Joy is Contagious KDN PP 10647/04/2009(021208) JAN - MAR

Transcription

1 Joy is Contagious KDN PP 10647/04/2009(021208) 09 JAN - MAR

2 EDITOR Margaret Chang Chairman s Message CONTRIBUTORS Annie Ng, Jeffrey Lee, Mary Ann Willie, Shen Chan DESIGNED BY Xpress Print (KL) Sdn Bhd PUBLISHED BY National Stroke Association of Malaysia No. 12, Jalan 7/ Petaling Jaya Selangor Darul Ehsan NASAM HEADQUARTERS Address as above Tel: / Fax: [email protected] NASAM AMPANG No 9, Lorong Awan Ampang Selangor Darul Ehsan Tel: Fax: [email protected] NASAM PENANG No 9 Jesselton Crescent Penang Tel: Fax: [email protected] NASAM PERAK No 9, Lorong Pinji, off Jalan Pasir Puteh Ipoh, Perak Tel: Fax: [email protected] NASAM MALACCA 5132-C, Jalan Datuk Palembang, Bukit Baru, Melaka. Tel/Fax: [email protected] NASAM JOHOR No. 59 Jalan Chendera Serene Park, Johor Bahru, Johor Tel: Fax: [email protected] NASAM SABAH Kompleks Badan-Badan Sukarela Wisma Pandu Puteri, KM4 Jalan Tuaran Kota Kinabalu Tel/Fax: [email protected] With NASAM events popping up in my diary at such regular intervals, the first quarter of the year has whizzed by as though we were moving on fast-forward mode. NASAM JB started the ball rolling with its official opening attended by their patron Raja Zarith Idris on 18 February. Following on was their first fundraising dinner held on 20 March. It was a resounding success in spite of the economic downturn. NASAM Malacca, having moved to more spacious premises, organised an Open Day on 21 February to raise public awareness of their rehab services. At NASAM PJ, the signing of the Memorandum of Understanding with UKMMC (Universiti Kebangsaan Malaysia Medical Centre) on 19 March was a milestone event for both organisations. NASAM will be working with UKMMC, the first public hospital to set up a stroke unit, to provide training for their staff on acute stroke rehab. NASAM centres in PJ and Ampang will act as the community rehab link for stroke survivors after they leave UKMMC. This is a project that has long been on our wish list as it will enable more stroke survivors to receive proper care immediately after stroke. We have also committed ourselves to assist in the setting up of a stroke resource centre at the hospital. All the above-mentioned events took months of preparation and I am proud of all the staff and volunteers involved for their commitment in meeting deadlines and targets. To be dynamic in our work we need firm and committed leadership from all our managers and physiotherapists-in-charge to drive our team. To initiate projects requires passion and enthusiasm. To make things work, implementing changes must be concrete and visible. So far we have made a good start - let s keep up the pace for the rest of the year. PRINTED BY Xpress Print (KL) Sdn Bhd No. 17 Jalan Lima, Off Jalan Chan Saw Lin Kuala Lumpur Tel: Fax: Janet Yeo Founder Chairman SPONSORED BY Sanofi-Aventis Bristol-Myers Squibb Partnership ( V) 8th Floor, PNB Damansara No. 19, Lorong Dungun Damansara Heights, Kuala Lumpur Tel: Fax: /9

