Stroke is not terminal: How caregivers and health professionals can help survivors recover from the impacts of a stroke

Greetings, listeners, and welcome to the program. My name is ____. Today we will be talking about stroke and the therapies designed to help stroke patients recover from it.

Most Ugandans have little knowledge about stroke, according to Dr. Ibrahim Bukenya, the head physiotherapist at the Stroke Rehabilitation Center, the only stroke organization in Kampala, Uganda. He says that, while stroke has always been with us, few people have even heard of it, leave alone knowing what it is.

Stroke is a medical emergency during which the brain is damaged due to lack of insufficient oxygen. Oxygen can fail to reach a particular part of the brain because of a blood clot or a burst blood vessel.

According to a study by the Ministry of Health, one of the major causes of stroke in Uganda is high blood pressure. Doctor Gerald Mutungi, head of Non Communicable Diseases, Prevention and Control at the Ministry of Health says: “High blood pressure is mostly caused by too much inactivity that comes with modernity and economic development. Statistics show that one in four Ugandan adults has high blood pressure and 60% of those don’t even know that they have it. High blood pressure has no symptoms at all, so Ugandans don’t have to seek medical attention. That is, until it causes them to suffer a stroke.”

I visited several stroke patients and their caregivers as well as medical professionals in Kampala and Wakiso districts, to learn about the impacts of stroke on survivors and the therapies that bring recovery. One of the patients I found admitted in a rehabilitation centre was 70-year-old Ali Lutaaya. Dauda Sembatya, his younger brother and caregiver, joined us midway through the interview.

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KNOCK ON THE DOOR

Hello, I am looking for Ali Lutaaya.

You’ve come to the right room.

I am a journalist, here to learn about stroke. Would you allow me to ask you a few questions?

As you can see, I have all the time.

Thank you so much. The doctor told me you suffered a stroke and this is why you were admitted here. Tell me what happened.

It was around 8 a.m. on a market day in my village when it happened. I was skinning a cow with my fellow butchers in preparation for a very busy day of selling meat when all of a sudden I felt an abrupt loss of energy. I dropped the machete and lowered myself to the ground and tried to sit and rest—but I realized that I was falling over like a sack of beans. I held onto some grass and managed to sit and rest.

What was running through your mind at the time?

I was really confused. I had rested well at night and I was full of energy all morning. This sudden loss of energy was truly shocking and enigmatic to me.

Please continue.

I took a rest while my friends made fun of me. And after about thirty minutes, my energy returned fully and I resumed my work. I sold the meat in my butchery until around 1 p.m. when I fell again, only this time I completely lost all energy.

What do you mean? You became unconscious?

No. I could see, hear, and talk. I just lost energy in my muscles. It was as if God had unscrewed all the nuts in my joints. But I was fully aware of the goings-on. While people came rushing to my help, I heard one of the men say, “That is stroke.”

What came into your head when you heard that?

I was even more confused. I had never heard of stroke before. So I asked him what he meant and he said that there is a disease called stroke, and it looked like I was suffering it. He had seen someone suffer it before, and he was the only one who knew something about it. Had it not been for that man, I would be home lying in bed thinking I was bewitched.

So then what happened?

They called my brother Dauda to come and help take me to the health centre. The nurse at the health centre confirmed that I had indeed suffered a stroke, which brought me so much relief. One, it was not witchcraft, and two, I knew then that I was going to swallow a few tablets and go back home. (LAUGHS)

(LAUGHS) You soon realized you were wrong.

I was very wrong. The nurse told us that there was no medicine for stroke at the health centre and referred us to Mulago hospital, two hundred kilometres away. That’s when I realized stroke was more serious than I had first thought. Ordinarily, she would have referred me to Masaka Hospital, and not the National Referral Hospital.

What happened at Mulago?

I was admitted, given some medication, and after two days, I was discharged to go back home. This shocked me because I had not seen any change to my condition at all. I had lost control of my back muscles, so I couldn’t sit up. I had lost control of my right leg, so I couldn’t stand or walk, and my right arm hung limp, with my fingers clumped together in a fist. The medicine had not changed anything and now I was being discharged.

That must have disappointed you.

Absolutely. We asked what they expected us to do since we hadn’t been helped, and they advised us to find a stroke rehabilitation centre. And that is how we got here.

And you see a lot of improvement?

