturizing Treatment‘ (in Japanese) – 2008

📂 Published ‘Say No to Steroids – Treatment of Atopic Dermatitis for Babies and Children‘ (in Japanese) – 2010 by Dr. Kenji Sato & Dr. Mitsuko Sato

📂 Published ‘New Edition: Treatment Derived from Clinical Observation of Prolonged Adult Atopic Dermatitis Patients – No Steroidal and No Moisturizing Treatment‘ (in Japanese) – 2015

 

by Dr. Kenji Sato

by Dr. Kenji Sato/Dr. Mitsuko Satou

 

 

 

 

 

 

 

 

 

MARLENE: Is Dr. Sato active in other Professional Groups?

 

TOKUKO: Dr. Sato has lecture meetings very often.  He travels all over Japan with other NMT doctors on weekends and Japanese national holidays to have very big meetings with them.  The meetings are usually free even though they are very expensive to organize, I guess.  Recently, I attended a conference along with other NMT doctors.  It was well attended by adult patients, parents and even some dermatologists.

 

 

MARLENE:  I understand that Dr. Kenji Sato and Dr. Mitsuko Satou are members of the Education group.  This shows great respect for your work disseminating NMT information.

 

TOKUKO:  Yes, they are VERY supportive to help group members and are always thinking about TSW sufferers who they even have never met.  When I have questions for group members, they help me a lot.  To avoid confusion, they have approved our group as the official site of NMT and are trying to monitor as much as possible so group members can trust the information that we provide.  Translating medical things is very difficult for me but when my translation is not applicable, Dr. Sato always gives me an advice how to express it.  It is blessing!

 

Also, I see all the NMT doctors at conferences, meetings and parties, and at the same time, hear from many of Dr. Sato’s patients and supporters.  It is always a learning experience for me. 

 

 

Well, I recently added Dr. Mitsuko Satou‘s work with babies and children to my blog.  To see her long experience where she healed tons of babies and children without TS, I feel like it is urgent to spread her theory to the world.  It is really amazing.  Hope as many as parents take her words. 

She refers severe pediatric cases to Hannan Chuo Hospital.  The children are treated in the children’s ward, but seen by Dr. Kenji Sato. 

 

Believe it or not, children and babies get well once parents accept Dr. Mitsuko Satou’s words.  Her theory comes from her approximate 50 years’ experience as a pediatrician and is amazing.

 

 

MARLENE:  How much time do you spend on NMT work?

 

TOKUKOMy laptop remains on my lap all day long on weekends.  On Friday night to Sunday, I usually work 10 hrs a day on NMT because it is not only the blog but Facebook groups, conferences, supporting lecture meetings, etc…etc… 

My older son does chores for my activity so he also is a great supporter.  From his experience to see his mother’s super severe TSW symptoms, he really hopes no one would have such experiences any more in the world.  My younger son also encourages me very much.

 

 

MARLENE:  As well, you run some Japanese sites.  It must be a pleasure for you to answer questions in your first language.  What are the cultural differences?

 

TOKUKO:  Japanese is very unique.  We are born and raised in islands country so our culture and customs are different from others.  Good part is, we esteem peaceful resolution.  Bad part is, we don’t voice so much….lol  To spread the word, I feel more difficulty with disseminating NMT protocol in Japan than foreign countries.   

Still, Dr. Sato’s supporters are glad to work for that and help other sufferers spontaneously.  They are amazing people.

 

Because of our group-oriented culture, once you request to not do it, Japanese members don’t do it and vice versa.  So Japanese sites that I run don’t get questions but I receive questions personally via SNS after all…lol  I’m trying to help them too as much as possible and it is way too easier for me because it is my language. 

Of course, our situation in Japan is the same with foreign countries, I mean, it’s REALLY hard to find out non-steroidal doctors here too.

 

 

 

MARLENE:  You have many readers in both Japanese and English.  Your post called ‘A Message for the Parents with Atopic Dermatitis Children From A Used to be Mummy BabyA message for the Parents with Atopic Dermatitis Children From A Used-To-Be Mummy Baby  really resonated with many readers.  Why do you think this made many people cry?

