Blog 48: Diagnostic Dilemmas

I take a thorough history and assess the boy; we are at the high school and Thato is translating for me. He remembers his troubles began in primary school when walking became difficult. Over the years things became more problematic and eventually he had to use crutches and leave his local school as the grounds and toilet facilities became too testing for his ability and the teachers believed he was being lazy. He came to Saint Angela, where disabled facilities made his life easier, and the high school is only a few hundred metres away. He still had to get up very early so he wouldn’t be late for school, as even this short distance was taking him over 40 minutes to cover using his crutches. Gradually it became too much for him and this year he had to start using a wheelchair and needs someone push him as he can’t self-propel. 

 He says he can’t self-propel because he hasn’t learned how to yet. He says can’t independently transfer because he hasn’t learnt how to yet. There is a desperation in his conclusion that he only needs someone to teach him and he will be able to do these things one day, but I know he can’t be taught. His legs and arms that can’t even lift their own body weight will never be able to do these things. His progressive weakness and fatigue, his problems with breathing, heart palpations, enlarged calf muscles, history of onset can only lead to one conclusion, he has muscular dystrophy.

 

Muscular dystrophy is a progressive muscle wasting disease caused by a genetic mutation, usually passed on by the mother to their sons. There are many different kinds but from his history I suspect he has the most common type, Duchenne’s (DMD). I ask him if he knows what is wrong with him and he says he doesn’t know and he doesn’t understand why he can’t do things anymore and is getting worse. He has tears in his eyes and hangs his head. I tell him we will come out to visit him at home and discuss his problems with his parents. It’s a dilemma because I am going to take away any hope he has of getting better and replace it with the bleak realities of a progressive disease in country which offers him and his family little assistance to get through the toughest of times. 

 

In the UK expert medical specialists and therapists are available to support patients with muscular dystrophy, together with power chairs, hoists, support groups, counselling, respite care, disability transport and all manner of things to try and ease the burden of this tragic disease. Here in Lesotho the boy tells us he has received some vitamin supplements and told to go to physiotherapy and do some exercises. This stopped back in 2019 and now the family are basically on their own and must find the strength to support each other as best they can. Easter weekend is coming so the boy will be going home. Thato calls his mum and arranges an appointment, and we head out on Good Friday. 

 

The rough road gets muddier and eventually I park rather than risk getting stuck in a bog. The boys brother comes out to meet us and guide us on foot to the house, I regret I have put on my best trainers, while Thato regrets she has put on her white shoes. The house is in the middle of a row of one room buildings with tin roofs, typical of the housing poorer people live in Lesotho. In this one room all family life takes place. We knock on the door and mum invites us in. There is a double bed taking up most of the space on which the two teenage boys sit. The rest of the room is crammed with a wardrobe, a kitchen cabinet, a table with a washing up bowl and a two ring gas burner on it, boxes of clothes, tubs of maize and various food stuffs, a wheelbarrow and spade, a spare door propped against the wall with a picture of Jesus and an Angel stuck to it, vegetables and beans spread on sacks the floor and a bench on which Thato, and I are invited to sit. 

 

The mother sits opposite us, a slim woman, her face tired and drawn, a cross around her neck and clasping a battered straw hat in one hand. We introduce ourselves and Thato translates for me and explains why we are here. I ask if they have the Bukana, the boy’s medical book, unfortunately it has been left at Saint Angela, so I ask her to tell us about his medical history and what has happened over the years. As the mother recalls everything slow tears of desolation run down her cheeks and continue for most of the two hours we are there. She picks up a flannel and uses it to occasionally wipe her face when the tears get too much. I want to reach across and try to console her but feel that is culturally not the right thing to do and might embarrass her and the boys. 

 

The boy sits on the bed with his head down pretending to read a newspaper but taking it all in. His mother’s moment of greatest despair comes when she tries to explain how she has to carry him down the muddy track to the long drop toilet, I can’t imagine how terrible it is for her or her 16-year-old son. He has no wheelchair, no independence, no dignity, and she must watch her boy slowly losing the most basic of capabilities. She says the doctors have told her he has a disease passed on in the family and that he would end up in a wheelchair. She says she has tried to get a wheelchair, but to no avail. He is borrowing one from Saint Angela when he is at school, but he can’t bring it home and anyway it’s too small for him and hurts his legs. 