(LAUGHS) My friend, when I came here, the only ability that remained in my life was talking. I was so floppy, you could roll me up and put me in a sack. Now I can sit, I can stand, I can walk, I can stamp my feet, and see, I can swing my right arm.

You couldn’t even swing it when you came here?

How? It was completely dead from the shoulder. I felt like I had a big stone hanging on my shoulder. Now I can slightly control my shoulder muscles, and I know that, slowly, I will regain control of all the muscles in my arm. See, my fingers are starting to unclench.

Wow! So there has been a lot of improvement.

I am so happy with my progress for sure.

What do you think has caused the improvement?

Ho! We do a lot of physical exercises like schoolchildren. It is all we do in this centre. All those patients you saw are here to do exercises.

I thought patients are admitted to be given medicine regularly.

The medicine is minimal. On the most part, it’s the physical workouts that help a stroke patient to recover.

What kind of exercises do you engage in?

Rolling over, jumping, walking, swinging, raising arms, spot marching, and so on. By the way, each patient has exercises specific to them, so I am talking about mine here. I have seen other patients who are learning how to name pictures like primary one children.

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My brother, I heard that you have a visitor. (JOKING) Are you now going to be in the news?

I am going to be in the news. (LAUGHS) This gentleman here is a “news man.” You tell him how I was when I first came here.

Hello, how are you?

I am okay. Thank you for visiting us.

So you are his caretaker?

Yes, I am. He’s my elder brother. I am doing what any brother would do.

How has it been for you as the caregiver? How long have you been here?

We have been here for over three months now. When we first came, I didn’t think we’d stay here for this long.

You expected him to heal very fast?

No, I thought he would die very fast.

LAUGH

Why?

First of all, I had never heard of the disease he was suffering from so I didn’t know what to expect. Second, he was really in bad shape. The stroke really knocked him out.

What do you mean?

He couldn’t stand up or walk, he couldn’t sit or turn himself, he couldn’t eat by himself … the only thing he could do was lie down motionless and talk.

BOTH LAUGH

So you helped him do everything?

From feeding him to going to the toilet to bathing. Everything. Even waking up in the night to turn him in bed. I was really impressed and relieved that at the end of two months of physiotherapy, he had regained control of much of his body—and that the only help he needed from me was helping him walk. And maybe washing his clothes, which I am still doing because his right arm is still further down in the recovery process.

But my fingers are unclenching now. In no time, I will be able to do everything for myself.

Wow. So do you see yourself back to work in the near future?

Yes, definitely. With the progress I have made, if I keep doing the exercises, I should be fine in a few months.

The doctor actually said that he will release us soon. But I am not sure when.

Mr. Ali, do you feel ready to go home?

Well, I still struggle so much when I walk. And my arm is only starting to resurrect…. I’d be concerned if I left now. But I know all the exercises that have improved my life so far. I know that if I went home now, I would be able to improve on my own. It’s just that here, I have nothing else to bother about except the physiotherapy.

You really believe you could do the exercises on your own and fully recover from home?

I believe so. I get minimal support from the therapists these days.

Thank you so much for your time. You have taught me so much.

KNOCK ON THE DOOR. DOOR CREAKS OPEN.

Hello, doctor.

Hello, please take a seat. How was Lutaaya?

His story is incredible! I still can’t believe what he told me—that three months ago he couldn’t turn in bed, but now he can walk without support…. That is unbelievable.

It is very believable. Stroke is very manageable, by the way. The problem is that most people never seek medical attention for it. Many people, when they see their loved one all of a sudden unable to stand up, they think he has been bewitched. So they go looking for shrines … some even abandon them in their houses. We need a lot of sensitization.

There’s so much I didn’t know. So going back to Lutaaya’s case, how do you get someone who has been so damaged by stroke to recover that well so fast?

Well, when it comes to stroke recovery and how fast it happens, that is dependent on the patient’s will. Lutaaya’s will is very strong.

Tell me about the treatment.

The greatest percentage of stroke treatment is the different therapies. Drugs have their place in the treatment. but mostly the treatment revolves around retraining the brain.

What do you mean “retraining the brain”?

Well, when stroke happens, a part of the brain cells die because of lack of oxygen. When this happens, the patient loses control of the body part that was controlled by that section of the brain that died. What physiotherapy does is train another section of the brain to take up that responsibility.

Hold on … I thought that the treatment resurrects the section of the brain that died.

No, the dead section remains dead. In fact, even a brain scan of a stroke survivor will show that section as a scar on the brain. But the human brain is just great. A section of the brain can actually be trained to take up that role after the original control centre becomes damaged by stroke.