 

A Message for the Parents with Atopic Dermatitis Children, From A Used-To-Be Mummy Baby

 

TOKUKO:  People were intrigued by my personal journey.  Actually, they say many mothers were touched very deeply by this article and it continues to be very popular in Japan. 

 

One mother who works on supporting TSW kids and babies sent me a message that she cried loudly when she read my journey and admitted reading it many times.  She was encouraged by the thought that it was not the parents’ fault and so they should not feel guilty about using topical steroids on their children.  Hope many more people have an opportunity to read it.

 

 

MARLENE:  You have many warriors.  A couple of months ago, Ahmed Hamadi, published a French set of notes of your blog.  Then, they were published in English.  These notes were very valuable, and the NMT sites were swamped with questions about Dr. Sato’s Protocol – especially food.  Do you still get questions about food and allergies?

 

Thinking about nutritional balance, Tokuko is busy for eating?  Obviously too much….lol

TOKUKO:  Yes, I do.  But Dr. Sato and the other NMT doctors agree that a healthy diet is important and that lots of protein and lipids should be included.  The warning to avoid licorice in foods or drinks that contain one of licorice byproducts is important.  Also,  common sense about your allergies before TSW/NMT should be honored.  Nutritional balance is crucial to grow new skin and rebuild body strength.

 

 

 

MARLENE:  The other big question that is asked repeatedly is about water restriction.  You talk about how important it is in the hospital and how everyone is cooperative because they want to get out quickly.  What are your suggestions for water restriction when it is implemented in the home?

 

TOKUKO:  I believe that Dr. Sato’s guidelines should be followed as closely as possible for faster healing.  However, babies and small children (under 6),  breastfeeding mothers and persons with medical issues, etc…should all be cautious and everyone, when necessary, be under a doctor’s supervision.

 

 

 

MARLENE:  There are many lists of key parts of the protocol.  What would your suggestion to people starting NMT?

 

TOKUKO:  People trying NMT should read as much as they can: my blog, my Education site using the search bar, make personal notes, and establish a list for yourself to get started:

 

Dr. Kenji Sato’s List

From my experience, the causes which make TSW symptoms long and severe are the followings;

  1. long term and/or stronger steroid use
  2. use of tacrolimus -protopic steroids
  3. use of moisturizers after stopping topical steroids
  4. frequent and long bath and/or shower
  5. drinking of large amount of liquid, drinking liquid during night
  6. wash out exudate and/or scrape off crust
  7. insufficient intake of protein and lipid. (Need to look up)
  8. bed rest during the day time
  9. insufficient amount of exercise
  10. be told not to scratch
  11. poor management of psychological stress
  12. Subjective assessment of signs (itch, pain etc) and no objective assessment of symptoms (erosion, red, brown, white, exudate, crust, etc )

                                              – Kenji Sato

 

Dr. Sato says “NMT is unbelievable but it works.

 

MARLENE:  On behalf of the NMT community, I would like to thank you for all the work you do to help Topical Steroid Withdrawal (TSW) sufferers.  Dr. Kenji Sato and the other NMT doctors must be very grateful to you for supporting their work.  

Thank you also for your insights into the amazing Dr. Kenji Sato and his team of followers.  

 

 

<<Interviewer’s Note>>

IN APPRECIATION to International Topical Steroid Withdrawal Association (ITSAN) where Tom and Marlene Bell found Tokuko’s blog & Dr. Kenji Sato discoverer of NMT> It is because of their (No Moisturizing Treatment) NMT work that we are able to celebrate….our 60th anniversary August 1, 1959 – 21,915 days

(NMT) Dec. 3 2018-April 2019 
Tom has healed at 85 years old.

*WORDS CANNOT DESCRIBE HOW GRATEFUL WE FEEL.

                                                     – Marlene Diana Bell –

 

 

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<<Tokuko’s Note>>

 

It was a great experience to get an interview with this amazing lady, Marlene.

As a caregiver, she had been helping her husband, Tom, and then, after his healing with NMT, she started to pay it forward.  Her dedication to the community is outstanding and Tom’s cooperation also is blessing!  They keep encouraging sufferers.  She is like a mother in NMT family.  I don’t know how to thank her for her assistance and love to TSW sufferers in the world.

