Yvonne Foong Introducing A Celebration of Life Foundation on NTV7 The Br...

HERO by Mariah Carey....in sign language

A foundation to establish

Dear friends and readers.

Here is the foundation's name that is under incorporation process. The foundation is for NF patients in Malaysia. However, the logo of the foundation is being edited in order to avoid legal action in future. Here is the edited logo.

The first stage of incorporating the foundation, ie, the name search process has been carried out. In order to proceed with the incorporation, we need to answer to SSM query, which includes RM1 Million pledge, the directors, the estimated income and expenses for 2 years after incorporation, a draft M&A and etc. SSM gave us one month to answer to the query.

Why need RM1 Million in pledge? It is a requirement by the SSM (Suruhanjaya Syarikat Malaysia) and the MOF (Ministry of Finance) so that more helps can be given later in the future once the foundation has been establish. The RM1 Million pledge can come from individuals, businesses or organisations.

Those who would like to contribute to the foundation, either an individuals or organisations are to write a letter saying that they agree to pledge certain amount to the foundation. Your letter will be attached together with the SSM query.

Once we have submitted the pledge letter and answer to the query letter, SSM will consider our application. Once it is approved, we will get in touch with the people who agree to pledge to the foundation and the money will then be banked in to the foundation's bank account.

If you wish to pledge and contribute any amount, do email me at syahidahishak@rocketmail.com. We need to submit it by 4th January 2013.

Thank you to you. Your continuous support and believe will helps many other patients in Malaysia battlling NF and living with NF.

Anakku Brain Tumor

Hello friends and readers.

Here is another book that I read recently. One of the reader post it to me (FOC). The book is written by the wife of popular group in Malaysia (Raihan).

I suggest you to read it in order to understand what is Brain Tumour. The book is available in Bahasa Malaysia only.

Cheers!!!

Telling It Staright

Hello friends and readers.

Just now, I attend a book signing ceremony by the author itself, which was located at MPH Subang Parade. The book is a compilation by the author itself from 2003 - 2012 and some of the articles was published in The Star.

I am reading the book and I suggest you all to read this book. 

 

Cheers!

Brain tumour?..Spinal tumour?..Neurofibromatosis...?

Hello friends and readers.

Here are some information's about neurofibromatosis. Hope it can help you to understand about neurofibromatosis.

Neurofibromatosis is complicated. It comes in many form and effect individuals differently. Yet, it is the most common disorder currently classified as a "rare disease".

Neurofibromatosis are classified as follows:

Neurofibromatosis type 1 (NF-1)

Neurofibromatosis type 1 (NF-1), formerly called von Recklinghausen's Disease or peripheral neurofibromatosis, is thought to occur in 1 of 2,500 births. The gene for NF-1 is on chromosome 17. NF-1 can be characterised by:

 

·         Multiple cafe-au-lait coloured spots on skin
·         Tumours of varying sizes on or under the skin
·         Lisch nodules on the iris of the eyes
·         Freckling in the underarm or groin area
·         Possible learning disabilities
·         Possible bone deformities, including scoliosis
·         Possible optic glioma
·         Possible family history of NF
·         Symptoms sometimes present at birth

 

Neurofibromatosis type 2 (NF-2)

Neurofibromatosis type 2 (NF-2 or bilateral acoustic NF) Is estimated to occur in 1 of 30,000 births. The gene for NF-2 is on chromosome 22. NF-2 can be characterised by:

·         vestibular schwannomas on both hearing nerves, often resulting in hearing loss and/or balance problems

·         cataracts or other visual problems at an early age
·         symptoms can appear as early as 2 years, but usually during or after puberty
·         other tumours of the central nervous system including the brain and spinal cord tumours of the skin.

 

Schwannomatosis

Schwannomatosis is the most recently recognised form of neurofibromatosis. It causes multiple schwannomas (nerve sheath tumours) to form on the central nervous system and chronic pan. No tumours on the vestibular nerves (as in NF-2) are evident.

