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1 Founder Chairman’s Message What can you expect when you have a stroke? Stroke strikes without warning, catching you and your family by surprise. The confusion and chaos that follows is unimaginable. In split seconds your life, as you knew it, is turned upside down. Everything becomes so surreal, until that one day when an unseen hand guides you to fight, to re-learn and to move on with life. For me all this happened 27 years ago when I had a stroke. Years into recovery, I asked God: “What is the purpose of my stroke?” The answer came loud and clear: “Go out and help other stroke survivors.” And I did! The day before I sat to write this message I met a young man in Singapore. He had a stroke six years ago, soon after he completed his final year medical studies at the National University of Singapore. It was a major stroke. With full medical treatment he expected to get well, but sadly he didn’t. He tried every alternative therapy available, but still there was not much improvement. He was young, so armed with faith and courage he moved on with his life. Today, he is married, has a son, and operates a tuition centre employing eight tutors. He gives inspirational talks to students and organisations, emphasising that one has to move ahead in life despite the odds. I learned from him, and from my own experience, that we do the best we can to recover from stroke, but we must accept that life will never be the same again and learn to move on, regardless of the state of our recovery. So, what can one expect after a stroke? I would say...a second chance to live life to the fullest no matter what the odds! Janet Yeo Founder Chairman Overview WHAT TO EXPECT WHEN YOU HAVE A STROKE Imagine waking up one morning feeling as normal as you always do. You go about your daily routine. Minutes later you experience a strange feeling. Your hand falls limp and you may even have difficulty standing. You feel uneasy as if in a daze. But within seconds, just as quickly, a feeling of normalcy returns. You proceed with your morning rituals, choosing not to pay any attention to what you have just experienced. At this stage you should be concerned…that feeling of uneasiness may be the early warnings of a stroke or a brain attack that could return later and cripple you completely. The above is just one scenario. A stroke can come in many different forms. It is devastating and affects the whole family. A stroke is a serious medical emergency that needs urgent treatment. The sooner one is diagnosed and treated, the less debilitating it is and the better the recovery. Even if symptoms are temporary, immediate medical attention is very important. Some treatments that can reverse the effects of stroke can only be used in the first few hours, so go to the emergency department of a hospital fast. Strokes happen when the blood supply to part of our brain is suddenly cut off or reduced. Without blood, which carries essential nutrients and oxygen, our brain cells can die or get damaged. Remembering Stroke FAST Two million brain cells die every minute during a stroke, increasing risk of permanent brain damage, disability or death. Recognising symptoms and acting FAST to get medical attention can save a life and limit disabilities. Other symptoms: • Sudden blurred vision of one or both eyes • Confusion, unsteadiness or clumsiness • Epileptic fit • Tingling of jaw • A sudden, severe headache 2 Even if symptoms are temporary, immediate medical attention is very important. Our body usually warns us of an impending stroke. Recognise the signs and take prompt medical action! The brain - its parts (boxed) and functions. Voluntary Movement Sensation PARIETAL LOBE FRONTAL LOBE OCCIPITAL LOBE Sight TEMPORAL LOBE Emotions CEREBELLUM Hearing F A S T Balance & Coordination Facial Drooping: Ask the person to smile. Does one side of the face droop? Arms Weakness: Ask the person to raise both arms. Is one arm weak and drifting downwards? Speech Difficulty: Ask the person to repeat a simple phrase. Is the speech slurred or strange? Time To Call – If you observe any of these signs, call 999 immediately! 3 Overview Our brains control everything we do, think and feel – things that we often take for granted like being able to move, speak, understand and remember. If the part of our brain that controls any of these activities is damaged, our ability to do these things is also affected. RIGHT BRAIN DAMAGE LEFT BRAIN DAMAGE Paralyses right side Paralyses left side Language/ speech deficits Perceptual/ spatial deficits Behavioral style: slow, cautious Memory deficits (Language) Behavioral style: quick, impulsive Memory deficits (Performance) The diagram shows how most stroke patients are affected. A stroke on the right of the brain affects the left side and vice versa. Strokes can be classified into two major categories: Ischaemic and Haemorrhagic. About four out of every five strokes are caused by a blockage (Ischaemic stroke) in or around the brain. For patients with Ischaemic stroke there is a “clot-busting” treatment to manage blockages of blood vessels. However, it can only be used in the first four-and-a-half hours after the onset of stroke symptoms. Unfortunately, most patients go to the hospital too late to be considered for this treatment. Anti-platelet medications (that make blood less sticky) are given to these patients to prevent recurrence of the stroke. (See page 8). Hospitalisation When you have a stroke it’s best to go to a hospital with a specialist stroke ward for better care and assessment. You can, at first, go to Accident and Emergency (A&E) where you will be put through tests to confirm you have had a stroke. Most patients with stroke are admitted. The duration of hospitalisation depends on various factors and the severity of the stroke. 