 

From the bottom of my heart, congratulations on your 60th Anniversary, Marlene and Tom!  I’m proud of you and feel very lucky to be able to celebrate the best couple’s special day resuming healthy life!

Tokuko

 

 

 

 

 

#Tokuko’s Room To Feel Uplifted  #tokukosroomtofeeluplifted  #NMT  #TSW  #No Moisturizing Treatment


Tokuko Got An Interview! – Part 1


 

I got an interview with Ms Marlene Diana Bell who works for disseminating NMT (No Moisturizing Treatment) protocol for TSW (Topical Steroid Withdrawal) sufferers from Canada to the world. 

 

Her husband, Tom, had a severe reaction to steroid creams last year.  Per her explanation, he spent 9 months as an invalid – with skin (the largest organ in the body) very compromised indeed – red skin, sores, ooze, crusts, flaketorturous itch, etc… 

 

Specialists could not help, so like all desperate souls, they were doing serious Facebook search that led them to a google doctor type of cure.

 

They madly searched, searched and searched…..and finally found my blog and Dr. Kenji Sato‘s protocol, NMT, via the ITSAN (International Topical Steroid Withdrawal Association) support group.

 

They learned NMT seriously reading my blog over and over and followed Dr. Sato’s protocol strictly.  When they felt anxiety or got scared of flares, etc…they just read my blog again to make sure if they are on a right course…then, finally…Tom was healed completely within 4 months!  Significant thing is, he is in the middle of his 80s!

Tom resumed his life with NMT!  12 miles ride on his bike.  (Day 105 on NMT)

 

The following Q & A interview will give you insight into my personal experience as a patient of Dr. Kenji Sato.  He is a leading NMT dermatologist and I am one of his many healed patients. 

 

Our dream is to help disseminate the information to as many professionals and sufferers as possible.

 

 

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◆ONLINE INTERVIEW WITH TOKUKO BY MARLENE DIANA BELL◆                                      

                                                

MARLENE:  The name Tokuko comes up frequently on many sites connected with TSW (Topical Steroid Withdrawal). You are definitely a “woman of mystery!” You went into the hospital on October 5, 2015 with a very severe case of TSW that had been misdiagnosed as aggravation of atopic dermatitis.  After starting NMT (No Moisturizing Treatment), I believe that you left on December 18, 2015 with a new lease on life and a determination to share your healing with the world. 

 

The blog article How to Get Over Topical Steroid Withdrawal ASAP   How to get over Topical Steroid Withdrawal asap!  has been shared hundreds-thousands of times in Japanese and English.
(Blog ” Tokuko’s Room To Feel Uplifted: MENU【POSTS IN ENGLISH】)

 

In a letter to you dated on the 25th of November 2017, Dr. Kenji Sato expressed his thanks to you for introducing his treatment protocol.  He hoped that people all over the world suffering from topical steroid withdrawal would be helped.  Well, Tokuko, now a year and a half later, Dr. Sato’s wish has definitely come true.  It is happening because of you!!!

 

Look at the facts:  Your blog has been seen more than 260,000 times, your Education Group has over 1500 members within months after inception, and your Healed Club has over 400 members within a few months, your NMT friends who started the Q & A Support Group for NMT-TSW now have 685 members (As of 04 Aug 2019).  More and more people are asking “What is NMT?  You are not alone now – and you have acquired many warriors!  (Edit:  As of Jan 2020, numbers above grew twofold!  Amazingly fast!)

 

TOKUKO:  Well, I began to prepare the Education site a few months prior to starting it in December 2018.  It may look easy to start a group in Facebook but to utilize it as a way of sharing Dr. Sato’s protocol so accurately, it took time for me to prepare.  I wanted sufferers to use ‘NMT Education Group’  NMT (No Moisturizing Treatment) Education Group instead of their NMT text book because there are no translated ones in the world

 

As you know, Facebook is a communication tool so it was a challenge trying to change members’ vision from Q & A format to a study forum.  I needed to think deeply on how to operate it to help out sufferers efficiently by imagining various situation that might happen.  