The onset of symptoms is usually at puberty or older for both males and females. The precise genetic mechanism of schwannomatosis is unknown at this time.

 

Thank you very much to you

Hello friends and readers.

I feel bless this morning. In fact, everyday! I must be thankful to Allah for all the times, the moments that I have now, which I can breath as usual, even until today and this moment. I feel bless that I still can walk, I can run (with cats), I can sleep..etc.

Hearing test

Hello friends and readers.

Last week, I went to hospital for the doctor's appointment and hearing test. Hearing test was carried out for the purpose of to assess my hearing level after the surgery. I am aware of it already as the doctor at HEI informed it to me before the surgery.

The test showed a total loss of hearing at the right side. I am single sided deaf. I am bless that the left side of my hearing is still considered ok (lah).

The doctor suggested hearing aids & etc. It means, there will be a surgery. The hearing aids is not the normal ones as it involve surgery. I didn't make any decision yet so far as the hearing aids will cost about RM35,XXX (plus minus). The issue is not the cost of the hearing aid *** but also about the future.

My future is very uncertain now. The doctor suggested to me to wait first in order to look and to see the hearing level on my left ear, and monitor it through MRI scan. I still have a constant doctor's appointment in order to monitor my health. I have booked an appointment for MRI scan already, and because the MRI scan is expensive, I need to save certain amount of money.

I still can hear bird chirping, the cats is meowing, the TV, the knocking sound of the door (as my cats always like to bamm the door for no purpose reason). Enjoy the moments!

Cheers!!

USA Journal

Hello friends and readers. How are you guys doing today? I hope everything is good.

My trip to USA last year (October 2011) brings an unforgettable moments and memories to me. Individuals, groups and organisations have come forward and give the amount of helps that I myself cannot imagine it.

I still remember, a group of volunteer came over to my house for a visit in multiple times. The amount of efforts of the group, is countless. In fact, I cannot imagine the amount of support that this group has given to me, including in Malaysia and my trip to Los Angeles. They came to visit me before and after my trip! (Even in the hospital, ICU and also the guest center)

Check out the following link and you may know who I am talking about.

http://www.us.tzuchi.org/us/en/images/stories/Publications/e-books/us_journal/2012Fall/Download/2012Fall.pdf

Last week, this organisation was featured in Majalah 3 (TV3), on Saturday night (July, 7), with a topic called "Silent Mentor". When I saw it on TV, and the colour of their clothes, ahhh... I know it already. I stick in front of the TV until the end! They have their own university, which is for the purpose of the medical students to learn, do research and to study about approaches for certain illness and medication.

Love them very much! My visit to their headquarters have open up a story about this group, where do they start, how they started from an individual to large organisation and what makes them different from other organisation.

Cheers!

Signing Language class

Hello. How are you guys doing today? Hope you all are in good conditions.

Hmm.. You probably question what are these photos are all about.

Last Saturday, I attended a signing language class at Damansara Perdana. You may check the link at www.dibcoffeesofhawaii.org

There are many other signing language class in Malaysia. However, the ambiance of this restaurant are very different because it is totally run by those who are totally deaf. You probably want to now where this shop is located. Check out the link for further information. There will be an address & a map to the outlet and many more. You may have your drink or try the food.

Ahh.. I forgot to add. OKU can get 15% discount off on beverages from 9th July 2012 to 30th July 2012! What are you waiting for? Get it now!

Cheers!

Hearing Aids

Guys, last week I got a call from the Welfare Department that my recent application for the allowance of my hearing aid is approved. I've been applying for it by submitting my application, together with the doctor's report and etc since February 2012, and I is already approved! The application is to help me to reduce my burden. Thanks to them!

Now, the next step is to get the hearing aids. This hearing aids is to help me to hear clearly as I lost my hearing on the right ear already since many years ago. Although I don't know my own future and the level of uncertainty, at least I try to survive now and the mortality rate that I have now would also help me to be more courage.