So what is involved in the therapy?

There are five main therapies in the treatment of stroke: physiotherapy, occupational therapy, recreational therapy, psycho-social therapy and speech therapy.

What does each one of them do?

First of all, each therapy focuses on a specific type of damage in the patient’s body.

What kind of damages does stroke cause?

Several. Loss of speech, loss of balance, paralysis of one side or both, inability to control the bladder or bowels, inability to walk, inability to turn in bed, inability to write, failure to swallow and eating problems, even mental disorders, and so on.

When I was interviewing Lutaaya, I got the sense that other stroke patients are not always as lucky. He believes that him losing control of his right side is nothing compared to other patients he has seen here.

Lutaaya’s stroke was mild. While he lost control of his right side, including both limbs, his face was not affected, or anything else for that matter.

What would have happened if the stroke had been severe?

On top of losing control of his limbs, he could have suffered a lot of other damages to his body like the inability to control his bladder and bowels, inability to control facial muscles, loss of speech, brain damage, and all sorts of injuries.

So a patient that suffers one kind of damage needs one type of therapy—is that right?

Right. And a patient that suffers from several kinds of damage gets several therapies. This is what happens to a larger number of patients, in my experience.

What is physiotherapy aimed at achieving and what is involved in it?

It is mainly aimed at restoring strength in paralyzed areas, mostly arms and legs. So in physiotherapy, we train the patient how to regain balance, to walk again, to bend their joints and turn their body, to raise their arms and hold things … generally to regain control of the muscles. This is done through regular physical exercises.

Let’s talk about occupational therapy. What is it?

This treatment is aimed at teaching skills to patients. Stroke can make you forget skills you had before, like how to write, bake, feed, wash, sew, etc. So we give beginners’ lessons to patients so they can regain their skills. And over time, they do regain their skills.

And what is involved in speech therapy?

A lot. In speech therapy, we retrain patients to talk, read, count, interpret puzzles, and so on. Depending on whether the stroke is mild, moderate, or severe, there are exercises for the tongue, others for the vocal cords, others for the entire face, and others for the throat.

That’s a lot. Speech therapy seems to me to be the most complex.

All therapy is complex, that is for sure. That’s why we have special teams for each therapy.

So recreational therapy. What is that?

This one is where we follow up on stroke survivors to make sure they integrate back in society. We organize events where we have fun and games with the patients and survivors.

That doesn’t sound like medical treatment.

It actually is. Most stroke patients, because of the damage that stroke inflicts on them, lose self-esteem and confidence. At these events, we encourage them to believe in themselves and make friends. Many times, survivors will feel like staying home while everyone else has gone off to a wedding. I always encourage them to go for all sorts of gatherings because this helps them a lot. Many times, I have had to attend parties so I can offer moral support to one of my patients.

Wow. So stroke treatment is all about these therapies?

Mostly, but there are other steps to take in the full recovery from stroke. For instance, you can’t underplay the importance of caregivers at home or rehabilitation nurses here at the centre. Both give a lot of physical and moral support that would leave a big gap if they were absent. Nutritionists, psychiatrists, even general physicians all have a big part to play.

Thank you so much, doctor.

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We talked to stroke patient, Ali Lutaaya, and his caregiver, Dauda Sembatya, about the challenges that patients and caregivers face due to the impacts of stroke on survivors.

We also talked to Dr. Ibrahim Bukenya who works at the Stroke Rehabilitation Center in Kampala, Uganda about the most common impacts of stroke and the therapies that relieve the patients of those impacts.

On top of what we have learnt in this program, it’s important to know that time is of the essence when it comes to the full recovery of a stroke patient. The moment someone suffers a stroke, they should be rushed to a hospital. There is no first aid you can do as a non-medical person. Stroke is a medical emergency. To determine whether someone has suffered a stroke, look at the person closely. If the face is uneven between the right and left side or there is drool on the mouth, if the patient can’t raise their arm above their head, if they can’t speak normally, then waste no time in rushing them to hospital.

We have also heard about the different therapies for the different kinds of impacts. The caregiver is very important in the full recovery of a patient because almost more than anything, stroke patients need a lot of emotional and physical support. Sadly, most people are ignorant about stroke, some having never heard of it at all.

Dear listeners, my name is________, saying goodbye for now. Catch me again next week, same time, same station, for the health program. Goodbye.

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