 

You can learn NMT accurately in this official NMT site. Dr. Kenji Sato and Dr. Mitsuko Satou are great supporters of this group.

To make the group like an intensive course of NMT, it should be full of helpful information to learn and shouldn’t have the distraction of personal symptom’s continuous complaints or its Q & A or open discussion or debate

 

 

Of course, such things also are necessary sometimes for sufferers so I’m not denying them but I thought if I do the same thing with other TSW support groups, there would be no place to learn NMT seriously and intensively.  Each group has its own role so the idea to comfort and vent are also necessary but I needed to make a place to learn NMT for sufferers in need.

 

Even in the hospital, no one could master NMT overnight just reading Dr. Sato’s book but inpatients get to know it little by little receiving advice from Dr. Sato every day.  Sufferers in our group need such circumstances, I mean, they also need to learn it one step at a time getting advice sometimesThe group can provide opportunities to review each one’s knowledge and it definitely helps sufferers for faster healing because NMT should be done correctly and thoroughly.  Sufferers who try to do NMT at home definitely have to study hard and our group should be their NMT book to find out answers by themselves.

At least one Education Group is necessary to get accurate advice.”…That is my concept of starting the group.

 

 

MARLENE:  The questions and comments in the letters on your 2017 blog are the same ones that sufferers are asking today.  You have addressed them many times.  Is this why you started the NMT (No Moisturizing Treatment) Education Group?

 

TOKUKO:  Well, right after I published How to Get Over Topical Steroid Withdrawal ASAP, the article was spread to the entire world VERY rapidly…so many people started to share it one after another and the entire white world map of my blog data page was filled in color

 

The distribution map of readers of ‘Tokuko’s Room to Feel Uplifted’. Readers are all over the world except some countries in Africa and Greenland where more than 80 % are covered with eternal snow.

 

Then, approximate 2 months later, I started to receive MANY messages with appreciation from all over the world and it increased day by day.  Do you know what I mean?  Yes, a lot of TSW sufferers began to be healed or improved with the protocol They accomplished it just reading the article and followed the direction thoroughly.  And the trend is continuing, I mean, readers all over the world have been sharing it even now every day

 

At the same time, I received many questions with the pictures of their personal symptoms though I’m not a doctor…lol  Of course, I can’t diagnose!…lol  I just can share things what I learned as an experiencer

 

And also, I received other questions too continuously.  I tried to respond to everyone, for 3 digit of messages every day staying up late because I really wanted to help them.  However, there is a limit to take care of everyone in the world by myself…lol  I was extremely busy and didn’t have enough time to sleep…even if it is 2 a.m. here in Japan, people who contact me don’t know it and when I’m about to go to bed, I hear the ring of messages.  Ping…ping….ping…lol 

 

Still, I wasn’t able to ignore them because I fully know how tough the symptoms are. 😰

Sometimes, I wasn’t able to cut the conversation for sufferers who needed urgent help even if it was midnight here.  And some needed encouragement too from me…This is the other reason that I started NMT Education GroupI needed to educate everyone at one time because more than 90 % of their questions and  answers are already in blog articles

As inpatients in Hannan Chuo Hospital, we needed to learn a lot from Dr. Sato every day even though all of us read his booksSufferers who get information from my blog need a place to learn it too.

 

Since Dr. Sato’s treatment could be practiced in the home setting, and many healed sufferers on NMT post their healing journey spontaneously at other TSW support groups one after another, the membership was growing so quickly that it became impossible for me to keep up.  The fact that my improved pictures from severe symptoms within 3 months also are sensational for many sufferers so such testimonies accelerated the membership too.  In April, 3 new efficient members who mastered NMT with my blog and the education group joined as moderators to help transition from individual symptom posts to teaching posts that would encompass common questions.

 

Because of their assistance, I could focus on my role, I mean, this provided an avenue to keep readers updated on Dr. Sato’s work as well as clarify commonly asked questions.  As the transition smoothed out, it allowed me more time to make specific posts as well as work on translations of sections of Dr. Sato’s bookNew Edition: Treatment Derived from Clinical Observation of Prolonged Adult Atopic Dermatitis Patients – No Steroidal and No Moisturizing Treatment” (Japanese edition).  I feel blessed so much!

