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Ssenkandwa battles cerebral palsy in spite of Covid-19 hitch

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For James Ssenkandwa, the lack of adequate knowledge about cerebral palsy and how to handle people with the condition has caused untold psychological stress to families with people suffering from it.

Over the past months, the situation has been compounded by the Covid-19 restrictions, something that prompted him to create a response programme for people living with cerebral palsy and autism in Kampala, Wakiso and Mukono districts, writes Sadab Kitatta Kaaya.

What drives a mother to view death as the only reprieve for her child, one she is willing to even personally deliver? Nothing, most mothers will vehemently argue; but for one mother, cerebral palsy pushed her to that edge that she is not proud of. Lack of information, inadequate medical care and social stigmatization, all compound the challenges parents of children born with cerebral palsy face.

Anna Maria (not real name) received the blunt force of them eight years ago when she was tempted to take her son’s life, thinking that would end his misery.

Anna Maria’s son was born with a yellowish skin. At three days, he got a fever that kept them at Mulago hospital for about three months before they were discharged to return home at Lugoba-Kazinga in Kampala’s Kawempe division.

The days that followed presented the worst experience for any mother – more so, a low-income one. Without enough provision, she lost all hope and the best she could think of at the time, was to end her son’s life by giving him an overdose of drugs.

She, however, could not withstand the agony of seeing her son die at her hands and thank goodness, she immediately made him to vomit the drugs she had just administered to him.

Eventually, through her numerous visits to Mulago hospital, she learnt that her son has ‘CP’ – cerebral palsy, a neuro-developmental condition comprising a group of permanent disorders of movement and posture that are attributed to non-progressive disturbances of the developing foetal or infant brain.

This was just one of the many testaments Ssenkandwa, the director of Cerebral Palsy and Autism Renaissance Organization (CPARO), found during documentation of cerebral palsy cases in Kawempe suburb last week.

With funding from the Queen’s Commonwealth Trust (QCT), Ssenkandwa’s organization has been implementing a Covid-19 response programme for people living with cerebral palsy and autism in Kampala, Wakiso and Mukono districts.

According to the Centres for Disease and Prevention Control (CDC), a US government agency, symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all, and might need lifelong care. On the other hand, a person with mild cerebral palsy could walk a little awkwardly, but not need any special support.

DAMNING STATISTICS

Angelina Kakooza-Mwesige, Hans Forssberg, Ann-Christin Eliasson and James Tumwine in their April 2015 research paper titled: Cerebral palsy in children in Kampala, Uganda: clinical subtypes, motor function and co-morbidities, note: “Despite lack of reliable information on the prevalence of CP in Uganda, there is reason to believe that this condition is significant in view that for every 1,000 live births in Uganda, approximately five children do not live to their first birthday and four women die during pregnancy and its related complications.”

The CDC notes that besides having problems with movement and posture, many of the people with CP suffer from conditions such as intellectual disability; seizures; problems with vision, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

CP has been classified in four types, according to the main types of movement disorder. First is spastic cerebral palsy which affects about 80 per cent of people with CP. People with this condition have stiff muscles, especially in the legs, which results into awkward movements.

The second type is dyskinetic cerebral palsy. People with this condition have problems controlling the movement of their hands, arms, feet and legs, finding it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing and talking.

This is the condition that Mariam Nabukenya’s nine-year-old son suffers from.

“To sleep, I have to give him a sleeping pill, and feeding him is a hustle,” said the resident of Lugoba-Kazinga, Kawempe.

The third type is ataxic cerebral palsy, which causes loss of balance and coordination. People with this condition are unsteady when they walk, and tend to have a hard time with making quick movements.

Some people have symptoms of more than one type of CP – a condition termed as mixed cerebral palsy. The most common type of mixed CP is spastic-dyskinetic CP.

MARGINALIZED

People with cerebral palsy are among the most marginalized persons with disabilities in Uganda since the condition is not largely recognized by national policies and statistics as a major category of disability.

Much as the seven-year-old daughter of Oliver Mugalu, another resident of Lugoba-Kazinga, does not have any speech impairments, she has failed to find a school in her neighbourhood that can enrol her.