I believe that the challenges will always come to you. The challenge may be small or may be huge. Allah will always test you, in what ever condition you are. With the help of the people, they will come and listen to your problems.


I don't know the level of strength that I have. The challenges and the experiences makes me become more courage. With this strength, I hope to help more people out there to overcome the fear that they have.

Cheers!

NF Fancy Dress Party in conjunction with World NF Awareness

Hello guys, readers and friends.

How are you today? I hope you are in good health.

Last nite, I went to NF Fancy Dress Party, a small gathering comprises of NF patients in Malaysia. Not all can come for the gathering. We gathered around 8pm at Mc Donald restaurant. Most of us were really excited to know about who is joining, and we kept on sharing information about our name, our personal life & etc.

I really hope that this small gathering will actually become a small contribution to all of us, and the community too, starting with who we are, and what is NF. The truth is, this small gathering brings more motivation to us and people who sees us during the gathering. I'm sure you guys agree with me.

Below are some pictures that I have for you. Enjoy it!

Vestibular Exercises

Dear friends and readers.

Ever since this blog was created last year (to raise funds for my surgery), I also hope that this personal blog will help you in your way, to become more healthier person. I do hope that with this smallest changes that I do will help the people out there and the community too.

The following exercises is created to help a person to overcome dizziness, vertigo and imbalance. Maybe you should try it!

First question, how do you know that you have the feeling of vertigo or dizziness. Well my friends, you might feel it like you see that the earth are spinning, you might feel that you want to vomit after spinning your head. One reasons of that feeling is because of the blood circulation is not going so well during the time. Although I am not a medical practitioner, I am dare to say it because I'd feel it already.

The process of getting over dizziness or vertigo is the same as when a sailor gets his or her "sea legs", or a dancer learns to spin around without getting dizzy. The only way that the balance system can overcome dizziness and imbalance is by practising the movements and situations that cause dizziness. The aim of this exercises is to give the balance system all the practice it needs at a time and place where you will not be distracted.

My cats will see me doing this. (Not everyday, hehehe...lazy) At first, my cats feel horror to see me. I know it by looking at their eyes, and they kept meowing. Now, when I do the exercises, all of my cats feels nothing and they will tend to sleep.

Make sure you can do the exercises with your strength and may be you need a help from a friend/family. Stop doing the exercises if you experience:

1) Sharp, severe or prolonges pain in you neck, head or ear.
2) Sensation of fullness, deffness, or noises in the ear.
3) Fainting, loss of concsiousness,  blacking out or double vision.
4) Numbness, weakness, or tingling in your arms or legs.

The exercises are as follows:-

1) Sit upright with your legs out in front of you. Quickly lie straight down on your back. Wait for your symptoms to calm down, and then sit back up again. Repeat 2 - 3 times. When you do this exercise without dizziness, you can move to advance stage. Try your head turned first to the left and then to the right.

2) Sitting in a chair, bend forward and bring your head down halfway towards your knees. Wait for your symptoms to calm down, and then sit back again. Repeat 2 - 3 times. You can move to advance stage when you can do the exercise without dizziness. Try it with your head turned first to the left and then to the right.

3) Sitting in a chair, quickly turn your head and eyas from left to right, 5 times in each direction, as if you were watching a tennis match. Try to focus on an object in each direction. Stop, wait for your symptoms to go away and repeat 3 times. When you can do the exercise without dizziness, try doing this while you are standing up. This is advance level. (As if you are in a stadium-rite!)

4) Repeat exercise 3, but look up and down instead of left and right. Try do this exercise while you are standing up.

5) Do exercise 3 with your eyes closed. (Do not do this exercise standing up)

6) Do exercise 4 with your eyes closed. (Do not do this exercise standing up)

7) Sit in a chair with one arm outstretched in front of you with your finger pointing up. Stare at your finger and turn your head to the left and right 10 times. Start slowly and gradually speed up. Repeat 3 times ( As if you are aiming something)

8) Repeat exercise 7, but hold your finger sideways and move your head up and down.