 

I started The NMT Healed Club too https://www.facebook.com/groups/NMTHealedClub/ to show the reality of NMT during the process, and to encourage people visually showing that NMT works.  The group is full of positive energy and it is good for sufferers who lost self-confidence to feel uplifted.

 

You can see a lot of healed/improved members’ pictures and reports in this group.

 

 

MARLENE:  The deleting of posts led to misunderstandings with both positive and negative comments on other sites.  How did you and your moderators respond to this criticism?

 

TOKUKO:  To think about sufferers who are in the midst of serious symptoms or in emergency like life threatening cases and those who are not good at English, we have to focus on providing appropriate and accurate info only, I mean, we have to diminish their workload to read and have to save their time.  They definitely urgently need help and we have to help them out from this agony devoting all our energy so I wanted to avoid continuous same explanations from the beginning. 

 

 

Also, staying positive is a part of NMT so I didn’t want our group to be full of complaints about personal symptoms because it affects other sufferers’ symptoms too making them feel sad.  Venting is good for the person but not good at all for all other sufferers’ symptoms.  No one feels happy to read other people’s pain.  We tend to be tied to our own tough symptoms but everybody should consider about other sufferers too even while experiencing terrible symptoms, I mean, we have to think about other sufferers in various situations precisely because we totally understand the pain.

 

It is because of these reasons, I had to organize the group to let members utilize it as a text book

There are no translated books about NMT in the world and I had no other way to disseminate the protocol except my blog and Facebook groups.  To help out each other with NMT knowledge is my ideal so when I started the group, I required agreement with our policy (with 3 initial questions) to members who requested to join us and explained to members that our operation is different from other TSW support groups

 

I posted this for NMT Education Group members to have them understand our operation and our role to help TSW sufferers.

 

I know it is irritating for some members to not be able to get an answer right away but no one can learn it overnight.  I hope group members realize that it is really great opportunity to re-read my blog articles to find out answers….because, again, more than 90 % of members’ questions are already usually explained in articles.  We tend to think we have learned things very well after we scan the information but tend to miss something important sometimes.  Members might find some other helpful information while reviewing it.

 

 

As long as you chose to accomplish NMT without having NMT doctors there, I hope you understand that such effort by yourself is required.

 

Well, to organize the group, all moderators’ work is excellent. 

When we receive the duplicated questions, they try to contact the member directly via Facebook Messenger as much as possible and explain where the answer is written so that the member could find other missing information too to read it and other members don’t need to waste their time to re-read things that they have already mastered.   Of course, if the question is new and would be helpful for others, it is reflected on the site and we’ll try to answer doing our best.     

 

When we see members’ open discussion about other methods in our group, moderators try to contact them personally because other group members might misunderstand and think that it also was a part of NMT.  To mix other methods might be dangerous sometimes.  It wouldn’t be NMT anymore and healing would take longer or could cause further aggravation. 

 

When we see someone’s post that complains about her/his symptoms, moderators try to send a message to stay present to the pain but then to delete the posts as not to affect other members’ symptoms since it is not good for others.

 

When we get a request for approval to join but if they didn’t answer required 3 questions, moderators send a message to request it with welcome package to explain about NMT as a starter. 

 

They show their journeys making videos or chronological order pictures of NMT process, etc…etc…They are amazing.  Just wonderful.  I can’t tell them how much I appreciate their dedication.

 

It is REALLY huge workload for moderators but still, they work for group members and me SO hard spending their time because they fully know how tough TSW is.  I feel gratitude for their love to other sufferers and caregivers. 

**At that time, there was no function of pending post option in Facebook Groups to select members’ posts. This is a definite improvement!**

 

 

MARLENE:  Let’s go back to the beginning and let people know a few facts about Tokuko.  Can you tell us a few details about you?

 

TOKUKO:  I have two sons and work full time during the week for DoD. (Department of Defense, the United States Air Force.) 

My oldest son is an avid NMT supporter so he willingly helps with family chores.  I think all of my time except eating, cooking and taking a bath is taken by NMT.  To be honest, it has been all consuming and stretches after work on weekdays and at least 10 hours a day on the weekend.  I only allow 3-5 hours sleep every night on weekdays because I have various kinds of activities for NMT.  It’s not only blogs and Facebook groups.