“I wanted to take her to school but the schools around declined to enroll her because of her condition yet she doesn’t have speech impairment,” Mugalu said.

It gets worse when children with CP want to play with other children. “They don’t freely associate with children with CP because society has taught them [the regular children] to look at those with CP as outcasts,” says Nabukenya.

This has taught parents to keep their children indoors, said Zulaika Nansubuga, a mother to an eight-year-old son suffering from CP.

“The stigma is too much and it has made some parents to look at their children as a problem,” said Nansubuga, who also blames this to lack of information about the condition. Worryingly, Lugoba-Kazinga area had more than 10 children with cerebral palsy.

Ssenkandwa says that the lack of adequate knowledge about CP and how to handle people with the condition has caused untold psychological stress to families with people suffering from CP.

“Having adequate knowledge would help them to cope with the demands of taking care of children and adults with cerebral palsy as well as ensure that their rights are not violated,” Ssenkandwa said.

RAY OF HOPE

“Most people with CP and autism don’t have access to medical care and other social amenities. Most drugs are expensive and unavailable at most health units, especially in rural areas which affects their social, psychological and physical wellbeing,” Ssenkandwa said.

It does not stop at medical care, said Eva Nakimera, a mother of three, “It is also too expensive to feed children with CP as they require a special diet given their compromised immunity.”





Source – observer.ug

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Year of the Overcomer-Prophet Elvis Mbonye

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The eagerly awaited first fellowship of controversial Prophet Elvis Mbonye left viewers shocked as he declined to issue his now famous prophecies citing a refusal to settle for the new normal. In an on online service watched by thousands, the Prophet said him prophesying would “ be a concession to gathering online, rather than physically” further stating that it is not the will of God that church should meet online!

The Covid-19 SOPs given by the government and Ministry of Health have heavily impacted gatherings and as a result, ministries with large congregations have resorted to online services. The prophet however insists that this is a ploy to diminish the influence of the Kingdom of God.

He however proceeded to give the Prophetic Word of the year , saying “This is the year of the Overcomers” amidst cheers from those present. He also stated that this would not be a “gloomy” year, probably meaning that this would be a good year. Given that many of his prophecies have actually come to pass, should we pay more attention to him? We eagerly await the prophecies this year.

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Kabuleta blasts Media over “COFIT” reporting in new rant.

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Presidential hopeful Joseph Kiiza Kabuleta has expressed dissatisfaction with the media over what he says was”alarmist reporting” over the Covid-19 pandemic which he calls “COFIT” a term we believe is a wordplay between covid and profit, a view held by many that claims that the disease was exaggerated to maximize funding and corruption. Kabuleta has come to be known for his straight shooting style and admirable command of facts and policy, even being touted as the “smartest candidate” in the race.here is the full statement:

MEDIA AND THE COFIT ENTERPRISE

By Joseph Kabuleta

“Don’t look at where you fell, but where you slipped”
AFRICAN PROVERB

We know where the media fell. They fell when they were caught in the crossfire between opposition politicians and trigger-happy security hitmen; when they were unfairly targeted as they went about their noble duty of covering this explosive elective season. Sadly, some journalists are nursing wounds; others weren’t so lucky.
But it’s important for us to understand where they slipped.

If someone is sitting by the roadside sipping on his brew and he sees a gang of people sprinting past him, as if for their lives, it’s understandable if he impulsively joins without asking questions. But if after nine months he is still sprinting, and has still not asked any questions, then there’s something terribly wrong with him.

When we first went into lockdown in March, it was probably the best course of action because we didn’t know the full extent of the Cofit threat. But in the first 90 days, it was clear to all and sundry that it was never going to rank among Uganda’s top health challenges. And that’s not my opinion.

The Daily Monitor on July 15th quoted Dr Baterana Byarugaba, the Mulago Hospital Executive Director, describing the Cofit strain in the country as a mild form of flu which does not require hospital admission since it can be treated at home or in lower health facilities.
“l told Ugandans right from the beginning that the type of coronavirus we expect in Uganda is the mild one. It can be treated at health centre II, III, IV or the district hospital,” the top Medic said.