 

I try to gently explain about the nature of DMD and how the progressive muscle weakness affects not only a person’s mobility but also the heart and respiratory muscles. I suggest to her some of the practical things she can do to help her son, some passive stretches to keep his joints from stiffening up, posture awareness so he can breathe more easily, good nutrition and help with activities of daily living so he can preserve his energy, as even small amounts of activity quickly exhaust him. For his part I encourage the boy to do some deep breathing exercises to keep his lungs fit and try to reassure him that it is not his fault, it’s not that he’s being lazy, or not trying hard enough. 

 

The boy also needs additional help with his activities of daily living when he stays at Saint Angela so he can save his energy for school, but the care staff are over worked and underpaid and unable to give him more time. Sister dropped him off at his last hospital appointment and left him there alone for half a day. Without being able to self-propel he was totally stuck for four hours, long after the examination was completed. His mum is concerned that any complaints about this lack of care will result in his expulsion, and he will never have a chance to complete his schooling. She begs us not to say anything, however inadequate the care is at Saint Angela it’s all there is for him, and he needs to keep his place there.  

 

For our part I pledge as much support as we can give both practically and emotionally. I add him to my wheelchair list when I go South Africa next week. Once he has a wheelchair we can bring it back with him from Saint Angela during the holidays so he can use it at home. Perhaps we can improve the path to the toilet to make it more accessible. He has a check-up due in July and I want to go with him to see about the possibility of him getting steroids to maintain his strength to complete his schooling. He likes school, his favourite subject is maths, and he has one more year to complete and graduate. It would be a goal for him and give him purpose, but without more medical help I’m not sure if he will make it. The alternative of giving up school and spending the rest of his time in this one room hut would be too crushing for him and the family. I hope somehow, we can help to keep this small glimmer of hope alive for him and offer him a realistic prospect for his immediate future to focus on. Beyond this possible dream the bridges which lie ahead will have to be crossed when he reaches them.

 

The mother escorts us back to the car, she has stopped crying and seems a little brighter, maybe because someone has taken the time to listen to her troubles and maybe because we have promised some practical support. We wave goodbye and drive away. Thato shakes her head, “Eish, this job!” she says and doesn’t need to add anymore, we are both totally spent. 

 

On Easter Monday I go on another home visit to a boy residing at Saint Angela during term time, but mum has pick him up over the Easter weekend to stay with his grandma and uncle, who live in the Maseru district. I have assessed this smart 10-year-old boy at the primary school and diagnosed him with spastic cerebral palsy affecting his lower limbs. During the physiotherapy sessions we run at the primary school he has been an enthusiastic participate and I wanted to meet his parents to speak to them about how they could help him with his physiotherapy during the holidays. 

 

I arrive with Ntseliseng, after explaining to the family who I am and about the outreach program. I ask to see his Bukana and happily, they have it.  I flip through the pages which detail a premature birth, admitted to hospital with respiratory distress, vomiting and seizures. After assistance with breathing, infusions, and medicine to control the seizures he was discharged but at three years was still unable to walk. Sent to physiotherapy there was no progress and eventually mum was able to obtain a wheelchair for him through some organisation, but I’m not clear who. This wheelchair is now far too small for him and broken. 

There is nothing from the medical history in the Bukana to suggest he has anything other than the cerebral palsy I have already diagnosed.  There is also a physiotherapy entry in 2014 which notes in small writing, “paraparesis CP”. 

 

“So, you know your son has cerebral palsy?” I ask the mother. Ntseliseng does not need to translate as the mother speaks good English. The mother looks puzzled and says “No”, she didn’t know. I go onto explain about the causes and nature of cerebral palsy and demonstrate the stretches with the boy which will help prevent contractures of his legs and the exercises which will keep him strong for independent wheelchair transfers. The mother helps with the stretches when I invite her but looks shocked and upset. Eventually she asks to speak to me outside, she has tears in her eyes. “You are saying he will never be able to walk?” 