 

Oh, I’d like to apologize here that I can’t respond all of messages that I receive from all over the world every day.  I feel so sorry for them to not be able to make it in a timely manner….still, please understand that it is difficult to respond 3 digit of messages every day.  Instead, I’ll keep adding messages and information in the groups and my blog thinking about you.😊

I could not do the NMT work without my wonderful sons’ support.

 

 

MARLENE:  What about your steroid usage?  How long and how frequently did you apply topical steroid creams?

 

TOKUKO:  My topical steroid usage was for 52 years.  For 30 years, I had been using the world’s strongest steroid cream since it came on the market.  Different creams were prescribed for different parts of the body.  The strongest one was used on my fingers.  At the time, my job took me to many cities and with my fingers looking so horrible, it was easy to get steroids at any hospital.  Once creams were applied, the symptoms disappeared but quickly came backWithout the creams, it was impossible to lead an ordinary life

 

Before NMT, during severe TSW, I was also prescribed a very strong immunosuppressant, ciclosporin (cyclosporine = neoral), which is usually given before undergoing internal organ transplant operations.  I was taking it daily for months twice and the side effects were horrible.

 

 

MARLENE:  How did you get an appointment to see Dr. Kenji Sato at Hannan Chou Hospital in Osaka, Japan?

 

TOKUKO:  I was referred by a famous Japanese NMT dermatologist, Dr. Shigeki Fujisawa in Tokyo Japan.  (Dr. Fujisawa also published books of NMT in Japanese.)

I was admitted after the third attempt with acute aggravation of the skin.  The name of my primary sickness was hypoalbuminemia – an extreme loss of protein though my TSW symptom was VERY severe.  It was here that Dr. Kenji Sato became my specialist in dermatology.

 

From the right, Dr. Kenji Sato, Dr. Mitsuko Satou, Dr. Satoko Minaguchi and Dr. Shigeki Fujisawa.  They are NMT leading doctors in Japan.  Dr. Takahiro Yamada, very left, learned NMT from Dr. Sato directly at Hannan Chuo Hospital.

 

 

MARLENE:  You mention that years later, at a convention, you met a young NMT doctor who remembered thinking that you would never survive this condition.  He also said that he was puzzled by your happy demeanor.  Why do you think you could feel so happy when faced with the horror of TSW?

 

TOKUKO:   I enjoyed the hospital stay so much.  When I entered, I made a big resolution to be a patient who has the sunniest and most upbeat disposition in the hospital…lol.  I wanted to erase the bad image of hospitalization though my symptom was the worst in the hospital

When you go in to the darkness, you should go with the light turning on.  And while your symptom is the worst, if you are seen by a famous, efficient and trustful doctor, how come you need to complain?  You should focus on blessings.

 

Patients often gathered in my hospital room and there was much laughter.  It became known as Tokuko’s Room to Feel Uplifted.  When they needed energy and laughter, they stopped by my room.  When they were depressed, they wanted to talk with me.  In the hospital, I had never felt down even for one second surrounded by nice friends, nurses and doctors.  My heart had been filled with gratitude.  In my blog, I mention “Try to feel positive in every situation.  Mental status is important for the fast recovery.” and I believe it’s true.

You go on to say if you see a tiny good part, bless it.  When you say, “This finger is really bad…” to someone else, you are missing something – Bless the other 9 fingers.

Smiling is not the thing you do only after you became happySmile first, then you can be happy.  It brings you happiness!  This order is important

At a lecture meeting with Dr. Sato

 

To be continued…..

  ”Tokuko Got An Interview – Part 2″  

 👇 CLICK HERE! 👇

Tokuko Got An Interview! – Part 2

 👇 CLICK HERE! 👇

Tokuko Got An Interview! – Part 2

 

                                                        Published:  04 Aug 2019

 

 

 

#Tokuko’s Room To Feel Uplifted  #tokukosroomtofeeluplifted  #TSW  #NMT  #Dr. Sato  #nomoisturizingtreatment  #topicalsteroidwithdrawal