3 A Royal Visit On 18 February, NASAM Johor Bahru proudly welcomed their patron Raja Zarith Sofia Sultan Idris Shah, the consort of Tengku Mahkota of Johor, to officiate at the opening of the new NASAM Johor Bahru House. The event created quite a buzz at the normally sedate centre. Even the neighbours came out to watch the arrival of Raja Zarith s motorcade. Preparations for the event was an occasion in itself. The day before the opening, staff from the Palace decked out the place with wall-to-wall red carpet, brought furniture, crockery and cutlery from the palace to make sure that our little bungalow was befitting of a visit from a member of the Johor royal family. Amidst all the comings and goings the strokees practised their lion dance and two-and-thehalf-year-old Isabelle Lee, with her cheeky grin, amused everyone by practising her curtsey and salaam over and over again. Raja Zarith was a gracious guest taking time to talk with each and every strokee present at the opening. Hello from London Received via 12 March 2009 Obituary NEWS 1 (Jon Barrick is the Chief Executive of the The Stroke Association, UK) Raja Zarith Idris with the youngest strokee Isabelle Lee on her knee and members of the NASAM JB committee Wilfred Wong (Treasurer NASAM Sabah) Wilfred was one of the first strokees to join NASAM Sabah soon after it was launched in A retired bank officer with Phileo Allied Bank he became a NASAM committee member in A quiet man with many good and inspiring qualities, Wilfred was always true to NASAM s cause and was conscientious in his duties as Treasurer. A post he had held since To many he was a role model. Despite having suffered two previous strokes, Wilfred strove to live a normal and independent life. He showed his determination from the early days of his rehab by refusing to get a lift or take the bus home from his regular physiotherapy sessions at Queen Elizabeth Hospital, preferring to walk the ¾ mile home instead. Raja Zarith Idris chatting to strokees Another therapist for NASAM Penang Thepan Jothy a / l Manogharan, 24, joined NASAM Penang in February. A graduate from MAHSA College, he did his practical training at NASAM PJ. He decided to work for NASAM because he likes the set-up which he finds very different from working in a hospital. To unwind Thepan plays football. An avid Liverpool FC fan, Wilfred kept himself busy with many activities. While keeping an eye on NASAM s accounts, he also diligently went for his twice weekly morning walks at a nearby park, baked his own bread, which he referred to as his OT session, drove his 93-year-old mother to lunch every Thursday and more recently, enthusiastically supported a plan for NASAM Sabah strokees to conquer Mt Kinabalu. A devout Christian, Wilfred was also an active member of the Gideon Ministry and his duties would take him to many places and towns in Sabah. Sadly, Wilfred suffered a massive stroke while attending Sunday mass on 8 March and passed away peacefully at Sabah Medical Centre on 12 March He left behind his beloved wife, Su Si Feng, two daughters and one son. He will be greatly missed by many who knew him.

4 2 FOCUS NASAM Working in Partnership with UKMMC Sometime last year Associate Professor Dr Noor Azah Aziz of UKMMC (Universiti Kebangsaan Malaysia Medical Centre) approached NASAM to work with them on their project for providing stroke rehabilitation in the community. In an interview by Dr Azah shares with us her vision for better stroke rehab service. The post-discharge rehabilitation intervention basically involves intensive neuro-rehabilitation intervention that focuses on task specific activities based on goals set earlier on. In UKMMC, rehabilitation is implemented by the combination of physiotherapist, occupational, and speech and language therapists. After the survivor has undergone one or two courses of therapy, his/her progress will be discussed in the Combined Stroke Rehabilitation Clinic (CSRC) to assess the progress, goals and further intervention. MoU signing ceremony. From left: Professor Dato Dr Lokman Saim, Dean of Medical School and Director of UKMMC, Professor Dato Dr Mohammad Abdul Razak, Deputy Vice Chancelor, UKM, Janet Yeo, Founder of Chairman on NASAM, Margaret Chang, Senior Manager - NASAM Stroke News: How and when did your passion for stroke rehab develop? Professor Dr Azah: I am a Family Medicine Consultant by training and subsequently went for further studies and training in Community and Stroke Rehabilitation. My interest developed after seeing many chronic stroke survivors, in the community, who did not have access to stroke rehab. My training enables me to provide more comprehensive long-term care and management of stroke survivors who have been discharged. The collaboration with NASAM is especially important as it completes the link of stroke management in the community. Stroke News: What areas of improvement/changes do you want to see in stroke rehab in UKMMC? Professor Dr Azah: We would like to see that stroke rehabilitation be incorporated into the overall management of stroke. Rehabilitation is implemented in stages; In the acute phase of stroke recovery - rehabilitation concentrates on early assessment of functional status, mobility and swallowing. Early rehabilitation mainly involves implementing safe transfer, mobilisation, swallowing and speech. At this stage, major impairments are also identified as this will guide us in setting up short and intermediate goals for the survivors and therapists to work on. The late-stage rehabilitation (six months after) will concentrate on leisure intervention and community integration. This will include: assessing hobbies, leisure activities that the stroke survivors will be working on with the therapists; back to work assessment; driving assessment; home assessment; referrals to NASAM and other support groups. This will prepare the patient to return to the community. Stroke News: What are the immediate things you need to do to set up a stroke unit in UKMMC? Professor Dr Azah: The setting up of an integrated stroke care management in UKMMC is currently being developed as a team effort (known as KRISIS) involving multiple disciplines and subspecialities including the Accident & Emergency Department, Neuroradiological Intervention Unit, Neurology Unit, Family Medicine and Rehabilitation Unit of UKMMC. We aim to set up fully integrated services for stroke starting from primary prevention, acute detection and Intervention, acute management, rehabilitation, longer-term care and secondary prevention of stroke. We also are trying to incorporate support from NGOs and others services in the community to complete the project. For example, NASAM will be providing training for our nurses, therapists and carers. NASAM s consultant physiotherapist Francesca Anthony has been co-opted to help us in this area. As for longer-term stroke care, my aim is to establish a protocol for long-term stroke care which we are now starting at the Long-Term Stroke Clinic in Pusat Perubatan Primer UKM, Bandar Tasik Selatan. We will also be working together with NASAM to provide further rehabilitation to stroke survivors, provide information to the public about stroke prevention and rehab services. Professor Dr Azah Aziz (right) at the Stroke Awareness Exhibition Francesca Anthony, Consultant Physiotherapist at NASAM, the coordinator for the NASAM/UKMMC project

