Nick Haslam / Expedition Doctor
On 13th October 2014, Iain Fryatt, a 27 year old man with Friedreich’s ataxia (FRDA), made the first successful ascent of Mt Kilimanjaro (5895m) in a Mountain Trike. During the ascent he was accompanied by his family and a team of over 20 guides and porters. Nick Haslam was the doctor on the mountain – he talks us through the monumental climb.
It’s 0230 in the morning on Monday 13 October 2014. The African sky is filled with stars and at 4700m the air is surprisingly still. All the same I don’t regret packing my down jacket – it must be several degrees below freezing. As with many a summit attempt there is an atmosphere of anxiety and excitement. To be honest I never thought we would make it this far. Every one of my journal entries has been touched with the dream of reaching the top but also heavily underlined with warnings to myself not to get swept away by such desires. After all this is no ordinary expedition.
“In order to attain the impossible, one must attempt the absurd.” – Miguel de Cervantes
The adventure had begun with an email in June 2014. Iain Fryatt, a 27 year old man with Friedreich’s Ataxia and his family were looking for a mountain medic to support them in their attempt to climb Kilimanjaro. The Ataxia Clinic at UCL had given them the go ahead, with the proviso that they be accompanied by a doctor on the mountain. Iain’s attempt would be in a specialised mountain wheelchair (the Mountain Trike) and supported by Team Kilimanjaro, an expedition company with previous experience of wheelchair ascents.
Correspondence with the family had convinced me that this was a group I could work with even if the challenge they had proposed was radical. They clearly all respected the risks and were prepared to call it off at any point if medical complications occurred. Iain’s pre-expedition screening at UCL had been thorough, including full neuro-and neuro-urological, cardiac and speech and language assessment. Most importantly Iain had had no previous cardiac history and an echocardiogram found no evidence of cardiomyopathy or pulmonary hypertension – conditions present in many with FRDA.
Having said this Iain’s neurological impairment was severe leaving him unable to sit or stand without support and ataxic in all four limbs. He also suffered from dysarthria and intermittent urinary retention. Whether Iain’s neurological function would deteriorate with altitude was unclear and literature searches for cases of FRDA at altitude drew a blank – this was an expedition into unchartered territory.
Unsurprisingly, the medical kit was larger than most. It included a urethral catheter and cardiac defibrillator, as the risk of cardiac arrhythmias in FRDA is theoretically higher than in the general population at altitude. To further mitigate risk we planned to ascend via the Rongai route over a period of 6-8 days and use prophylactic acetazolamide (250mg OD). During ascent, we recorded daily vital signs, the Scale for the Assessment and Rating of Ataxia (SARA) and Lake Louise Scores (LLS). Distinguishing between deterioration in neurological function due to hypoxia rather than High Altitude Cerebral Oedema was going to be difficult. The daily SARA score provided a subjective but nevertheless quantitative assessment of the severity of Iain’s ataxic symptoms. The assessment was also recorded on a camcorder to allow accurate day-to-day comparison of Iain’s neurological function.
Although medical preparation had been thorough there were still plenty of unknowns. For logistical reasons I had been unable to meet Iain and his family until the departure lounge at Heathrow and whilst I had had contact with UK representatives from Team Kilimanjaro our actual guides would remain a mystery until we boarded the minibus in Arusha. Furthermore, although Iain had been practicing with the Mountain Trike in the UK he still had very limited experience of using it on mountain trails and also had limited experience of the trials of camping. His supportive family was in a similar position. Such limited experience did provide one advantage though: to paraphrase Charles Kettering’s quote, they “all believed and acted as if it were impossible to fail”.
With so much to prepare, it was perhaps predictable that we were late setting out for our first day on the mountain. We were only about an hour in when darkness began to fall with all the rapidity of the tropics. Still, we were soon watching Iain, head torch on, rattling around in his Mountain Trike traversing rough and ready ground supported by 5-6 porters. Although progress was slow, Iain covered difficult terrain surprisingly quickly with the support of the porters. As we came across more rocky ground I was astonished to see the ease with which they would repeatedly lift the chair, Iain in situ, over prominent rocks and roots and continue on unfazed. At the time I still couldn’t fathom how a summit attempt would be possible. However, as such feats of physical strength and endurance became commonplace, my confidence would grow.
And it wasn’t just the porters who had significant physical challenges to contend with. The Mountain Trike was being put through its paces. Even with a bag full of spares I couldn’t believe it would be able to take such a battering. Its passenger certainly wouldn’t, so improvisations were quickly developed to protect Iain’s neck from whiplash like injury and further strapping was acquired to keep him more securely in the chair.
In all, my first day on the climb was full of disbelief and bewilderment. Only later would I hear that Joshua, our Chief Guide, had also been lying in his tent at the end of the night, wondering if tomorrow would be our last day on the mountain.
Onwards and upwards
“The first step is always the hardest” is perhaps not an adage that fits well with mountaineering. However, as the days went by I became ever more at ease with our motion over the terrain and was pleased to be able to help the porters move Iain over some of the more challenging sections of the route. At times though, it was easier to carry Iain and the wheelchair separately – each porter carrying Iain for a short stint before carefully transferring him onto another’s back. Such a technique proved invaluable on summit day.