 

I take a deep breath, “Yes, I’m really sorry he will not be able to walk.” 

“And there is no point in me taking him to South Africa for an operation to help him to walk?

No, I’m sorry there is not an operation that can help him to walk” I say sadly. 

“And we should concentrate on these exercises and try and get him a wheelchair that fits him?” She asks with resignation. 

“Yes, I think that is the best way forward” I say quietly. 

 

The small entry in the Bukana was obviously never explained to her and I have now extinguished the hope she had that her son might walk one day. I have found that even when children do have a diagnosis from a professional health practitioner in Lesotho it is not explained in a way parents can understand or empowers them to prepare for the future. I try to soften the blow by urging her to focus on her sons schooling and developing the bright intelligence he obviously has. She goes on to tell me of her shock when she picked him up from Saint Angela this time, dirty, uncared for, itching with a rash, his wheelchair broken. She can help with his exercises at home but who will help him at Saint Angela?

 

I compound her misery further by explaining the physiotherapy room has been shut at Saint Angela for over a year and I can only see her son once a week at school. That Saint Angela is chronically understaffed and overcrowded and that the itchy rash her son has is scabies, a contagious mite passed on through close contact. We noticed several of the children had the itchy raised lumps when we saw them at school, I took pictures and sent them to the paediatrician I use to worked with back in Powys. She diagnosed scabies and sent details of the necessary treatment and cream needed to kill the mites and eggs. I explain this to mum, who looks horrified and then it dawns on her. “But if I get the cream and treat him then he will just catch it again when he gets back to Saint Angela?”

 

“Yes, all the children need to be treated to eliminate it” I concur. We agree that there is little chance of that happening and since her son is presently sleeping three in a bed she may as well leave it until he comes home for the long winter break. She asks me if I know of anywhere else she can send her son apart from Saint Angela, but I don’t know anywhere. Poor parents are in between a rock and a hard place when it comes to getting quality residential care which will allow their children to go to school in Lesotho. I add the boy to my wheelchair list for when I go to South Africa, write down the exercises for her that her son needs to do, the cream she needs to get for scabies and my What’s App number. She will start to look for somewhere else for him to have an opportunity to develop the sharp mind he undoubtedly has, but it’s a tall order.  

 

Diagnostic dilemmas continue to be a significant part of the challenge of working in Lesotho for the Physiotherapy and Outreach Program. Identifying conditions without medical background information is difficult enough, but it’s only the beginning of tackling the complex issues that surround the barren landscape of disability health care here. Trying to find a positive way to use a diagnosis which will benefit children and their families without them losing all hope is testing me to the maximum. I wish that I could offer the two boys I have seen over Easter more, but all I can do is use what we have to do the best I can. 

 

Blog 47: Repair Shops and Workshops

I go to Bloemfontein with the occupational therapist on the hunt for wheelchairs, he has stuff to pick up too so is happy to drive my car and be my guide. After a tedious interval at the border doing lateral flow tests, it’s a smooth 130 km to the city and a rather hot and not very successful foray for wheelchairs. There are plenty of chairs but only in standard adult sizes, so I only get one for the biggest boy. I also manage to get crutches, foam for seating and yoga mats for padding, so the journey is not wasted. I use donations I have been given from folks back home to buy the equipment and I have more money to make further purchases. Next time I will ensure I order wheelchairs of the correct size from the shop so they are ready to be picked up when I visit Bloemfontein. 

 

When I give the boy his new wheelchair, see his smile and the way he spins the chair on the spot the day trip is worth it, especially to alleviate the nerve damage down his arms which the old chair was causing him. Although the old chair is shocking a couple of enthusiastic teachers reckon they can bolt it back together and cut down the sides to stop it impinging the nerves under the next users arm pits. They manage to achieve this, then it’s up to me to pad it using contact adhesive and yoga mats and cut the foam down to size for cushions and a back rest. The jobs a good un, ignoring the bolts and screws sticking out at the back but these are mere aesthetics. 

