It snowed and snowed and snowed. The roads were white. The trees were white. Roofs of cars and houses were white. Frank Sinatra’s White Christmas came to mind. For a while, it was fun seeing snow for the first time. Then the cold bit into every exposed part of the body. I wished I were somewhere else.

Despite the heavy snow, Ai-chan came to inform us of the day’s programme in her wheelchair all the way from her home thirty minutes away. An accessible van would be picking us at 10.00am, then pick Siew Chin and Kim up from the hotel. That particular van could accommodate three wheelchairs instead of the usual two that we used to commute from the Hino Experiment Room to Human Care Association at Hachioji.

When we reached the Odakyu Station at Machida, Ai-Chan and Hippie were already waiting for us. Ai-chan had traversed through the snow from the Machida Human Network office to the station in her wheelchair. Simply amazing!!! We made our way to the train platform to catch a train to Shinjuku.

The trip from Machida to Shinjuku took forty five minutes. First programme at Shinjuku was to take a trip in a non-step bus to the Tokyo Metropolitan Government Building. The height of the bus could be lowered or raised. There is a separate door for wheelchair access. The bus driver pulled out a ramp that was kept under the floor. Getting into it was easy. The inside of the bus had space wide enough to accommodate several wheelchairs. One trip costs ¥180 irrespective of distance.

We got off a short distance away from where we boarded. Again. Ai-chan and Hippie was waiting for us at the bus stop, they having traversed quite a distance in the snow to reach the bus stop. That was just outside the Tokyo Metropolitan Government Building.

Snow flakes that landed on my knapsack, camera and sweater melted and made everything else wet. Still, I persisted in not wearing gloves because I wanted to shoot images of pure whiteness that looked so virginal. There was a time when I could not feel my hands. They were almost frozen numb. When I wanted to press on the shutter button, my finger tip could not feel a thing. My camera froze several times, too.

Ai-chan had planned to take us for lunch up the observation deck of the building. On normal days, the view of Shinjuku and the rest of Tokyo would be clearly visible. However on that morning, snow and fog obscured everything. The restaurant served only Italian food such as pasta and sandwiches only – not delicious by any standard and expensive too.

The heavy snow spoilt Ai-chan’s programme for us. The ride on the Oedo Subway Line and sightseeing of Asakusa had to be cancelled. Moreover, we had to head back to Hino fast as there was a possibility that the train we were to return on could be stopped because of the snow. Before we left, Ai-Chan and Hippie took us to the welfare shop to look at some assistive aids. I was interested in the chopstick that Hippie had used during the welcoming party the evening before.

At the shop that was part of the Odakyu Department Stores, there was a range of assistive devices for the elderly and those with poor motor function. I bought a pair of chopsticks, a bottle opener and a heat/cold pack. I was also interested in a gel cushion but it costs more than ¥41,000. I may also get a pair of gloves for pushing the wheelchair. Many of the items available at the shop are difficult to find in Malaysia.

We said our good byes to Ai-chan and Hippie at the train station. It was freezing cold. The train back to Tachikawa was packed to the brim. From there, we took another train to Takahatafudo and changed to the monorail to Manganji. It had been a long day, very interesting nonetheless. Snow, I do not want to see any for a long time to come. That whole day of being in the cold was sufficient to last a long time.

0635 (GMT +9): We had to wake up early today. Maejima-san was going to accompany us to Machida. We were warned that it could be cold. I had a simple breakfast of prunes, bread and Ensure, as usual.

Manganji Monorail Station

0830: The Sky train station is a stone’s throw away from the apartment. The wind was chilly. My hands were getting numb holding the camera.

0843: We boarded the monorail to Tachikawa-Minami. The snow-capped peak of Mount Fuji was visible in the distant. The blurred panorama outside the train was typical of most Japanse suburbs. The tallest buildings were no more than six storeys. Vegetable patches occasionally dotted the landscape.

0848: From the monorail station at Tachikawa-Minamai, we walked across to the Chuo Line Station. The 8-minute distance was all wheelchair accessible. It was a rather large and busy station.

White Backed Tickets Count for People With Disabilities

0900: Wheelchair users had to report to the Chuo Line station master’s office. One station master accompanied us to the boarding platform. There was a difference of height between the platform and the train. The station master placed a foldable and portable ramp to allow s to get into the train.

0921: We got off at the Hachioji Station to catch another train to Machida. It has been such a long time since I have rode in a “real” train. It must have been at least thirty years ago since Dad and Mum took me on a train from Butterworth to Ipoh.

Machida Station’s first elevator built thirty years ago.

1011: The train finally reached Machida after a short delay. We got into a lift that appeared run down, one by one, to get to the upper floor. Tsutsumi-san was expecting us. She would be taking us on a tour of the Machida train and bus terminal, the topic for this field trip being City Plan and Design of Machida.