4 JANET YEO MY JOURNEY THROUGH STROKE “In mid-1988, six months before my stroke, I experienced many short giddy spells. Just spiltsecond disorientations. At that time I put it down to being tired and from lack of sleep. Now I know they were TIA* (Transient Ischaemic Attack), or mini strokes caused by temporary interruption of blood supply to the brain, usually preceding a major stroke. Sure enough, in April 1989, I suffered a stroke. On the morning of April 5, I tried to make a pot of tea at home, but my right hand wasn’t cooperating and I couldn’t complete the task. Once again, I ignored the signs and proceeded to dress up and drove to the hairdressers before going to my office. While I was at work my head kept pounding. When the phone rang, I was not able to pick it up with my right hand. It was then that I decided I was really sick and needed to go to a hospital. By the time I reached the hospital, I was totally paralyzed on my right side, and my speech was slurred. At the hospital I was told I had a stroke. I had no clue what it was but told the doctor to treat me, as I had a full week ahead and did not wish to stay in the hospital too long. I ended up staying for a full month. The stroke had taken place during my sleep. It had evolved into a full blown stroke while I was at the office. Had I gone to the hospital in the morning, when my hand wasn't taking instructions while I was trying to make tea, I would probably have suffered less damage. I lost four precious hours! I was 44-years old! I was confused, frustrated, scared, and kept asking God “Why Me?” For the first time in my adult life, I had to depend on someone to bathe, feed, dress and turn me over in bed. It was very The following are excerpts from a conversation with Janet Yeo, Founder Chairman of NASAM. humbling and humiliating as well. The longer I was in self-denial, the more frustrated and angry I became. In fact, I was so terrified I asked everyone to pray for me. One night, I turned to God and told him that I accepted his decision to allow the stroke to happen in my life. I was ready to trust God to walk me through the valley of death and had no fear. Once I finished my prayer, I was at total peace. I no longer struggled or was fearful. I felt a deep sense of hope and excitement. During the hospitalisation period, you will undergo several tests, procedures and consultations, including brain scans (a CT scan or an MRI) and blood tests (See page 9 for Tests And Procedures In Hospital). These will assist your doctor to diagnose the type and cause of stroke, as well as your stroke risk factors, which in turn will influence your treatment. A brain scan should be done as soon as possible – always within 12 hours of your stroke (or sooner as you will benefit from urgent treatment). A stroke may have physical, cognitive and/or emotional effects on you. Physical Effects Poor coordination Abnormal posture Loss of movement or abnormal movement on one side of the body Loss of speech or difficulty in talking Incontinence Partial loss of vision Inability to swallow The next day, I asked the nurses to wheel me to the bathroom as I wanted to shower and not be sponged. I made it a point to be dressed in a clean hospital gown each morning, have my breakfast sitting up in a chair, ready for my husband’s visit before he went off to work. I felt great and chirpy, and the nurses were surprised with this change. In the therapy room, I became very competitive, as I tried my best to excel in every exercise given to me no matter how hard and challenging. I was so positive and motivated that the nurses would wheel me around to cheer up stroke patients in other wards. With quality rehab a stroke survivor’s recovery is faster. My husband challenged me at every angle, never allowing me to feel sick or incapable. I had to attend dinner functions, children’s outings, go for therapy on my own with the driver. In Singapore, where I went for further treatment, he would take me out to dinner once or twice a week, against the hospital’s advice. He insisted that I dress up for dinner and we would walk to the restaurant. 5 Overview Cognitive & Behavioural Changes More cautious, anxious and disorientated Depression, unable to control emotions Poor concentration Inability to understand speech and/or to communicate verbally Ignore/neglect affected side of the body Perceptual deficits Inability to judge distance, size, position Loss of feeling on one side of body Unable to picture your body in your mind Immediately after a stroke there can be serious complications, such as an increase in the size of brain damage and swelling around the area of brain damage. The risks of these complications vary from patient to patient. Your doctor will discuss these risks with you and your family. While in hospital, you will be managed by a team of healthcare professionals, including physio therapists, occupational and speech therapists, counsellors and dieticians. Treatment includes oral medications and close monitoring for any deterioration and complications. In some cases, it may involve medications via infusions and surgery. If you have swallowing difficulties, are being fed using a tube, are underweight, have diabetes or no appetite, a dietician can recommend a healthy and nutritious diet. Rehabilitation Following a stroke it’s critical to begin rehabilitation early to re-learn skills you have lost, acquire new skills and find ways to manage any long term disability you may have. Once you are medically stable, your doctor will advise and recommend a programme tailored to your symptoms and specific needs. 