 

Pleased with how the repaired chair has come together I have just the boy in mind for it who has a terrible scoliosis and is currently using a wheelchair with just a bit of plastic canvas for a seat and no back support or footplates. Unsurprisingly he has terrible back pain. Passing by Saint Angela on Saturday morning I spot him and tell him I’ll bring the wheelchair over, within a flash I am surrounded by half a dozen children asking about other possible repairs to their equipment and I come back with tools, contact glue and yoga mats. 

 

I knock on Sister’s door and tell her I am here to do some repairs. Standing on her doorstop with a rucksack full of repair bits it’s a fait accompli so she says okay! Outside in the yard it’s a bit like a TV program called The Repair Shop where people bring broken items of sentimental value to be fix by a team of experts. Actually, it’s not like the Repair Shop in that I’m not an expert, barely have any tools and the items are vital for these kids’ lives and independence rather than just of sentimental value. The only similarity is most items are broken and look worn out beyond repair. 

 

The first fix is a simple one, just replacing a crutch tip. Next, I provide a boy with shocking lower limb contractures a knee cushion, purchased in Bloemfontein with him in mind. His knees have become so locked together I’m not sure how he manages to go to the toilet or attends to any personnel hygiene. The cushion provides a soft wedge between his knees to hopefully keep things deteriorating further but his broken-down wheelchair is adding to his problems, and I must replace it as soon as I can find something more suitable.

 

Next, I pad the handles of a girl’s crutches with strips of yoga mats and contact glue. Her hands are being wrecked by the hard plastic handles of her crutches. After that I attend to the boy who is getting the recycled wheelchair. The seat and cushions are a comfortable fit but there’s something wrong with a front wheel and it’s very hard to self-propel. The boy insists we take it off, and feeling I might regret this, I oblige to see the last bit of thread holding the internal rod disintegrate in my hands. Now having only three wheels left we are joined by a couple of other children who also only have three wheels left on their wagons, so three wheelchairs with only 9 wheels between them, great!!

 

I call for help. The care worker has a bag of bits and a screwdriver. Using these additions, I take the wheel off the boy’s old chair and use any bits I can find that are less broken, I replace the shredded internal workings of the wheel from the recycled chair. Somehow it works and goes around, for how long I don’t know. 

 

“Mme Jan, I want to thank you” the boy says softly as he has watched me battling with rusty bits of metal for the last hour. He’s a teenager still at the primary school, desperate for an opportunity to read and write. His body is more battered than his old wheelchair and he is in constant pain, yet still has a smile on his face. He’s worth any help I can give him. The care worker has some oil to smooth the wheels workings and also thinks he can sort the other two cheap Chinese chairs whose wheels have fallen off. That’s a relief as without them the kids can’t get to school, but as the ground is so rutted its likely they will soon all be in bits again.

 

The environment these kids must battle with every day is ridiculous. Back at the primary school the principle shows me the disability toilets that have been built by the ministry of education. They’ve never been used as there is no access to them. The ministry said it only had money for the toilets, not paths so the toilets remain monuments to inappropriate environment they are surrounded by and the lack of thought and care about the needs of children with disabilities. The lack of planning and knowledge goes all the way to the top in the Lesotho government and to try and raise of these issues is one of the reasons for the workshop we hold with stakeholders on National Cerebral Palsy awareness day on March 25th. 

 

The build up to this day has gone on for weeks. There are certain ways of doing things in Lesotho, etiquette of the ways invitations must be sent and who must be invited. I have no idea about how to set about this, but fortunately Thato does and launches an administration marathon. There is also food and caterers to organise, as a workshop without lunch would be a disaster, sweets, things to put sweets in, notepads, pens, flip charts, the list goes on …

 

Adding to complications in the last few days we finally get an invitation from the department of trade for an interview to register as a non-profit company. Without this registration its hard to work with other organisations and government agencies. We pick up a letter from the lawyer and zoom down to department of trade and wait for an hour to be seen. It doesn’t go well. The interviewers are not impressed that we don’t have an office and even less impressed that we don’t know about article 15 of the non-profit organisation registration act. I try to move my eyeballs to look at Thato, without turning my head, to see if she has any idea how to get out of this dilemma. 