5 INFORMATION 3 Tips for Carers Helping Stroke Survivors to Sit Getting a stroke survivor out of bed should be the first aim in rehabilitation if strength is to be maintained. Three or four weeks in bed is a disaster especially for elderly stroke survivors. Many may never recover the strength they had before and those who do have to work long and hard. The first steps are to get the stroke survivor to learn to roll over in bed, sit up and balance on the side of the bed. The rolling over may take several practices before the stroke survivor can proceed to sitting up. Remember that the stroke survivor needs help on the paralysed side, so support should always be given from that side, rather than the unaffected side. One hand holds the unaffected shoulder blade. Bend the knees with the other hand, then gently roll over. Sitting Activities Sitting up in bed facilitates activities such as: by Annie Ng Rolling over in bed Take care to gently turn the stroke survivor to the side and repeat the rolling movement to the opposite side. This is the first step to enable the stroke survivor to sit up in bed. Sitting up in bed If the stroke survivor is unable to sit unsupported make sure that there is enough support using pillows to ensure that the spine is not bent over to the weak side. The arm on the weak side must also be properly supported to prevent spasm of the muscles (refer to side bar). Support weak arm on pillow Why limbs become paralysed in stroke Damage in stroke occurs only in the brain and nothing at all has happened to the muscles themselves or to the nerves from the spinal cord. Paralysis occurs because the damaged nerves from the brain are unable to pass messages to the affected side of the body. As a result they are unable to perform voluntary actions but are also liable to go into uncontrollable contraction. This condition, in which the muscles are unable to act under the control of the will, but readily contract in a purposeless manner, is called spasticity and this is a common feature of hemiplegia (paralysis on one side of the body - a person who suffers a stroke in the left hemisphere of the brain will show right-sided paralysis. Conversely, a person with a stroke in the right hemisphere of the brain will show paralysis on the left side of the body). (Reference: Stroke! A Self-Help Manual for Stroke Sufferers and their Relatives by Dr R.M. Youngson) Grooming/ changing clothes Eating Bathing Watching TV

6 4 COVER STORY Joy is C NASAM Ampang, one of the fastest growing NASAM clubs, has consistently recorded high attendance and is becoming a well-known community hub in Ampang. Stroke News finds out the secret of their feel-good factor that attracts strokees to the Centre. Walk into NASAM Ampang any morning and you ll meet strokees greeting you in English, Bahasa or Chinese with warm, friendly smiles. They start the day sitting in a circle happily chatting, doing weight bearing hand exercise, while waiting for the therapy session to start. If anyone thinks stroke rehab is depressing they should come to have a chat with some of the strokees at NASAM Ampang. They describe themselves as the happiest strokees and NASAM Ampang the friendliest club. Lim Kim Ching (54), popularly known as Mama Lim, has been with NASAM Ampang for five years. Here, people make friends easily. We joke, we laugh, especially during games. When new strokees join us I share my experience with them and give them a lot of encouragement. Thomas Yong (69) says: After my stroke I lost a lot of friends, here I make new friends Malay, Chinese and We have to be creative in preparing our programme to keep strokees interested Strokees enjoying a vigorous game of toss the ball Indian. I find the therapy sessions enjoyable - we do different things everyday. Why is this feel-good factor so evident in NASAM Ampang. I asked Annie Ng, the physio-in-charge. First of all we have to be very creative in preparing our programme to keep the strokees interested. There must always be an element of challenge otherwise they won t feel they have achieved anything at the end of the session. If we were to do the same type of exercise everyday the strokees will lose focus and will exercise mindlessly. The fun factor is also provided by the many different characters here. We have the comic characters, the chatty characters and they draw out the quiet ones. One of the best things about my strokees is that they can laugh at themselves and also with one another. Humour and laughter take the stress out of doing difficult things and eliminate the sense of failure. Because they