6 At the restaurant I would be so embarrassed because I could not handle a fork and spoon or a knife. I struggled to hold the cutlery in my left hand and eat or go hungry. And to add to my embarrassment, my dress would slip off my shoulder because you become lopsided after a stroke. It may sound cruel, but it was very good for me. I learned faster and with time I channelled my anger and frustration towards recovering. I started using my brain and other faculties again, which was so important for my recovery. Seven months later, I was able to travel alone to the Los Gatos rehab hospital in California, in the US. There I stayed in an apartment with another stroke survivor for a month, and each day we walked to the bus stop to catch a bus to the rehab hospital. It was here that I learned to be totally independent, as we had to cook, do our laundry, go to the hospital, do our exercises and stay focused and not break down. Janet after her stroke in 1989… After a stroke early rehab is crucial. Stroke brought me to my knees. It humbled me and made me realise that money, fame and glory is of no use when you don’t have good health or family and friends. Today I am going for treatments, therapy, exercising and living a full life. I believe in keeping busy, doing positive things, persevering, staying focused and being thankful and happy. I have real friends and an extremely supportive family who stayed with me throughout my journey of recovery. And, I found God! Before returning home, the Los Gatos hospital decided I need an AFO (ankle-foot orthosis) to insert into my shoe to help me walk better. After the stroke I had a collapsed arch and a dropped right foot, which meant I walked with my toes sweeping the floor, and in due course, the collapsed arch would affect my spine. I can remember clearly the day when I had to wear the AFO. My heart sank and I was in tears. At that time I felt like a cripple. I had to buy men's shoes so the AFO could be inserted, and overnight my wardrobe changed. No more dresses, it was down to pants. To me this was a precious sacrifice – from pretty dresses and elegant designer shoes to pants and thick, bulky walking shoes. A group therapy session at NASAM. Today, 27 years later, I am still working hard at rehabilitating my collapsed arch and dropped foot and am determined to keep going. I am nearly there!” The sooner therapy starts, the faster the brain relearns normal movements. The longer rehab therapy is delayed the harder it will be for a survivor to recover and be independent. ... and today a picture of wellness. Transient Ischaemic Attack TIA or Transient Ischaemic Attack occurs when the blood flow to part of the brain stops for a short period. It can mimic stroke-like symptoms which appear and last less than 24 hours before disappearing. The temporary interruption of blood supply causes brain cells to die. About 40% of people with TIA will have a stroke within five years. Hence, it is important to seek medical attention as soon as you notice the onset of any symptoms. * It is common to have problems with vision after a stroke. An ophthalmologist can assess your vision and recommend special glasses or other visual aids. After a stroke you may have to deal with emotional issues such as anxiety, depression and mood swings. Many survivors also find that they cry a lot. This crying may not mean that the person is depressed. It could mean experiencing other emotions such as sadness or happiness and is known as reflex crying. Stroke can also impact sex and relationships. Sexual issues include loss of libido, erectile dysfunction and decline in vaginal lubrication. Start your sexual rehabilitation when you are ready. Ask questions and seek professional advice. 7 Overview Your rehabilitation may be continued at the hospital after discharge or you can seek rehab at NASAM or any professional centre near your home. NASAM offers stroke specific rehab that includes speech, physical, occupational and recreational therapies, group activities and counselling. (Read more about NASAM’s goal to make stroke survivors mobile, independent and active on page 14). Long-term complications associated with a stroke include epilepsy, clots in the veins of the legs due to prolonged immobilisation, infection, depression, joint pains and contractures, increased stiffness of the affected limbs and constipation. Ask your healthcare team how to prevent these complications as well as how to manage them. Ischaemic stroke accounts for 87% of all stroke cases. It occurs when a blood vessel carrying blood to the brain is blocked by a clot. This prevents blood from reaching the brain and deprives the brain of oxygen and nutrients. Haemorrhagic stroke or a bleed in the brain occurs when a weakened blood vessel ruptures. This causes blood to leak into the brain, again stopping the delivery of oxygen and nutrients. There are usually two types of weakened blood vessels that cause this type of stroke – aneurysms (a weak or thin spot on a blood vessel wall, usually present at birth) and arteriovenous malformation or AVM (arteries and veins that are bunched together anywhere including the brain and also usually present at birth). But the most common cause of haemorrhagic stroke is uncontrolled hypertension (high blood pressure). Patients will be assessed for the need for emergency surgery to drain the accumulated blood. Stroke Prevention To prevent stroke, live a healthy, balanced and active