1048: After a briefing of the history of the Machida disability movement and how the city became one of the earliest and most accessible city in Japan, she lead us on a guided tour of the accessible facilities.

Street of Machida City, Tokyo.

1137: It was a beautiful day for a walkabout. The sky was as blue as it could be. The sun was shining bright. The roads were clean. Cars were not parked haphazardly. The walkways and roads were properly laid. There were no potholes. Walkways were wheelchair accessible.

1152: Siew Chin and Kim, her personal assistant, checked into a hotel. Harry, Calvin and I were to stay at the Machida Human Network Experience Room. It had to be this way because the Experience Room could only accommodate three persons.

Machida Human Network.

1237: We bought lunch boxes before proceeding to the Machida Human Care. It is a five-storey building, the fourth and fifth occupied by the Machida Human Care. The fourth floor housed the office and Experience Room, the fifth the meeting room.

Ai-chan with Yuri.

1417: After lunch and a quick introduction of the staff of Machida Human Network, the first session began with a presentation on the History and Activities of Machida Human Network by Ms. Yuri Yonezawa, Secretary-General of Machida Human Network.

1621: The Structure of Peer Counseling was presented by Ms. Mariko Ikeda and Mr. Shuntaro Tanikawa. It was an enlightening session as both Ikeda-san and Shun-chan shared how they had used peer counselling effectively to overcome their fears and lack of confidence.

1753: Harry, Calvin and I moved our belongings into the Experience Room. It had two beds and some simple furnishings. We were to spend the night there.

1829: Machida Human Network hosted a welcoming party for us at the meeting room. There were pizza, sandwiches and Japanese finger food. We had a fun time introducing ourselves and chatted freely about a variety of subjects.

Group photo with Machida Human Network staff.

2022: The party ended with group photos taken. I requested for and was provided with a line to log in. It felt good to be using a regular line to surf. The patchy wireless connection at the Hino Experience Room was a pain to use. When the office closed for the night, I turned on the WiFi, got a strong signal and was a happy camper.

Sunday January 22, 2006

Source: The Star, Fit for Life - Doc Blog

Doc BlogIN the United States and Europe, scientists are slowly starting to embrace blogs as an avenue for sharing information and communicating with each other.  

I surfed through Malaysian blogs, hoping to find equally Web-savvy doctors using the blogosphere as a marketplace of ideas.  

My search turned up quite a number of blogs by doctors, although few were actually blogging about medical topics; what I got were mostly personal blogs by people who happened to be doctors. 

One of the most active medical blogs is Malaysian Medical Resources (http://medicine.com.my), featuring several regular bloggers like Palmdoc, TECheah, Dobbs and Vagus (doctors blogging under pen names). 

Malaysian Medical Resources (MMR), as the name suggests, is less a blog than a portal linking its visitors to other medical websites, hospitals, government agencies, societies and organisations, as well as health and medical blogs. MMR also hosts online forums, provides locum listings and posts interesting updates from scientific papers or journals. 

The blog is also worth a visit for its doctors’ running commentary on current medical and health happenings. Every new post gives you a very interesting behind-the-scenes perspective of issues surrounding medicine and healthcare in Malaysia. 

In one recent post, Palmdoc laments the fact that Malaysia has yet to catch up with Singapore, which has just recently recruited top US cancer scientists.  

“We are still mired in politics, stifling policies, red tape and bureaucratic obstacles. We have problems retaining quality researchers let alone attract(ing) those from abroad, whether they are Malaysians or foreigners. Indeed, since we mentioned that Malaysia’s Biovalley is in danger of becoming a Valley of Ghosts, has anything changed for the better?” 

TECheah, another regular MMR blogger, revels in the freedom of expression offered through blogging. 

When he began expanding from personal notes to topics with more controversial undertones, he found that “it offers a feeling of satisfaction when a topic that seems so mundane is brought to life with views from an obscure angle.” 

One subject that is generally deemed “hands off” for doc bloggers is that of patients. “We don’t openly discuss patients ? (or) blog about patients specifically, but we do sometimes mention clinical scenarios in general terms and certainly do not identify patients individually,” says Palmdoc, who blogs from home, usually in the early hours of the morning when he is free. 

“Discussing patient conditions through blogs should not contravene any ethical rules,” adds TECheah. 

For doctors, blogging carries another level of responsibility, as their profession often holds them to a higher standard of ideals. A doctor who uses profanity and false information in a blog is just as distasteful as a doctor who lies, shouts and curses.  

While TECheah feels that doctors should be allowed the same freedom of expression as anyone else, they should also defend the integrity of their profession. 

“The only principle I practise is that one should not write what one would not otherwise say in person. Despite the offer of anonymity, I prefer to back my writings by putting my face and credibility literally on the line,” he says. 

