Hearing AIds - Phonak

Hello.

 

First of all, I would like to inform to you guys that I am now a user of hearing aid Phonak BTE (Behind the ear).

 

I use it during my main activities, such as during the class, during meeting, during eating, and most of the time, I use it in order to helps me to hear the voice.

 

I am a single-sided deafness already. My left hearing is somehow deteriorate since the last 7 months of hearing test. However, the previous hearing test is the same as the last 7 month one. اَلحَمْدُ لِله -Praise to Allah.

 

Wow, using hearing aids is helping me a lot. Although it is for temporary basis, but for me, it is important so that I can hear what people are talking, and listening intently. People had been calling me stupid. And I don't know why. One of the reasons is because I cannot hear or don't really understand what people are talking.

 

I hope this Ramadhan is the best from the previous one. This Ramadhan mean so much for me. I hope that I will be a better person and continue until the last day.

 

Cheers!

 

Four legs with fur

Hello friends and readers.

I know that the name of the post seems to be out of context. I just want to share with you guys on how I cope during the time where I couldn't hear anything.

 

Few years back before the first surgery, there was an ear infection on my left ear. At that time, there is no ear infection on my right but I could not hear anything from my right side too. I know something is wrong with me. I could not sleep for many nights even though I am so tired. It is because of the ear infection.

 

I could not hear anything when someone knocked at the door, the sound of the television, the sound of the water, the sound of the rain & etc. At that moment, I just drove to the hospital my self and I don't know if the other driver's is honking because I definitely cannot hear anything. I cannot give my respond because I don't know what is it.

 

At that time, I will know if someone is at the door by looking at the behaviour of my cats. Cheeky and Cheeby likes to 'smell' the door and 'meowing' at me as if it is adjourn. They helps me a lot in locating something. That's makes me feel extra loving!

 

Last two weeks, I have a hearing test. The test somehow deteriorated from the previous hearing test. I will have another hearing test for my left ear (every 3 months) to monitor the hearing level.

 

The surgeon have suggested hearing aids (Cochlear Implant) that needs minor surgery in order to implant it into the brain. The cost of the device is there and do not include the surgery cost. The audiologist suggested to me to hold on with the decision first and monitor the hearing through testing and MRI.

 

 



So, I think it is wise to follow the suggestion of the audiologist.

 

 

Or go with the other direction? It affects my life eventhough I am a single-sided deaf. When I am at a shopping mall alone, or a place where there will be a lot of people and a lot of noises, I have trouble to vocalise the sound and where it is coming from. I become dumb, because could not respond at the same time. It took me times to think of and to process what people say to me. I read the people's lips, and try to sit in front of them (in a restaurant & etc) and focus exactly on what they say. (Not every body knows signing language). This is not happening during the class as the students will keep quiet and listening to what I teach.

 

 

Just smile and wave boys!!!

 

Hugs,

Syida

 

 

Cats for adoption

Hello friends & readers.

Do you still remember that there is a family of cats for adoption at my apartment? The family of cats (the mom & the kittens) is safely foster by a friend's of my neighbourhood. I didn't saw them since last week. I tried calling them but no answer. So, I asked my neighbour the informations about the cats and actually a husband and wife came by my neighbour's house and adopt the whole family. I am happy for that and hope that the cats will live happily with their new home.

 

Thank you to all!

Cats for adoption

Hello friends and readers.

I know that I've not written way too long and to update lately. There's many things inside my mind and I want to write it and share it, but couldn't find the rite time.

Here is a picture of a family of cats. The family of cats has been outside of my house, playing, sleeping, they are cute!!! and not to forget, they poop and pee in front of my house. Everyday, I will clean their poops, cause the kittens choose my house.. (Don't know why). I assume the kittens are 2-3 weeks old.
 

I am staying in an apartment, Level 3, Ukay Perdana and already have cats. For person like me, (with medical condition) it requires an energy to bring the cats down/up for check up and etc. Most of my cats weight 5kg - 9kg. I have that problems, cause I will use my other hands to climb the stairs and so on. I am not able to add another family members (cats) cause of my own condition. So now, I need your help.

 

Anyone who read this blog, and want to adopt a family of cats, please do so. All 5 cats (the mom and the kittens). The kittens still need the mother to feed them. Message me at syahidahishak@rocketmail.com. (The adoption fee is FOC!!!)

Thank you very much!

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?