Iain’s daily challenges were very different to those of the porters but by no means of lesser magnitude. The daily tasks of eating, dressing and toileting are all more laborious when camping on a mountainside and were far more so for Iain. As we all know, small details such as adequate clothing, hydration and nutrition are vital for comfort whilst trekking. Adjustments such as unzipping your jacket or putting your hands in your pockets can make all the difference.
I have no doubt that Iain spent more time than the rest of us in discomfort, but he grinned away all the same. Toileting was particularly challenging but Iain with the help of his father and two brothers dealt with it admirably, even at 4700m. These difficulties were no more apparent than on summit day when all these tasks had to be performed at 0200 in the morning navigating with nothing more than a head torch. Alongside this it was cold, Iain would be relatively inactive and he had poor peripheral circulation at the best of times. Specialised battery powered glove and sock warmers were the order of the day. After some difficulty fitting Iain’s feet into his extra warm boots (Iain suffers from Pes Cavus) we were off for the top. The day I thought would never come was at last upon us.
It was my eighth day alongside the porters and their ability to carry Iain at altitude was no less remarkable. Above 5000m, each leg could be no more than 10-20m. After a leg, Iain would be transferred carefully to another porter’s back. This laborious process started in the dark and went on into the light of the rising sun. Inevitably a glove or hat would fall off here and there and give everyone an impromptu break, including Iain who had been working hard clinging to the porters through his two very large mitts. In this way we made our ascent to Gilman’s point over steep, loose ground. I positioned myself on the downhill side of Iain for as much of the ascent as possible, as potential trauma began to trump my concerns over altitude illness.
Progress was good. Having left School Hut (4700m) at just before 0345 everyone reached Uhuru Peak (5895m) at 1046am. I felt very privileged to witness Iain and his father at the summit. Iain’s smile was a sign of a satisfaction that we rarely get to share with our patients. His dream had been achieved and I had been by his side all the way. After some much needed refreshment we descended from Gilman’s Point and discovered the full appeal of scree running with a wheelchair. It was an experience only mildly marred by a constant longing for a crash helmet to miraculously appear on Iain’s head.
A few days later, safely at the gates of Kilimanjaro National Park we boarded our bus back to Arusha and arrived at our hotel with P Squares’ Alingo blaring from the speakers. For the last hour of the journey, the porters had converted the bus into the best nightclub in town. As the gates opened, the security guard joined in with the party and spontaneously broke into dance.
Kilimanjaro ethics are a minefield. During the trip I was acutely aware that a Western, white traveller was being hauled up a mountain by a team of Tanzanians, there through their own financial necessity. Unlike Iain’s smile, I had been unsure that the porters’ smiles were those of genuine satisfaction. I had been even more uncertain that as they had hauled and carried Iain to his dream, they had felt the same warmth from their achievement as I had.
Being part of such genuine and enthusiastic celebrations put my fears to rest a little. From a subjective point of view, it had really felt like a team on the mountain. Indeed many heroes of this trip could easily be forgotten and that is why I include a photo of the team, as well as their names below, without whom the impossible would never have become possible.
Porter welfare on Kilimanjaro and the mountain ranges across the globe is a complex challenge. My impressions are only a snapshot of the current situation. Whilst progress has been made on going support guided by careful assessment is much needed. The International Porter Protection Group (IPPG) provides guidance on trekking ethics and gives a structure whereby to assess a trekking company’s porter welfare policy. Ensuring that a company adheres to these guidelines prior to travel is highly advisable as once on the mountain it can be very difficult to successfully intervene.
What is Friedreich’s Ataxia?
FRDA is an inherited neurodegenerative disease resulting from deficits in production and expression of Frataxin, a mitochondrial protein. The majority of FRDA patients carry an unstable GAA trinucleotide repeat in the Frataxin gene (FXN) located on chromosome region 9q13. The condition usually presents at puberty with early signs of ataxia progressing to significant neurological disability by the second decade of life. Importantly the disease also commonly results in cardiomyopathy and musculoskeletal deformities including Pes Cavus and Kyphoscoliosis. Although a number of therapies are undergoing clinical trials there is currently no known cure for the disease.
The Expedition Team: Assistant Kilimanjaro Guides: Apolinary Temu, Felix Mwekilema & Wadia Kapanya, Cook: David Lema, Senior Porters: Patrick Lyamdala, Joshua Akyoo, Jonathan Gunda, Tajiri Ngonde, Eliudy Zadock, Priscuis Shirima, Shedrack Olota, Toilet Porters: Omary Gembe & Japeth Willium, Crew: Amri Mndeme, Filbet Rhuhimbi, Julius Kasmir, Rogers Mshanga, Hassan Jumanne, Amani Edward, Francis Julius, Gene Focus, Emanuel Joseph, Status Santus, Vincent Valentini, Julius Pantaleo, Anthony Francis, Musa Juma, Ramadhani Habibu, Japhet Prochers and Juma Abdi.
With special thanks to our Lead Guide Joshua Rhuhimbi, Team Kilimanjaro, our sponsors Ataxia UK and British Exploring Society, and the pre-expedition UCLH team: Dr Paola Giunti, Dr Antonis Pantazis, Dr Jalesh Panicker and Prof Hugh Montgomery. Finally, I would also like to thank Iain, Graham, Karen, Craig, Callum and Billy for being such excellent company on the mountain.
You can help Iain’s fundraising efforts by donating to Ataxia UK.