Aid for pa­tients trapped in body

The Star Early Edition - - NEWS - AMANDA CASHMORE

MO­TOR neu­rone dis­ease can ren­der a per­son paral­ysed – locked in a body where they can feel every itch but can­not scratch.

The speed of the con­di­tion tak­ing hold causes costs to rocket, es­pe­cially when pa­tients be­come un­able to work, leav­ing fam­i­lies to ei­ther spend vast quan­ti­ties of money or sim­ply go with­out.

Zeb Nas­sar, 48, was di­ag­nosed with mo­tor neu­rone dis­ease in 2016. Her fi­nan­cial strug­gle with the dis­ease be­gan when she fell down the stairs on her way out of her flat in Lon­don, and was un­able to con­vince the coun­cil to pro­vide her with a stair­lift. She was un­able to leave her flat for eight weeks, for fear of fall­ing.

Nas­sar be­gan to suf­fer from de­pres­sion. “I sat on this chair all day long. I just lost in­ter­est.

“Even­tu­ally St John Am­bu­lance would bring me down from this prop­erty for £348 (R6 000). I went down 20 steps on my bum.”

Is­sues with di­ag­nos­ing MND are com­mon. Ammar Al-Cha­l­abi, a pro­fes­sor of neu­rol­ogy at King’s Col­lege Lon­don, ex­plains the dif­fi­cul­ties that doc­tors have when faced with the symp­toms.

“Mo­tor neu­rone dis­ease takes about a year to be di­ag­nosed on av­er­age.

“Al­though MND will kill one in every 300 peo­ple, the av­er­age GP sees just one per­son with it in their work­ing life­time, and so they ex­clude other sim­i­lar con­di­tions first. There is no di­ag­nos­tic test, so the doc­tor has to go through a process of elim­i­na­tion, which takes time. Be­cause it is a dev­as­tat­ing di­ag­no­sis to re­ceive, doc­tors will wait un­til they are very cer­tain be­fore the pos­si­bil­ity is men­tioned.”

Ac­cord­ing to re­search pub­lished by think-tank Demos – com­mis­sioned by the Mo­tor Neu­rone Dis­ease As­so­ci­a­tion – the av­er­age pa­tient and their fam­ily spend al­most £12 000 (R204 000) a year on their con­di­tion – one-off pur­chases (home adap­ta­tions), reg­u­lar ex­penses (such as care, or ad­di­tional help around the home) and en­hanced costs (such as in­creased en­ergy bills or travel in­sur­ance).

Susie Rabin, head of pol­icy and cam­paigns at the as­so­ci­a­tion, said the huge bills can cause huge amounts of stress for fam­i­lies who are al­ready under fi­nan­cial strain.

Su­san Gra­ham started her non-profit or­gan­i­sa­tion Jas­pal’s Voice in me­mory of her sis­ter, who died af­ter a 10-year bat­tle with the dis­ease. Her goal is to tackle is­sues with com­mu­ni­ca­tion de­vices for pa­tients who can­not speak any­more.

“The National Health Ser­vice pro­vides ex­pen­sive equip­ment but some pa­tients pass away be­fore be­ing sup­plied with any.”

Af­ter watch­ing Jas­pal lose her voice only a year af­ter di­ag­no­sis, Gra­ham was struck by the dev­as­tat­ing con­se­quences for some­one so so­cia­ble. Even­tu­ally, Jas­pal could com­mu­ni­cate only by us­ing a large key pad, where she would use pre­dic­tive text to com­mu­ni­cate.

She sent a sim­ple text read­ing “good­bye” hours be­fore she died. Jas­pal’s use of pre­dic­tive text in­spired Gra­ham to cre­ate an in­ex­pen­sive app to suit other pa­tients with MND needs.

MediVoice is an app that has a large nu­meric key­pad, which al­lows for easy pre­dic­tive tex­ting for those with limited hand move­ment. It is de­signed for ease and ef­fi­ciency, but is also vi­tal when a pa­tient can’t speak.

June is Mo­tor Neu­rone Dis­ease Aware­ness Month. – The In­de­pen­dent

‘I sat on this chair all day long. I just lost in­ter­est’

PIC­TURE: TRACEY ADAMS

RUGBY LEG­END: Joost van der Westhuizen died of MND.

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