life. Have regular medical checks, you are never too young to have a stroke. Seek professional care and make sure you monitor your condition regularly if you have any of these risk factors – High blood pressure (people with high BP are at greater risk) High cholesterol 8 Diabetes Atrial Fibrillation (irregular heart beat) Heart disease/disorders Physical inactivity Obesity High alcohol consumption Smoking Stress Depression Take the necessary precaution or medication and reduce the risk of getting a stroke. MRI (Magnetic Resonance Imaging) scans are taken in a large tunnel-shaped scanner that produces a more detailed picture of the blood vessels in the brain. Blood-thinning medication – Unless your brain scan shows that you have a bleed, you should be given an anti-platelet drug as soon as possible. Part of the rehab programme will involve learning how to adapt and cope with these effects. This may involve learning new ways to help you perform daily tasks, use of tools and aids such as walking frames, ankle-foot orthotic braces and installation of home modifications. Participation in rehabilitation and keeping active is known to improve outcomes following a stroke. Two Major Categories Of Stroke A CT (Computer Tomography) scan is a form of X-ray of the brain. The results show which part of the brain has been damaged. Thrombolysis – If you have had a stroke caused by a blood clot, you may be given a ‘clot-busting’ treatment called thrombolysis to improve chances of recovery. Thrombolysis can only be given within four- and- ahalf hours of stroke symptoms starting, though the sooner it is given the better. Stroke recovery is a slow process. After an initial stroke has occurred, generally one of two scenarios will exist. Either the patient will have residual impairments such as paralysis, deafness or blindness on one side or will make a recovery without any long-lasting effects. Up to 60% of stroke survivors have some disability. NASAM has a wide range of stroke specific rehab therapies. Tests And Procedures In Hospital High blood pressure is the most common cause of stroke. You will have your blood pressure checked and given medication to reduce (if needed). The effect of stroke varies and depends on the extent of brain damage. Following a stroke, survivors are at risk of another stroke and other vascular diseases such as heart attacks. Seek advice from experts on how to reduce this risk. It may include taking medication, keeping regular medical appointments and adopting new lifestyle habits, such as a healthy diet and exercising regularly. Recovery Good nursing care in the early days of stroke also plays a critical part in recovery. It helps avoid complications, for example if you have a paralysis in your arm or leg, a nurse or therapist can make sure you are positioned and supported correctly to prevent further damage or pain. If you cannot move about in bed yourself, you may need a special mattress or be moved regularly to avoid pressure sores and blood clots. It’s also not unusual to have difficulty controlling your bladder and bowel movements soon after stroke. As you progress in your recovery these abilities can return. Some people who have a minor stroke can recover well quite quickly. If a stroke is very severe, you may be left with long-term disabilities. Around 20% of people die from a stroke if parts of the brain An ECG (ElectroCardioGram) records the rhythm and electrical activity of you heart. This test can help to diagnose a type of irregular heartbeat called Atrial Fibrillation (AF), which increases your risk of having a stroke. A carotid Doppler examines the rate the blood flows through the carotid arteries in the front of your neck. A doctor uses this if it’s thought your stroke has been caused by the narrowing of this artery. Swallowing – If you cannot swallow properly after your stroke there is a risk that food and drink may get into your lungs (aspiration), which can lead to serious chest infections and pneumonia. If you have difficulty swallowing you may have to be given pureed food or thickened drinks. You can also have fluids through a drip to prevent dehydration and receive your medication in a safe way. Tube feeding – Your overall recovery will be better if you can start to eat and drink again. If this is not possible, you can be given food and drink through a tube. There are two types of tubes: a nasogastric (NG) tube, which goes up your nose and down your throat into your stomach; and a gastrostomy tube (PEG), which goes straight into your stomach. If you have a tube fitted, it can be removed in the future once you can swallow safely again. To help your mouth feel fresh, you (or with the help of your carer) can regularly brush your teeth and keep your mouth moist with a wet swab. 9 Overview The information on What To Expect When You Have A Stroke has been extracted from various sources. Read more at: www.nasam.org/www.stroke.org. uk/www.healthxchange.com.sg/www.webmd.com/ www.mayoclinic.org/www.strokeassociation.org. The Monkey Swings Into NASAM NASAM clubs burst into the Chinese New Year mood in February. Stroke survivors, carers, friends and staff celebrated with the traditional lion dance and ‘lo hei’ tossing. Our heartfelt Thank You to all sponsors who made the celebration possible at the various Clubs. We wish you a healthy, prosperous and peaceful year. Events Gong Xi Fa Cai from NASAM to all our Club Members, Friends and Families! Regular exercise helps survivors recover faster. that control vital functions, such as breathing, stop working. In the first few days it is normal to feel very tired, anxious, emotional