DET Forum Malaysia facilitated a one-day workshop for members of the Malaysian Advocates for Cerebral Palsy (MyCP) on 27 April. It was held at the Kuala Lumpur Campus of Universiti Kebangsaan Malaysia (UKM) which is situated at Bangunan Yayasan Selangor Kampung Baru.

This workshop was the collaborative effort between DET Forum Malaysia, MyCP, UKM and the Department of Social Welfare Malaysia. Elizabeth Ang co-facilitated with me for the eighteen participants comprising parents, doctors and physiotherapists.

From the action plan that the four groups presented, it was obvious that there is a dire need for accessible and inclusive education for disabled students. These include increasing the number of teaching assistants for disabled students and making the school environment accessible. I hope the participants will carry through their action plans to make schooling easier for disabled students.

Participants identifying problems faced by a wheelchair user at Disability Equality Training workshop.

A participant sharing his thoughts on disability issues at the DET workshop.

Participants at the DET workshop working on their action plan.

Group 2 participants with their action plan at DET workshop.

Group 1 participants with their action plan.

Group 3 participants with their action plan.

Group 4 participants with their action plan.

Group photo after the DET workshop with MyCP members.

I had blood extracted for a series of tests on 4th March 2013 before seeing the nephrologist the following week. They were Renal Function Test, Liver Function Test, Complete Blood Count, Lipid Profile, Nutritional Anaemia and calcium-phosphate test. It was to be my first time consulting a nephrologist at the University Malaya Medical Centre.

I went to see the nephrologist on 11th march 2013. Serum creatine broke the 300 umol/L threshold to hit 301 umol/L. It was unsettling to see the creatinine slowly creeping up the scale. Dr Wong, the nephrologist, explained that at some point in time in the future, I will need dialysis. I am at a pre-dialysis stage and need to be prepared for it. He explained the two options available to me – peritoneal dialysis or hemodialysis.

For hemodialysis, I need to go to a hemodialysis centre where I will be hooked up to a machine to have the waste product in my blood filtered. Each session lasts about four hours and has to be done thrice weekly. For this method, I have to have to undergo a surgery to create a fistula for blood to be extracted dialysis and then returned.

In peritoneal dialysis, a catheter is used to fill the abdominal cavity with dialysis solution. The solution draws waste from the body using the membrane in the abdomen called peritoneum as a filter. The waste is then drained away through the same catheter. This procedure has to be repeated every six-hourly and can be done anywhere.

A Complete Blood Count was also done to check on my anemia. The figures looked horrible with most of the blood elements tested coming in below the average ranges. Serum calcium-phosphate test show that I am hypocalceamia or low blood calcium concentration. There is no treatment recommended at the moment and I had to go back to see him in another three months which coincides with my appointment at the Rehabilitation Medicine Clinic.

However, Dr Wong suggested that I start on Ketosteril again and gave me two boxes to start off. That supply will last me forty days at two tablets twice daily. I had stopped taking it after I developed itching. I have been taking it for one month now and have not experienced any allergic reaction so far.

My LDL level went up because I stopped taking Lipitor for three months to see if it was causing the urea level to go up. Apparently, it did not as urea level was still high. I have since gone back to 10mg daily. I hope the next blood test will show better results.

Renal and Liver Function tests and Lipid profile done on 4th March 2013.

The Jabatan Pembangunan Orang Kurang Upaya (JPOKU) in collaboration with the Japan International Cooperation Agency (JICA) organised the Seminar Sokongan Pekerjaan Kepada Orang Kurang Upaya (Seminar on Supported Employment for Persons with Disabilities) at Avillion Legacy Melaka in Melaka today.

This state-level seminar for Negeri Sembilan, Melaka and Johor was attended by about 180 participants comprising staff from Community Based Rehabilitation centres and employers planning to recruit disabled persons, among others.

This seminar provides exposure and awareness to the public and potential employers on the approach used in supported employment for disabled persons. Current employers were also at hand to share their experience on supported employment and job coaching. It was also an opportunity for cooperation between the various governmental agencies involved in this project and the private sector.

I was invited to facilitate the first session on Disability Equality Training titled “What is Disability?” Ivy Pua supported me as the co-facilitator. This seminar is similar to the one in Kuching where I conducted the same session for participants from all over Sarawak.