What is Neurofibromatosis?

Dear friends and readers.

I downloaded the above video from youtube with the permission of the owner, Ms Kristie Hopkins, from USA.

I hope, the above video will help you more and understand what Neurofibromatosis is.

Life is full with challenges guys. Live your life to the fullest and thrive it. Everyday is a new challenge, to me and to all people in this world. No matter what challenges you faces, the challenges actually makes you become stronger and stronger everyday.

Cheers guys!

Neurofibromatosis Awareness Month 2012

Hello friends and readers.

May 2012 has been selected as World NF Awareness month for 2012. Guess what will happen in the month of May 2012? There will be many activities involved.

One of the activities will be Fancy Dress for NF, on Thursday, May 17th, 2012. The aim of this event is to create awareness Neurofibromatosis (NF1, NF2, NF3 & schwannomatosis) and to all work together to stop (& find cure) this common genetic condition being invisible and start it being a household name. You may click on this link and to know more about it: www.facebook.com/events/303841886332757/

With this annual event it will get bigger and better with more people involved each year, and wouldn't it be great to say you were involved from the beginning!

All you need to do is wear Fancy Dress on the 17th of May 2012 and tell people why. The more people who wear fancy dress (especially if you do it in a group somewhere people will see you) the more chance we have of having NF recognised and getting press. After the event please e-mail a photo of you in fancy dress to fancydressforNF@gmail.com, the pictures will then be put to a vote with the top twelve photos being selected for a 2013 calendar.

A Celebration of Life foundation

Dear friends and readers. Do you remember last year, a public charitable foundation that Yvonne is setting up?

She is now working on it and she comes out with the name of the foundation "A Celebration of Life". Now, in order to promote this foundation, she'd like to create a logo to represent the foundation, something that the public can immediately identify and relate to. Are you good at graphics designing? If you are, would you like to help create a logo to celebrate life?

A Celebration of Life foundation will not only assist Neurofibromatosis patients in Malaysia financially. It will also inspire and encourage people to recognize the silver lining and the lessons behind their individual lives.

If you guys out there would like to design the logo with graphics designing, please get in touch with her through her e-mail Yvonnefmn(at)gmail(dot)com. At the same time, if you own a company or business, would you like to consider donating a gift to the volunteers who will help create this logo?

Noormawati is going back home from HUKM

Today, I read the information about Noorma (miera301.blogspot.com), that Noorma will be brought back home from HUKM because the doctor said that "there is nothing much they can do". Although I don't meet Noorma in person at the hospital, I know how she feels. At this moment, her husband and the family really needs support from you guys out there. Please, PRAY for her.

New Link

I have added another link called Neuro Foundation, UK. There are lots of information’s that may help you to understand more about NF and brain tumors. There is information for parent and teachers, as well as what to expect in the future, and also information for parent of what/how to tell to the teachers. Check the link! Cheers!

What to do if do nothing with AN?

Acoustic neuroma is a slow-growing tumor. It is a benign tumor, means that it will not metasize to the other part of the bodies. The AN can be life-threatening if it is not well treated.

The doctors/physicians may suggest to you to "watch and wait" through annual MRI Scan & etc. Here is the part that most people dislike, i.e., "watch & wait", because it involves uncertainty of future and a cost associated to it. It may growth or there is no growth. It may also shrink.

If the tumor is small, then most doctor will suggest to "watch and wait" approach, through annual MRI Scan. However, it depends on the symptoms that you are facing with. Sometimes, even though it is small, but the symptoms are severe, than the surgeons might suggest for surgery/radiation to slow the tumor from growing or get rid of them. All depends on your individual cases. Second opinion is possible.

Those people who are under "watch & wait"; you have to monitor yourself for your health. Watch out for your blood pressure, your lifestyle, your nutrition’s/diet, exercises & etc.

1) Don't worry too much because it might increase blood pressure. If you are stress, you know what best for you.