or depressed, and to lose your appetite. With help and plenty of encouragement from your caregiver, family and others, improvements will take place and you will start to feel more confident. You can also refer to NASAM’s handbook ‘understanding STROKE’ available in English, Bahasa Malaysia and Mandarin. This list of hospitals providing stroke care is not comprehensive. welcomes hospitals to contact us so we can further expand our list. Where To Go Private Hospitals The following list of private hospitals providing stroke care has been compiled with the help of the Neurology Department of Hospital Kuala Lumpur. Public Hospitals Public hospitals may not have dedicated stroke wards although some may allocate a few beds in the medical ward for stroke management. Survivors will be looked after by neurologists and other specialists. Hospital Alor Setar (Hospital Sultanah Bahiyah) Hospital Ipoh (Hospital Raja Permaisuri Bainun) Gleneagles Kuala Lumpur Pantai Hospital Kuala Lumpur Prince Court Medical Centre Tel.: +603 4141 3000 Tel: +603 2296 0888 Emergency: +603 2296 0999 Tel: +603 2160 0000 Emergency: +603 2160 0999 KPJ Tawakkal Specialist Hospital Sunway Medical Centre KPJ Sentosa KL Specialist Hospital Hospital Pulau Pinang Hospital Kuala Lumpur Tel: +603 4043 7166 Tel: +604 222 5333 Tel: +603 2615 5555 Hospital Kuala Terengganu (Hospital Sultanah Nur Zahirah) Hospital Kota Bahru (Hospital Raja Perempuan Zainab II) Tel: +609 623 3333 Tel: +609 748 6951 Tel: +603 4026 7777 Emergency: Ext - 1046 KPJ Seremban Specialist Hospital Tel: +606 767 7800 Emergency: +606 763 6900 Emergency: +603 7491 1162 Tel: +603 7491 9191 / +603 5566 9191 KPJ Kajang Specialist Hospital Tel: +603 8769 2999 Emergency: +603 8769 2911 * Ara Damansara Medical Centre * ParkCity Medical Centre 10 When You Have A Stroke Stroke Hotline: +6019 217 9442 KPJ Selangor Specialist Hospital Tel: +603 5543 1111 * Subang Jaya Medical Centre Emergency: +603 7839 9210 Tel: +604 740 6233 Hospital Sungai Buloh Tel: +603 6145 4333 Tel: +605 208 5000 Hospital Johor Bahru (Hospital Sultanah Aninah) Tel: +607 225 7000 Hospital Kuching (Hospital Umum Sarawak) Tel: +6082 276 666 In hospitals without neurologists, a stroke patient is managed by general physicians and other specialists. 11 NASAM PJ NASAM Sabah The upbeat mood for the Chinese New Year party was set by dynamic lion dancers from the Sheng Wai troop. The young, agile dancers kept their audience mesmerised and later sportingly posed for the cameras. Before leaving for their next performance the troop shared their goodwill by donating to NASAM their ang pow collection – a gesture NASAM greatly appreciates. Entertainment at the PJ Club included an erhu performance by volunteer Tony Lim. Some survivors joined him and sang popular Mandarin songs. Members also showed their goodwill during an auction, when an artwork by stroke survivor George See closed on a bid of RM150. The proud owner Betty Ng decided to donate the piece to NASAM. Another highlight was selecting the best dressed stroke survivor. The winner was Soong Chun Wei. NASAM Penang The celebration ended after the traditional tossing of ‘lo hei’ and a sumptuous lunch. NASAM Kuantan 12 13 Health Qamer Iqbal Khan, NASAM’s Rehab Training and Development Head, (BPTh,MPTh). Stroke survivors who are able to walk independently may be exempted from having a caregiver in attendance if their balance abilities, for example, while sitting or when changing from sitting to walking, are up to mark. WHAT HAPPENS AFTER STROKE Once the person’s overall condition has stabilised, often within 24 to 48 hours after the stroke, rehabilitative therapy can begin. Stroke rehab is important for recovery. It helps you to cope and adapt to your situation so you can become as independent as possible after your stroke. In hospital, once you start to recover, you may be moved from the intensive care unit to a normal or rehabilitation ward. The people in your stroke team will work with you and your family to assess the effects of your stroke and what that means for your rehabilitation. A group participating in trunk control therapy. Group and Individual Sessions Whilst you’re in hospital you will have daily sessions with your different therapists to help you re-learn the skills you have lost and prepare you on how to manage any longer term issues. Because every stroke is different, there is no set recovery pattern. NASAM provides therapy in a group as well as individual sessions. Group therapy is found to be motivational. It provides stroke survivors the opportunity to exercise with others experiencing similar challenges and encourages them to strive harder for better results. The peer support tends to create a healthy, happier environment. The one-on-one sessions, on the other hand, are more personalised as they focus more on the specific needs of the survivor. Some people who suffer a stroke do recover quite quickly, but unfortunately not everyone gets better. If a stroke is very severe, you may be left with long-term disabilities. Your own motivation plays an important role in your recovery. The more you practise your therapy exercises the more likely you are to re-learn skills and adapt to new ways of doing things. But it also takes time and patience, as well as practise and determination. Generally all new stroke survivors go through one-on-one sessions to educate them about the stroke and its risk factors as well as the lifestyle changes they have to make, to prevent recurrence. Cases that require one-on-one attention include survivors who are young and need intensive rehab and those with complex medical histories. NASAM and Rehabilitation Therapy sessions at NASAM are designed specifically for stroke survivors. There is no age limit and the suitability for admission is at the discretion of the RTIC/ RT (Rehab Therapist In Charge/Rehab Therapist) who makes the initial assessment. One of the stipulations for registration is that all dependent stroke survivors, e.g. those who need assistance walking or going to the toilet, must be accompanied by a caregiver at all times. This helps prevent falls and injuries. 