I read the story with glorious delight supposing that finally common sense, (or should I say science sense) would inform our decisions as a nation. But it’s difficult to know where science stops and politics starts. It’s become clear over the months that Cofit is not just a virus that causes respiratory problems, it’s a lot more than that; it’s a weapon in the hands of politicians that gives them power beyond their wildest dreams. In America, for instance, Democrat Congressman Jim Clyburn said Cofit is a “tremendous opportunity to restructure things to fit our (leftist) vision” while actress and activist Jane Fonda said that Cofit was “God’s gift to the left.”

Our media could have taken the side of poor Ugandans by showing the immense suffering and death from preventable sicknesses that resulted from the harsh Cofit measures; they could have highlighted the plight of businesses permanently closed and workers rendered redundant and sent back to villages. They could have wondered why truck drivers were testing negative in Kenya and positive in Uganda, or wondered why Cofit deaths only started after Prophet Museveni showed us a macabre lineup of coffins in his address, or why every celebrity who dies since then is ruled as Cofit (no autopsy required)

They could have told us that according to Worldometer, Cofit has a 0.28% mortality rate (or a 99.72 survival rate) and that it doesn’t rank anywhere in the Top 10 of Uganda’s health challenges; they could have told us that a child dies of malaria every two minutes (and Uganda accounts for 3% of the world’s malaria fatalities), which means that more Ugandans die from mosquitoes in ten days than Cofit has (allegedly) killed in the nine months it’s been on our lips.

Ugandans (especially of my age) have lived through real pandemics. As a young man growing up in the early 90s, nobody had to remind me that AIDS was real. Goodness me, I knew it was! And I didn’t need police to force me to wear protection, I knew the consequences. The fact that we are constantly being reminded that ‘Cofit is real’ tells a story of its own.

The media could have asked why Uganda, with one of the lowest Cofit cases or deaths, still holds on to a 9:00pm curfew when Kenya moved to 11:00pm in September, as did South Africa and several countries. The media could have told us that Malawi, Burundi, Tanzania and, recently, Ghana all held successful elections with full blown campaigns in 2020, and we aren’t hearing people dropping dead from Cofit in any of those countries. May be they should have tried to find out if people are dropping dead in Tanzania which altogether ignored all Cofit measures and went on to acquire middle-income status while Ugandans were still in lockdown.

They could have told us about the asymptomatic Cofit patients who were filmed dancing the night away in hospital wards, or of people suffering from other diseases who dare not go to hospital because they fear to be given a fake Cofit label and held for two weeks against their will.

The media could have told us that Cofit deaths across the world have been grossly inflated. Minnesota lawmakers say Cofit deaths could have been inflated by 40% after examining death certificates (according to The Washington Examiner) while Fox News reported that in Colorado 45% of Cofit corpses “were also found to have bullet wounds”.

They could have told us that 22 European countries, all of which had tens of thousands of Cofit deaths, opened their schools in the fall, and there has not been any reported spikes in cases as a result. They could have told us that more people have been killed by security men enforcing Cofit measures than by the virus itself.

Well, they could have…but they didn’t. And that’s where they slipped.

Instead they chose to go down the path of alarmist reporting and in so doing became, inadvertently or otherwise, enablers of Uganda’s trillion-shilling Cofit enterprise. Like Squealer in George Orwell’s Animal Farm, the media used flowery language to drum up fear by keeping people’s eyes transfixed on swelling numbers while the thieves carried their loot and stashed it away, and loan money was distributed among family members or used in regime prolongation.

The recent joint television news bulletin, and the adverts that followed, were the peak of hysterical reporting. “Zuukuka Tusaanawo” (wake up, we are perishing) screamed an advert featuring top media personalities. What a load of……(fill in appropriate word).

Remember, all the tyranny we have witnessed in this season has been done in the name of Cofit, and such sensationalist reporting justifies it; it gives dictators like Museveni the perfect pseudo-moralistic cover to unleash their most despotic fantasies while actually pretending that it’s for the good of the people. Unfortunately, the terror has now spread to the very media people whose hyperbole enabled it in the first place. There is such a thing as the law of cause and consequence, after all.

Instead of the media walking out of pressers and threatening to boycott government functions, let them threaten to stop all Cofit reporting. Museveni himself would come running with chocolate in hand.

