Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Tuesday, April 26, 2022

Life after a stroke: The brain is self-healing, all you need to do is take care of it, says survivor

What poppycock! Brains don't self heal.

Life after a stroke: The brain is self-healing, all you need to do is take care of it, says survivor

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  • Thato had to relearn everything after a stroke, and made a remarkable recovery.
  • She has since moved from volunteer to co-director of the Stroke Survivors Foundation.
  • Thato has no regrets about what happened and is entirely content with how her life turned out.

“As a fan of Lira, I just see a healthy woman – in fact, she’s an empire of a woman. But after the news of her stroke, the only thing I could think of was her getting the adequate rehabilitation that she requires: does she have therapy that she needs, and is she dealing with a good neurologist?” says Thato Minyuku, a stroke survivor and co-director of the Stroke Survivors Foundation.

The South African singer Lira's family revealed last week that she suffered a stroke while in Germany for a performance. Sadly, it has caused the 43-year-old's speech to be affected.

“All I was thinking about was whether she has the support system, not just from the medical field, but from her family, and the community around her, just to make sure that whatever happens, she's not going to lose her legacy that she’s been building for years. I’m just hoping she’s getting the required therapy that she needs,” says Thato, who suffered a major stroke nearly ten years ago at the age of 33.

READ | I was fit, ate healthy, and had no risk factors – yet I had a stroke at 33. Here’s what I wish I had known

Thato knows what it feels like to endure and recover from the medical event that strikes nearly 240 people every day in South Africa.

Struggle to communicate

She has come a long way since then, but she never wondered whether this was a fight she might not win. From the outset of her rehabilitation, she fought the repercussions of the stroke with relentless courage.

When Health24 first chatted to her in 2019, she was being weaned off her intense stroke rehabilitation therapy, which included speech therapy, neuro-occupational therapy and occupational therapy for her global aphasia – a condition that occurs after a stroke (or head injury). Patients with aphasia can understand little or no spoken language and struggle to communicate.

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Image: Supplied

“Officially, my therapy has ended, but unofficially it hasn’t because of the work I need to do as a mother and as a director of the Foundation. I have to be so conscious of doing my best; the literature must come out near-perfect so that everything is clear regarding what I’m trying to enunciate and what my intention is,” she says.

Support system

Having a child has provided her with a form of lifelong therapy and rehabilitation, she adds. 

“I had to consciously make sure that everything I was saying came out correctly because kids are like copy-and-paste, so whatever you give them, they will give back,” she says jokingly.

But Thato has really enjoyed motherhood over the past two years. “It’s the best therapy I’ve ever had, because it’s caused me to be so cautious about everything I’m communicating to my son."

She also credits the support system of the Foundation in her journey to recovery. Says Thato:

What I love the most about working for the Foundation is that we, as stroke survivors, can communicate beautifully because we are not shy when we have difficulty enunciating a word. That’s the part that I love: it’s like communicating with ‘your people.’

And every stroke survivor must have access to that kind of support, she believes. The Foundation recently developed a mobile app called PDSS (Post Discharge Stroke Support), which provides support to stroke survivors. It is still being improved but is available to download. 

The Foundation will be hosting a golf day on 24 May this year. It will be their first fundraising event and they’re hoping to use the money towards improving the app so that it becomes accessible to all stroke survivors in SA, and, ultimately, survivors globally.

Picking up where she left off

Thato was a lawyer and in the process of completing her Masters of Laws before her stroke. Fast forward to 2018, she completed a short paralegal course to test her ability to study, which she completed successfully. 

She’s since decided to take the Advanced Human Rights course at the University of Pretoria. She has to get through nine courses this year and aims to focus on disability law within the context of South Africa. The course will begin next year and she's looking forward to the experience.

Just after a stroke, it's common for people to experience emotional changes. You may have drastic mood swings from one minute to the next. Your reaction to things may not make sense. This can be surprising and confusing to you and to those around you. But it's a normal part of recovery.

Awareness, awareness, awareness

Thato experienced a transient ischemic attack (TIA), one of three types of stroke, also known as a "mini stroke" in November 2011. This was a mere six months before the major stroke hit. And evidence suggests that the incidence of ischaemic stroke (the most common kind of stroke) in young adults (18-50 years) is on the rise.

“What is so important right now, is what we’re pushing for at the Foundation: awareness,” says Thato. “If I were to speak to any young South African or global citizen, they’ve got to be aware of the symptoms of having a stroke; how to prepare when having a stroke; and they have to make sure that their family and close friends are aware of it.”

In 2019, statistics indicated that one in six people will have a stroke in their lifetime. This has increased to one in four. “So if we don’t take awareness seriously, there’s going to be a problem,” she says.

Effects of stroke

Stroke is one of the leading causes of disability worldwide. Says Thato:

For example, I’ve got difficulties with aphasia and neuro-fatigue. There are people who have difficulties with mobility, and others who have difficulty swallowing, or being blind or deaf. A stroke can cause all kinds of multiple disabilities but when people are more aware they’ll take action immediately.

The neuro-fatigue is unlike physical tiredness or exhaustion, she says. “Tiredness and exhaustion will let you know when it’s time to rest, but neuro-fatigue gives you about one minute until it hits you badly.”

When it happens, the impact of the aphasia becomes evident, when one has difficulty articulating a word or sentence.  

'Your body is self-healing'

Recovery time after a stroke is different for everyone. But Thato stresses the need for patience. “All you need to do is persist and allow time to work on your recovery. I literally had to go back to grade R." She had to learn the verbal difference between "d" and "t", "b" and "p", etc, and that "heaven" was not "even", "few" was not "view", and "felt" was not "left", for example.

She says:

The brain and body are self-healing. All you need to do is take care of them and they will take care of you.

She doesn’t have any regrets about losing the life she had before the stroke. In fact, she’s quite firm in her belief that her experience of a stroke and the therapy she received over the years have given her a new, happier life.

“I have no negativity about what happened and nothing to complain about. I'm not the same person I was pre-stroke – but I'm much better now because I’m more conscious of every single step and action I take to make my life thrive.”

Prayers for Lira and other stroke survivors

Thato's thoughts and focus shifts to Lira again. “I read about Lira two days ago. I don’t know if she’s in a hospital right now, but I know she will only feel it [reality] when she’s been discharged from the hospital. 

“Because it comes with every stroke survivor, the minute you’re discharged from the hospital, that’s when you see the wear and the tear and the burden of the stroke itself. And that’s when your family and support group see it. You’ll literally have to adapt to a new you in order to live the life that you want to live.”

She continues: “All my prayers go out to Lira and other stroke survivors. As always, they are more than welcome to contact us at the Stroke Survivors Foundation … Nobody is alone.” 

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READ | Strokes are on the rise among younger people: A neurologist offers important tips to be aware of

READ | With more young people having strokes, be alert to these warning signs

READ | 15 minutes matters with strokes

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