14 Stroke survivors at NASAM are grouped into three categories – advance, intermediate and early level of impairment. This allows the RT to develop therapy programmes based on their functional levels. All stroke survivors are monitored regularly to evaluate their progress. Decisions regarding progression within the group or from one-on-one sessions to group or from group to one-on-one depend upon the evaluation. Support Groups A stroke can trigger depression. Recovery takes time but treatments are effective. Some of the treatment strategies at NASAM include: Cognitive Behavioural Therapy (CBT) - A type of psychotherapy, or talk therapy, that helps people change negative thinking and behaviours that may contribute to depression. Sessions organised by volunteers from Befrienders are an important element for cognitive behavioural therapy. Peer support group - A peer supporter is skilled in listening non-judgementally, offering emotional support, and discussing community resources and healthy coping mechanisms. By serving as a role model, sharing experiences, and offering support to another individual, the peer supporter also enhances his or her own self-confidence. important step in the recovery process. With the guidance of the counsellor, the survivor will have the opportunity to talk about how the stroke has affected his/her life and discover ways of moving forward. Having the space to talk things through can be very helpful. Club Outings - Each club organises trips for stroke survivors and their carers, either locally or to other states, a few times a year. These outings provide an opportunity for the survivors to explore life beyond their normal routine. It also provides a perfect opportunity for the survivors to bond with each other and share their personal experiences after stroke. A club outing to Sekinchan. Entertainment Therapy - Games, laughter sessions and parties are arranged on a regular basis to motivate stroke survivors. Other activities include cooking, arts and crafts and gardening. Our peer support group is managed by a stroke survivor and is under the supervision/ guidance of the therapist in charge of the club. Counselling - Acknowledging what has happened and accepting how life has changed is an Therapy through cooking. The NASAM Stroke Rehabilitation Team Rehabilitation is a team effort. Hence stroke survivors are likely to work with a multi-disciplinary team during rehabilitation. NASAM’s stroke rehabilitation team consists of qualified physio, speech and occupational therapists, counsellors and volunteers to support a stroke survivor’s recovery. Physiotherapists – If you have balance problems, paralysis or muscle weakness a physio or rehabilitation therapist can develop exercises to help you move more easily and prevent a joint from becoming stiff and painful. Speech therapists – assess and teach stroke survivors to deal with swallowing problems and re-learn speech, reading, writing and language skills. Occupational therapists – focus on improving a stroke survivor’s ability to perform daily tasks such as eating, bathing and dressing while at the same time showing how to avoid injuries. Counsellors – help stroke survivors and their families to accept and deal with emotional and behavioural issues. The counsellors listen to stroke survivors in a calm and non-judgemental manner to allow a sharing of feelings and issues. Counselling is also provided to caregivers who have trouble coping or adapting to the increased responsibilities and changed lifestyle. Qamer paying individual attention to young survivor Jordan Ong. Volunteers – those who have time to spare and are in good health, friendly, compassionate and love interacting with people or have special skills. They are trained to lend support in specific areas. 15 The Role Of Family And Carers “Although the recovery of a stroke survivor depends on self-motivation and the strength of the individual, family support is very crucial. Recovery is not an overnight thing but a journey which takes a lot of time, care, perseverance and love.” Janet Yeo, Founder of NASAM. Stroke can be sudden and unexpected, so caring for a stroke survivor can be challenging. Caregivers – a family member, friend, domestic helper and/or a healthcare professional – play an important role throughout the post-stroke recovery process. Caring for stroke survivors can cause high levels of emotional, mental and physical stress. There will also be disruption of employment and family life that makes caregiving very challenging. Tips to remember when care giving: Learn from healthcare experts how to help with daily exercises, diet and other forms of care. Set sensible recovery goals. Give the survivor lots of time to complete a task. Encourage participation in daily activities such as household chores (independently if possible) Motivate and praise the survivor. Be cheerful and hopeful. Remind the survivor to look, touch and move affected limbs. Be actively involved in therapy sessions (e.g. at NASAM) and give feedback. Include the survivor in discussions, outings and leisure activities. Get other family members and friends to support the recovery programme. While caregivers can promote positive post-stroke recovery, they need to care for themselves as well. NASAM also has a support programme for caregivers who have trouble coping or adapting to the increased responsibilities and changed lifestyle. If you have any questions related to caring for a stroke survivor contact Qamer at qamer_pt@ nasam.org / 014-3239843 or 03-79561876 ext. 103. 