2) Your lifestyle. Try to live happily. You can have a pet (because it is good for you!), gardening, watch video, sings out loud (hehehehe) and anything that makes you happy.

3) Your diet. You can eat anything you like, but try to balance it. Have a good/balance diet or a good immune system for your body. Eat fruits (such as Apple & etc) and vegetables (such as Broccoli & Etc); eat supplementary for your diet.

4) Exercises/sports - such as Yoga, Tai Chi, martial arts, dancing, bowling, ping pong, cycling and etc. It depends on your balance. Most activities are good for you because it involves balance, focus and etc, but it depends on your priority. If you like games, you may try Nintendo-Wii, a game that involves balancing, focusing and coordinating.

After all, it depends on you!

"Tai Chi"

What to do if you have the symptoms?

There are many things you need to consider if there are symptoms of brain tumor, especially Acoustic Neuroma. Headaches/Hearing loss is one of the symptoms, however it is difficult to know the reasons as hearing loss can be caused by other factor.

1) Do not panic of the symptoms, because if you get panic, you may not be able to think wisely.

2) Go and see a doctor. If you go to see gp, they will give you a medication based on what you tell them. If the problems (symptoms) still persist, then you might need to see another doctor. Perhaps, the doctor at the clinic may refer you to a hospital.

3) When you are in the hospital, tell the doctor about your conditions. When you start feeling the symptoms, i.e, the date, how frequent the symptoms is, family history, what medication do you take, your allergy /reaction to certain drugs or medications.

4) Do some test such as: (Any of it or ALL). Some of the tests are required by the doctor. The tests are:
(a) Hearing test
(b) Audio logical test
(c) Biopsies (as when needed/requested by the doctor)
(d) Laboratories test
(d) Scan (X-Ray, CT scan or MRI Scan)
(e) Etc, which the doctor will request for it

5) From the above tests, the doctor will know the outcome. If the results of the scan show that there is a tumor, then, DON'T PANIC.

6) You might need time for yourself to think and to plan on what to do next, get advices from your friends and most important is to get the advice from those who have the knowledge, and a person who experience it (another patient). If possible get second opinion from another doctor, (the doctor will rely on the scan and the tests).

7) Do a lot of reading about your illness. You can read it by doing a lot of research on the web, or books and etc, because reading from these sources can help you to reduce the feeling of anxiety and it might also helps you to know what will happen to you in the near future.

P/s: I added another link for you guys, ie, (What is Neurofibromatosis)

A story of En. Shuhaimi and Pn Hidayah Cynthia in Berita Harian

Last year, as you all know, I went to House Ear Clinic, Los Angeles, CA with one objective, ie, to remove the entire tumor. The fact that I raise fund for my surgery in order to remove the entire tumor at USA had captured the eyes of En Shuhaimi and Pn Hidayah Cynthia.

I do realise that not so many people willing to share their story. When I try to search about the illness, the cure, the medicine makes me wonder, am I the only one who have the tumor? Why me? Only then, when the story come out, so many people has come forward and say that, "Hei, I also have the same problem..what to do?"

Only those with a brave and strong heart willing to do this. And because of this, there are many ways to share it.

Yvonne, you have a strong heart!

Facial nerve

The image below is a facial nerve, which invole muscle for taste & sensation, facial expression for smiling, eye movement & etc.

There are three types of surgery for Acoustic Neuroma. Translabyrinthine, Middle Fossa, & Retrosigmoid. Every approach has the risks. HEI uses Translabyrinthine surgery approach for my case.

After a surgery of Acoustic Neuroma, there is possibly temporary facial paralysis. Some call it as Bell Palsy. Bell Palsy can happen because of infection & etc, and one of it is brain tumor (Acoustic Neuroma). It took experience and skill neurosurgeon when it involve brain tumor.

The tumor is a slow-growing. It will affect the surrounding nerve as the tumor growth. However, at HEI, size is not a problem for them because they are experience in this field and focus to do research for future generation. HEI pioneer in ENT since 1946, a private non-profit organisation.