7 COVER STORY 5 ontagious Humour and laughter take the stress out of doing difficult things and eliminate the sense of failure enjoy themselves the majority of our strokees come on a daily basis. Their improvement is very noticeable. Annie adds that carer and volunteer support a l s o h e l p e n h a n c e t h e congenial atmosphere. F l o r a w h o provides transport to some of the strokees doubles up as a volunteer during therapy sessions says: Most of the carers assist their family members during therapy instead of just sitting around. They show interest in what is happening. Strokees at the Tenmoku pottery plant We are like one big family Chitra Dass the administrative assistant says. She makes sure she meets and greets the strokees everyday. Recently twenty-two NASAM Ampang members went on a three-day trip to Singapore. The strokees with their new-found confidence are hoping to go to Thailand next year. As a group they are also generous they gave NASAM JB a donation of RM260 for their recent fundraising dinner. Mama Lim having a laugh with fellow strokees Thomas Yong (far left) and Lee Siah Yong Pictures by Annie Ng, Trudy Hooi and Danson Chiew. Text by Margaret Chang Dr Akikazu Amafuji, 91 with help from physiotherapist Josephine Lansangan going through his paces Physio-in charge Annie Ng helping a strokee

8 6 EVENTS Nasam JB s Wish for a Better Tomorrow This is how strokees move and groove NASAM JB s inaugural fundraising dinner themed A Better Tomorrow received rousing reception on 20 March Held at the Grand Straits Garden Restaurant, more than 400 guests were touched by the performances put up by NASAM JB s strokees, carers and volunteers. These included songs and a Hawaiian dance, for which they had put in a lot of practice. The evening started with a welcome speech by Mr Phoon Chee Yap, Chairman of NASAM JB followed by a speech by Janet Yeo, NASAM s Founder Chairman. Youngest strokee, Isabelle Lee, won the hearts of the guests when she went on stage to present a bouquet of flowers to Janet. The impressive line-up of performances included Chinese Yo-yo, face-changing, testimonies by strokees, carers, volunteers and of course, lucky draws. An auction for the donated items exceeded expectations as the guests dug deep into their pockets in generous support. NASAM merchandise and donated items on sale also received good response. Congratulations to the Organising Committee, comprising NASAM JB Committee members, strokees, carers, volunteers and staff for a job well done. Many thanks to the generous donors, supporters and friends who contributed to the evening s success. All the hard work paid off as the dinner netted more than RM67,000. Sold out evening Happy voices from strokees and volunteers by Shen Chan

9 EVENTS 7 Celebrations... NASAM Malacca Open Day On 20 March NASAM Malacca held an Open Day to publicise their services in the new premises. It was a whole day affair to encourage attendance from the public. Chinese New Year party at NASAM PJ Physio-in-charge Irene Teng at NASAM Ipoh giving out Chinese New Year goodie bags For the morning session 32 people came. It started with an opening speech by Ms. Pang Siew Fian, Chairman of NASAM Malacca. She gave an introduction on the centre and the services it provides. Physiotherapist, Imtiyaz gave a talk on stroke and what is required to recover from stroke. This was followed by a talk on diet by Puan Siti Zaleha, Senior Dietician of Hospital Pantai, Melaka. After lunch, eight more participants joined us for the afternoon session. The participants learned about early care of stroke survivors which included demonstrations on handling such as sitting up in bed and transfers. NASAM Founder Chairman, Janet Yeo, spoke about her own experience with stroke and this was followed by a talk on counselling. The event ended with a video on NASAM activities. To enhance the learning environment we put up a display board with pictures of strokees participating in group therapy and also pictures of a case study of one of our strokees. We would like to thank BP Diagnostics for providing free blood tests for the day. by Jeffrey Lee Chit chat time NASAM Ipoh strokees getting ready for Valentine s Day Physiotherapist Imtiyaz giving a talk on stroke rehab