16 Some Tips To Remember When Your Loved One Suffers A Stroke 1) Medication – Be aware of the medications that have been prescribed to your loved one and their side-effects. 2) Reduce risks – Survivors who have had one stroke are at high risk of having another one if the treatment recommendations are not followed. Make sure your loved one is on a healthy diet, exercises (walking is a great exercise), takes medications as prescribed and has regular visits with their physician to help prevent a second stroke. 3) Recovery – This depends on many different factors: where in the brain the stroke occurred, how much of the brain was affected, the patient’s motivation, caregiver support, the quantity and quality of rehabilitation, and how healthy the survivor was before the stroke. The most rapid recovery usually occurs during the first three to four months after a stroke, but some stroke survivors continue to recover well into the first and second year poststroke. Every stroke and stroke survivor is unique, avoid comparisons. 4) Falls – After a stroke it’s common to fall. Use an ice-pack immediately to reduce pain and swelling. If there is severe pain, bruising or bleeding, go to the Emergency Department. If it’s a minor fall (with no injury) that occurs more than two times within six months, see your doctor or physiotherapist for treatment. 5) Depression – Be alert and look out for post-stroke depression which is common, with as many as 30-50% of stroke survivors developing depression in the early or later phases of recovery. Find out about counselling services. Don’t allow depression to delay the recovery process. 6) Support – Malaysian citizens with stroke can apply for government aid. Kad OKU is issued for free by the Department of Social Welfare. For more information visit www. jkm.gov.my THE DANGERS OF ATRIAL FIBRILLATION– A MAJOR CAUSE OF STROKE Health Atrial Fibrillation (AF or AFib) is an irregular and rapid heart rate, which has been shown to increase the risk of stroke by five times1. Rapid heart rate may also damage the heart if the condition is left untreated. When this happens, the heart’s two upper chambers (the atrial) beat irregularly - out of coordination with the two lower chambers (the ventricles) of the heart. Symptoms often include any of the following: heart palpitations, shortness of breath, weakness, dizziness or light headedness, and chest pain or pressure1. Some people do not exhibit any symptoms, hence are unaware that they have AF. AF attacks can come and go, or may even be persistent and present throughout the day. Although the condition itself isn’t usually life-threatening, it is a serious medical one that should be treated by a doctor. This is because AF can lead to blood clots in the heart that may circulate to your brain and lead to a blocked blood flow (Ischaemic stroke). The risk of stroke in AF arises with the presence of heart failure, high blood pressure, or if a person is elderly, female or diabetic. Anyone who has suffered a stroke and is over 74-years old, is at a greater risk of getting a stroke if AF is present.2 There are two parts to the treatment of AF: 1) The heart rate is controlled to alleviate symptoms of rapid heartbeats 2) Blood thinning drugs are given to patients to reduce their risk of stroke2. Living a healthy lifestyle also can help you reduce the risk of developing AF. Some healthy habits you can include in your life are: Keeping a healthy weight Regular exercise Eating healthy foods Avoiding smoking Limiting or avoiding alcohol Keeping blood pressure and cholesterol levels under control Reducing stress, as intense stress and anger can cause heart rhythm problems References: 1) Marini C, De Santis F, Sacco S et al. Contribution of Atrial Fibrillation to incidence and outcome of Ischemic Stroke: results from a population based study. Stroke 2005;36:1115–19 2) ESC guidelines for the management of Atrial Fibrillation. European Heart Journal doi:10.1093/eurheartj/ehs253 Partnering NASAM In Stroke Education 17 NASAM Needs Your Help Spotlight – Volunteer We are a non-profit organisation depending solely on public goodwill and generosity to give LIFE to stroke survivors. Many of those who come to NASAM are not able to afford post-stroke rehabilitation which is critical to every survivor’s recovery. Partner us and share a journey of a second chance. TO SERVE WITH LOVE How You Can Help By donating (one-off or monthly contributions) By sponsoring a therapist or a stroke centre By volunteering Lim going through the paces with survivor Christine Lim at the PJ Club. reach them and motivate them. Every breakthrough, no matter how small, is significant and must be recognised so that the survivor is encouraged to do better.” When some survivors come to him they keep their eyes closed and sometimes show no response for weeks. The challenge, he adds, is to continue acknowledging them as part of the group and keep going because one day they will sit up and willingly participate. “Each week you try something new…it could be sound or may be a song and finally, something clicks and you get a response. That moment is unforgettable. The satisfaction is indescribable.” And at the end of the day it is