What are the rules surrounding doctors who blog? As far as Palmdoc and TECheah are aware, neither the Malaysian Medical Council nor hospitals have set any rules about blogging, as long as doc bloggers are not seen as advertising their services. 

Nonetheless, both TECheah and Palmdoc requested to stay anonymous in this story. 

Related Stories:
Blogging about health, life and death
A blog to bare your soul
Blogs to visit
 

Sunday January 22, 2006

Blogs to visit

Patients’ blogs 

NF Malaysia – http://nf.yvonnefoong.com 

The Digital Awakening – http://www.petertan.com/blog 

Hee Boon’s Amazing New Adventures – http://fhbadventure.blogspot.com 

Diabetes Mine – http://www.diabetesmine.com 

The Skin Cancer Blog – http://www.skincancerblog.net 

Living with Colon Cancer – http://www.eternal-optimist.ca/living 

The Amazing Shrinking Man! – http://theamazingshrinkingman.blogspot.com 

Doctors’ blogs 

Malaysian Medical Resources – http://medicine.com.my 

Materia Medica Malaysiana – http://malaysianmedicine.blogspot.com 

Dr Cheah’s Pages – http://drcheah.com 

The PalmDoc Chronicles – http://palmdoc.blogspot.com 

Malaysian Medical Students Website – http://ms.malaysianmedicine.com 

The Hard Drive – http://academyalley.blogspot.com 

KidneyNotes.com – http://kidneynotes.blogspot.com 

DB’s Medical Rants – http://www.medrants.com 

Related Stories:
Blogging about health, life and death
A blog to bare your soul
Doc Blog
 

Source: The Star, Fit for Life: A blog to bare your souls

Sunday January 22, 2006

A blog to bare your soul

MOST bloggers will tell you that their blogging journey began as an exercise in personal reflection, but has since evolved into a channel to inspire, motivate and increase awareness. 

“When I began blogging, it was to chronicle my life. I did that because I thought it would be interesting to see my unfolding life and how much I have grown many years later,” says Peter Tan, a thirty-something tetraplegic who is living with renal failure. His blog is, appropriately, named The Digital Awakening (http://www.petertan.com/blog). 

Tan is one of several bloggers in Malaysia who blog primarily about their medical condition and how they cope with it. 

Although the more cynical may view these blogs as “daily rants”, it has become more than that for Yvonne Foong, a 19 year-old girl with neurofibromatosis who maintains a personal blog (www.yvonnefoong.com) and NF Malaysia, which is dedicated to neurofibromatosis (www.nfmalaysia.org). 

Hee Boon’s Amazing New Adventures is a positive spin on living with lung cancer.

“It’s now about sharing my opinions, encouraging and helping others, and spreading awareness (about neurofibromatosis),” says Foong, who co-authors NF Malaysia with a fellow neurofibromatosis sufferer, Keisha Somasundram. 

Foo Hee Boon, who has metastasised, non-small cell lung cancer, sees his blog as a way to present a positive response to his ailment.  

His blog, cheerfully named Hee Boon’s Amazing New Adventures (http://fhbadventure.blogspot.com), is a testament to his courage and resilience in living with a painful disease that seems riddled with complications. 

However, he admits that “it’s not ? fun and laughter all the way, I do get frustrated and I do blog about these ‘down’ moments.” This, he says, gives him encouragement and renewed resolve. 

Most bloggers sacrifice a fair amount of privacy when they write candidly about their lives. What more someone who chooses to share highly personal and, sometimes, painful details of their illness? 

When posed this question, Foong says, “My illness is simply a part of life. I believe that NF has taught me many great life lessons at a very young age, so I wish to impart this knowledge to others too.” 

Sharing information is certainly part of the reason why Tan is more than willing to bare his soul on his blog.  

Tan promotes Independent Living for people with disabilities, and uses his blog to create awareness about disability issues and problems faces by people with physical disabilities. 

“Many people still do not understand the life of a person with physical impairments. I am physically impaired but it is the environment and attitudes that disable and handicap me,” he explains. 

Clean and accessible toilets for the disabled, as well as disabled-friendly transports and buildings, are among the issues that Tan champions tirelessly. 

Blogs also function as virtual support groups, with people in similar situations (or not) rallying together for support.  

“It’s not just the process of passive reading,” Foo notes. “Bloggers usually post their emails so contacts can be made. I benefited a lot when strangers, both cancer and non-cancer patients, contacted me and became friends.” 

Besides providing comradeship, such contacts could pave the way to exchange of useful information about physicians and treatments. 

Some may quake at the thought of sharing their pain with strangers. For others, it seems that sharing is healing. 

Related Stories:
Blogging about health, life and death
Blogs to visit
Doc Blog