10 8 BOOK REVIEW Experience Gained from a Wounded Brain Brain scientist Jill Bolte Taylor, discovers the beauty and resilience of the human brain after she had a stroke. Every stroke survivor has a I-live-to- tell- the- tale account of their experience. But most of them talk about the aftermath of their stroke having very little idea of what actually happened to their brain. For the first time, in Jill Bolte Taylor s book My Stroke of Insight, readers get a look into a stroke-injured brain from Bolte Taylor s description of what happened to hers during a massive haemorrhagic stroke. She also shares her terror of what it feels like to lose your mind at age 37. I am not stupid, I am wounded, please respect me Bolte Taylor, a Havard-trained brain scientist, began her book two years after her stroke. She worked with a Gestalt therapist who helped her verbalise her right-brain stroke of the morning of December 10, Almost like reading a suspense drama, Bolte Taylor, through the eyes of a scientist, goes through the horror by recounting the step-bystep shutting down of her brain to the point that she could not walk, talk, read, write or recall any of her pre-stroke life within the space of four hours. I relate the cognitive deficits I was experiencing to the underlying biology. As a neuroanatomist, I must say that I learned as much about my brain and how it functions during that stroke, as I had in all my years of academia. The book is divided into four sections: Bolte Taylor s Pre- Stroke Life; The Morning of the Stroke; Milestones for Recovery and My Stroke of Insight. Carers of stroke survivors will find the chapter Healing and Preparing for Surgery moving as well as inspiring. Her mother, she says, was the key to her successful recovery. She was superb at reminding me about what I could not accomplish yesterday and how far I had come today... She kept me on track by paying attention to my details... A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made... Recovery can be derailed by hopelessness. Besides sharing her unique physiological experience and spiritual insights, the book also provides practical information on the physical healing of the brain and how she dealt with the repairing of her mind. In the appendix Forty Things I needed the Most provides an insightful understanding to a stroke survivor s emotional and psychological needs in rehabilitation. The first and most important of the 40 things to note is: I am not stupid, I am wounded, please respect me. This, I believe, may change our perspective on how stroke survivors should be cared for. Review by Margaret Chang Quotes from Jill Bolte Taylor The author with her mother, Gladys Gillman Taylor, Ph.D. I needed the people around me to believe in the plasticity of my brain and its ability to grow, learn and recover. My brain needed to be protected and isolated from obnoxious sensory stimulation, which it perceived as noise. I needed people to celebrate the triumphs I made everyday because my successes, no matter how small, inspired me. My successful recovery was completely dependent on my ability to break every task down into smaller and simpler steps of action. I needed everyone to assume that I knew nothing so that I could relearn everything from the beginning. Walking helped me become strong again, and within the course of that first year I managed to average three miles a day several times a week. I made sure I exercised all of my muscle groups performing shoulder girdle, shoulder, elbow, and wrist activities In addition, I worked with a friend who, through the use of massage and acupuncture, helped me identify my physical boundaries. Physical recovery from the brain surgery was minimal when compared to the task of rebuilding my mind and recovering awareness of my body.

11 DIARY 9 JANUARY MARCH Janet Yeo, Founder Chairman of NASAM receiving the Community Service Award from Dr Rajinder Singh, Governor Rotary District On far left is Sonny Loh, President of Rotary Club of Ampang and far right is Philip Teo, Vocational Service Director. Strokee Soong Fatt Man (left) celebrates his 81st birthday with Wong Yoon Wye (73) at NASAM Ipoh Shen Chan, Manager of NASAM receives the first donation cheque of the year from Resorts World Students from UPM gave a talk on healthy diet to strokees in NASAM PJ FEBRUARY Tunku Rafidah, Chairman of NASAM Ampang Fundraising Organising Committee receives a donation cheque from the Yang di-pertuan Agong Tuanku Mizan Zainal Abidin at the Tunku Abdul Rahman Memorial golf tournament organised by the Methodist Afternoon School Old Boys Association (Masoba) News Flash Forthcoming events: 23 April - NASAM Ampang Party at the Pulse * 6 June - NASAM Ipoh - Fundraising Dinner * 13 June - NASAM Kuantan - Bake n Buy * 17 July - NASAM Sabah Charity Dinner and Show at Sutera Harbour * 2 August - NASAM PJ Food and Fun Fair Dear Friends of NASAM Please give generously to those who need your help. By giving NASAM a donation you will help stroke survivors to help themselves. Your contribution is vital. With your kindness you can make a strokee s wish come true YES! We want to give. Name: Address: Enclosed is a cheque / bank draft / money order payable to NASAM for RM I would like to pledge RM per month for one year. Yes, please include me in the NASAM mailing list. I would like to sponsor a therapist. Please contact me. Please provide me with more information to serve on a voluntary basis. Tel: (O) (H) Note: Your donation will be acknowledged with an official taxexempt receipt. Mail your cheques to: National Stroke Association of Malaysia (NASAM) 12 Jalan 7/2, Petaling Jaya, Selangor. Tel: Fax:

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