this satisfaction that keeps Lim on the roll. He recalls how years ago, when he felt he was ready to serve the community, he searched hard to find the right fit. He considered a few other organisations, communicated with them but didn’t really get very far. One day he read about NASAM offering to train volunteers in various fields. He signed up for the His message to stroke survivors is: “Keep up your spirits and will power.” To families and caregivers training and has never looked back. he says: “Exercise more patience and tolerance. Lim started as a volunteer physiotherapist but wasn’t Understand the needs of your loved ones and ensure able to cope well so, a month later, he decided to that they continue their rehab programmes when they switch to speech therapy. He conducts sessions in are out of hospital.” both English and Cantonese. “I am comfortable sharing my skills which have to be continuously Lim encourages family members to sit in during his updated so that my students are not bored and are sessions so that they know how to practise with the happy to participate,” shared Lim. “I enjoy learning survivor at home. “Dedication and commitment from from other speech therapists too. Over the years my the family is crucial. I welcome their feedback and experiences with stroke survivors have enriched my participation.” life. I am now more positive, tolerant and patient. I He also points out that sometimes carers get depressed have learned to live life at a slower pace.” and find it hard to cope because they are inundated Lim stresses that volunteers must have an open mind, with other commitments. When he meets them he be flexible and able to meet individual needs. “A encourages them to seek counselling at NASAM to volunteer must have a love and compassion for doing help them cope better. “They are frustrated and still service. You have to be committed, responsible and coming to terms with the upheaval that the stroke has caring. Each survivor is fighting a different battle and caused in their family. They too need help so they can you must be prepared to work hard to find ways to do better at caregiving.” 18 ✂ Lim, as he prefers to be known, has been a volunteer at NASAM for eight years now. He spends about two to three hours every Monday at the PJ Club, helping stroke survivors recover their speech abilities. Both painstakingly and patiently he takes them through exercises to help them with their vocal chords or to practice on sounds, words or sentences. A business owner, this energetic 50-something has found his niche and reveals that he derives great satisfaction from this service. Donation Form March 2016 DONOR PARTICULARS (PLEASE USE CAPITAL LETTERS) ONLINE DONATIONS Name/Company : You can also donate through our website at www.nasam.org I.C. No. : Address : City : HP : Home : State : Postcode : Office : Fax : Email : OR Donations can be made directly to our account (Maybank 5122 3152 0534). Please fax/scan your bank-in-slip to 03-7931 0087 or email to [email protected]. Please provide your name as per your MyKad so that tax exempt receipts can be issued. National Stroke Association of Malaysia | No. 12, Jalan Bukit Menteri Selatan (7/2), 46050 Petaling Jaya. Tel: +603 7956 1876 | Fax: +603 7931 0087 | Email: [email protected] | Website: www.nasam.org ✂ Stroke rehabilitation is a crucial part of stroke recovery. NASAM’s stroke rehabilitation programme focuses on the physical, emotional and social wellbeing of stroke survivors and offers physiotherapy, speech therapy, recreational activities, alternative therapy and counselling services. Contact your nearest NASAM Centre for more details. AGAINST THE WIND THE SPIRIT OF NASAM AS SEEN THROUGH THE LIVES OF STROKE SURVIVORS A copy of this documentary is available on DVD for a donation of RM30. NASAM also welcomes requests for corporate screenings. Please contact Nancy Yap at 03-7956 1876 or email [email protected] for more details. NASAM Head Office No. 12, Jalan Bukit Menteri Selatan (7/2), 46050 Petaling Jaya, Selangor Darul Ehsan, Malaysia. Tel: +603 7956 1876 | Fax: +603 7931 0087 | Email: [email protected] www.nasam.org NationalStrokeAssociationMalaysia Our Branches NASAM Petaling Jaya No. 12, Jalan Bukit Menteri Selatan (7/2) 46050 Petaling Jaya Selangor Darul Ehsan Malaysia Tel : +603 7956 4840 Fax : +603 7931 0087 Email : [email protected] NASAM Ampang No. 9, Lorong Awan 1 68000 Ampang Selangor Darul Ehsan Malaysia Tel : +603 4256 1234 Fax : +603 4251 5360 Email :[email protected] NASAM Penang No. 9-C, Lebuhraya Maktab 10250 Pulau Pinang Malaysia Tel : +604 229 8050 Email :[email protected] NASAM Perak No. 9, Lorong Pinji Off Jalan Pasir Puteh 31560 Ipoh Perak Darul Ridzuan Malaysia Tel : +605 321 1089 Fax : +605 322 4759 Email :[email protected] NASAM Malacca No. 5132-C, Jalan Datuk Palembang Bukit Baru 75150 Melaka Melaka Darul Azim Malaysia Tel/Fax: +606 231 0177 Email :[email protected] NASAM Kuantan No. A2134, Lorong Kubang Buaya 2 25250 Kuantan Pahang Darul Makmur Malaysia Tel/Fax: +609 566 8195 Email :[email protected] NASAM Sabah Kompleks Badan-Badan Sukarela Wisma Pandu Puteri KM4, Jalan Tuaran 88400 Kota Kinabalu Sabah Malaysia Tel : +6 088 261 568 Email :[email protected] NASAM Johor No. 59, Jalan Chendera Serene Park 80300 Johor Bahru Johor Darul Takzim Malaysia Tel : +607 223 0075 Fax : +607 223 0076 Email : [email protected] We warmly invite you to visit any of our eight centres to understand the determination and courage of stroke survivors and the commitment of caregivers, volunteers and staff. Call our centres: 9am-5pm (Monday-Friday) Closed Weekends/Public Holidays 20