Eye closure

Hello guys. How are you guys today? I hope you guys are in good conditions.

After a few months of my surgery in USA, I can slowly close my right eye 100%. I cannot close my right eye even after 10 months of the first surgery. Exercises and physiotherapy really works. The surgeon (at HEI) has minimises this risk.

The surgeon exercises his judgement based on his expertise and experience. My right ear hearing was already loss few years ago even before the surgery and I only notice it when I borrowed an earphone from my friend.

Mark it in your diary

Recently, I have added new links that I want to share with you.

First, as you can see, I have added Acoustic Neuroma Association, where you can also download all the possible information associated with brain tumor and Acoustic Neuroma as you wish. There is a video explaining in details of Acoustic Neuroma. This association is recited in USA. I am already a member. This support group really helpful in order for me to cope with the changes in the future. In fact, most of the informations that we can get through are from the doctors and patients point of view. Although I am in other geographical area, with internet, this support group can across the borders and oceans. Is it fantastic?

Second, as you look at the right corner and scroll down a bit, I also have added another link and willing to share with all of you, about this blog.. A journey to strive and to cure for specific conditions. Mark it in your diary, as it will give you a lot of benefits for now and for your future.

Cheers!

Everyone adapts to survive

Hello guys. How are you today?

First of all, I am blessing to have so many people around me. When I woke up every morning, God is giving me another day of life to me. (Ya Allah, nikmat utama ialah Islam).

As I breathe this morning, I talk to myself, and I look to one of my cats, Danise. She says, MEOWWWWWW to me..(What are you looking at?- I translate for you, maybe this is what she trying to say to me)

The above photo is Danise this morning. I try to cut some of her fur, especially at her butt, but she will wake up, catch my hand and after that, I don't know where the scissor is missing. I am trying to do it while she was asleep (and tido mati)..Guest what, Danise will wake up.

Back to the title "Everyone adapts to survive", it means everything’s to me.

I've been diagnosed with brain tumor last two years, July 2010. It was really shock to me as I try to keep it to myself. But I can't. The news tells me something as it affects my life and my future. In a situation like this, I try to calm down and to think wisely. I should sit down first and to allow the news to "adapt" to my situation.

What should I do then? I started to think about my life, my future and of course about you and all of you. I also think of my cats as they are already part of my life.

I look for the information - brain tumor, acoustic neuroma and etc, on the internet. I looked and looked, the information about what to expect and what will happen to me in the future was unfortunately, not relate to my conditions. As I search the web, I also found about Yvonne Foong.

I also think about my life insurance and my students.

The key when receiving such news is "do not panic". Syida, do not panic. Syida, you must learn to adapt in order to survive.

Now, I still feel some pain from the first surgery. My attempt to remove the tumor which was carried out at HUKM leaves a prolong effects. I still feel some headache and etc.

The wound in my head (near my right ear) from my first attempt is large and can be seen, as compared to the wound which was performed in USA, House Ear Clinic and St. Vincent Medical Center, as the second wound almost disappear and cannot be seen.

You are my hero

Hello guys. How are you today?

Guys, the above video with lyrics, is for all of you out there, whoever you are, where you are, no matter what you do & etc. There is a hero in you...!!

Hugs and cheers!

Many things occurs in 2011

Hello guys. How are you today?

Well guys, as you all know, there were many things happens to me in 2011. Hope this 2012 brings more good news and good things that I wish to look forward.

The above photo was taken at Giant Kelana Jaya, where I met Ms Ng yesterday. I am standing in line at the cashier as this Lion was dancing and come forward to me. Uhhh, it was the first time in my life that suddenly this Lion was just rite behind me. I hear the noises but don't know that this Lion was rite behind me. (Kesian dia...I tak perasan). A lady at the cashier gave me a signal that there was a Lion rite behind me.

The Lion is beautiful! With red color as it brings luck to Chinese Calendar New Year.

Wish all of you out there to have good life ahead!

Cheers!