 

Thato apologies and says we will research this area a little more and rewrite our application and hand deliver it tomorrow. We add this to our list of things to do, including making a short film of a seven-year-old boy with cerebral palsy who is one of the few youngsters with CP in Lesotho with a chance to go to school. The registration letter is delivered for the second time, and the film about the boy made, despite a near catastrophe when I fall over an unnoticed potty in the corner of the classroom and nearly bring down the flimsy barrier separating his class from the adjoining class. I recover my balance in time to avoid squashing about 30 children and adding them to my physiotherapy list.    

 

The day before the workshop we go to the venue, which is at the Lesotho National Federation of Organisation of the disabled LNFOD. I’m not impressed. I thought they had a proper conference room big enough to comfortably fit 25/30 delegates, not a small room filled with boxes and a filing cabinet. It’s too late to change anything so we remove the boxes, which immediately improves things, but find they only have 15 chairs and a projector which won’t link to our laptop.  

 

We must go into town to find chairs, bottles of water and all the other last minutes things we need. The driving is a nightmare for me, even though I am now a veteran of going through red lights and tussling with local taxis drivers at free for all junctions. We find some chairs at last and all the other stuff we need but no projector. We return to LNFOD with the chairs but they are now holding a meeting in the room so we can’t go in, set up the room or test the projector again. We leave and go to Selemela, an organisation we are linked with who are blessed with a large office space, two projectors, numerous laptops, dozens of spare chairs and only one person using entire building when we enter mid-afternoon. 

 

Thato and Ntseliseng are obsessed by the chairs, which are far nicer than the ones we have hired.  I am obsessed by the two projectors, as my presentation and film need one to play. After an hour, trying both projectors and different combinations of laptops and flash sticks and the help of the guy at Selemela, nothing works. It’s gone 5 o’clock getting dark and we leave with both projectors, a laptop and a load of stress. We pick up another laptop from Ntseliseng’s friend and return to the guest house to try again. Thato’s husband, Justice, adds his projector to our stash and finally after 4 projectors, several laptops and flash sticks, we get a combination that works. 

 

Exhausted we get a few hours sleep before being up with the lark to print off programs and set the venue up before registration at 8.30am. I find that Thato and Ntseliseng have got a local driver to bring the nice chairs from Selemela and we are now blessed with more chairs that we need. It’s a frantic rush to set up everything up on time but as usual in Lesotho everyone arrives late so we need not have worried. Most people are not more than an hour late, so it’s a positive triumph and one teacher even arrives early. When I asked Thato who she is, Thato tells me she was a teacher who arrived half a day late for a training event I ran a couple of years back and I refused her admission. Obviously, this time around she was a lot keener to attend!

 

The event goes well, with quite a lot of emotion from a couple of the mothers of children with cerebral palsy who give talks, and some useful feedback from representatives of special education. Apart from my talk on understanding the medical background to cerebral palsy, most of the conference was held in Sesotho, so I don’t know the specifics of what people were saying, but for such an emotive day it was best that people expressed themselves in their first language. In terms of raising awareness of what cerebral palsy is and the problems that children and their families in Lesotho face trying to access health facilities and education the workshop was a success. Thato did a great job getting coverage from the press and TV and much to my surprise I appear on Lesotho National TV saying something reasonably coherent in terms of how the physiotherapy outreach program empowers children and parents. A practical outcome was also achieved with a resolution by stakeholders at the end of the day to work more closely together and try to resolve issues like environmental access where combined efforts are likely to be more effective. A good result all around worth all the effort.  

 

Thato, Ntseliseng and I are both physically and mentally exhausted by the time its all over. We still have to clear up and take the hired chairs back, but we are happy that everything came together in the end. Everyone turned up, eventually, and took part to make it a positive, memorable, and useful experience with the media capturing it to give national coverage. The director of Mo Rate told me it was the “happiest day of her life”. I think for me it can be summed up by one word, “relief”. I find it much more enjoyable working face to face with children and families and would rather run a repair shop than a workshop any day. Sometimes, though, you need to go beyond the local community to be an advocate and hope that such events will add a little bit more awareness at national level and policies and attitudes will eventually become more enlightened. Now it’s its back to grassroots level for April and dramas of a different kind.