If the president extended curfew by just two hours, for instance, he will have put as many as 200,000 Ugandans back to work especially in the hotel, restaurant and entertainment industries; but he doesn’t care, and sadly neither do many middleclass Ugandans who suppose that it’s their moral obligation as responsible citizens of the Global Village to fret over Cofit just because their ‘fellow citizens’ in Europe and America are doing so. Of course they can afford to do that because their corporate jobs have, for the most part, insulated them from the devastation of the government-instituted Cofit measures. They can enjoy working at home, beer in hand, as they listen to CNN and BBC and still expect the full complement of their salaries at the month end, and that makes them feel every bit like ‘their brothers’ overseas.

Such aspirational conformists are more likely to be offended by my stance on Cofit because they haven’t traversed crook and creek of this country and seen the damage reigned on this fragile society; not by the virus, but by the measures supposedly instituted to mitigate it.

You see, perhaps the most enduring damage this regime has done to our society is creating a three-part hierarchy of class and needs. At the zenith are a handful of connected ‘1986 generation’ and their families who feel entitled to all power and wealth. Beneath is a small (and shrinking) middleclass, and at the bottom of the pyramid is a mass of peasants. Every society, to various degrees, is ordered in the same fashion, but what makes Uganda unique is that the megalomaniacs at the top don’t give a nickel about the plight of the middleclass and the middleclass in turn don’t care a bit about the quandary of the peasant. The charlatans at the top will impose punitive taxes on the middleclass, then dip into NSSF coffers at a whim to share out their savings, and no one can stop them.

And the middleclass Ugandan, armed with his medical insurance, and safe in the knowledge that his wife is unlikely to die in child birth (20 Ugandans do EVERY DAY), and his children are very unlikely to die of malaria (20 do EVERY DAY), or from malnutrition (thousands do every year), will go around trumpeting Cofit because it’s more relevant to his status than malnutrition or malaria.

I could just as easily go down that path. I could also close my eyes to mothers failing to get breast milk because they can only afford half a meal a day (black tea with a piece of cassava), and the malnourished babies that emerge as a result; I could close my eyes to the teenage girls that were given out in marriage because schools closed, or those given out to meet family needs; I could ignore the fact that our president is opening 5-star markets in cities which have 1-star referral hospitals; I could also choose to look the other way and enjoy my middleclass lifestyle, but as an aspiring leader, I cannot.

As a leader, my aspiration is to remove the privileged/entitled class, to expand the middleclass (and their income), and to shrink the peasantry; but mostly to blur the lines that separate each category.
It doesn’t bode well for our country if the average Corporate Ugandan knows more about racism in America than about extreme poverty in Teso or Busoga because that disqualifies him/her from the solution to those local problems.

And finally, I have come to the realization that the biggest pandemic afflicting our country is poverty and the virus that causes it is called M7-1986. Vaccination against it is January 14

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Muntu Blocked in Kamwenge

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Alliance for National Transformation presidential candidate Gen. Mugisha Muntu has been blocked from campaigning in Kamwenge according to a statement he released earlier today.Below is the full statement:

STATEMENT
Today in Kamwenge, as we have done since the start of the campaign season, we headed out to speak with the people. We had earlier in the week agreed on the venue with security agencies. No one had anticipated that it would rain as much as it did, making it impossible for us or the people to access.

After identifying an alternative place only 100m away from the original venue, negotiating with the owner and communicating the same to the public, we headed to the second venue only to be stopped by police.

Our policy has always been to do all we can to be reasonable, even in the face of unreasonable action on the part of the state. We engaged the police leadership in a civilized, respectable manner well knowing that they intended to not only frustrate us, but cause us to act in ways that would give them an excuse to cause chaos. This was on top of their intimidating the radio we had booked and duly paid to appear on.

While we are confident that we are on the right side of both the law and reason, we have chosen not to endanger the lives of our supporters or the general public by escalating the situation. We will do everything humanly possible to avoid a single life being lost or blood being shed on account of our campaign.

And yet this truth remains: the regime’s days are numbered.

ChangeYouCanTrust

CountryBeforeSelf

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