Guillian-Barré – my experience
Neil Hickland, Carterton
I took early retirement at age 50 from post office.My wife Aurea and I have 4 surviving children (our oldest,a son) passed away at age 25 from Fredricks Ataxia and a heart defect.
We purchased a 50 acre block at Gladstone ,Wairarapa.We sold this after 8 years and bought a 33 acre block at Carterton Wairarapa, farming sheep and cattle,mostly trading,and breeding eye (heading) dogs for our own use,and selling surplus pups.This resulted in both of us giving up golf after many years!! Not because of work,but loss of interest in playing reguralily. I was employed for 3 years and 6 weeks shepherding on an hourly,and as required , arrangement until I was dealt this difficult hand to play!!! It all began -with diarrhoea on 19 07 00. On 25 07 lifted sheep,thought wool had fallen out (as happens with sheep stressed).Looked at hands,no wool,just “a funny feel in fingers”.finished worked afternoon,had dinner,awoke 5am “skitters’ gut pain,felt weak,difficult to get into truck,had neighbour(who is also good friend) come to work to assist with lambing beat.Couldn’t get on 4 wheeler,so rang boss, friend lifted me into truck,he drove me home . 26 07 Aurea took me to the Dr. By then couldn’t lift arms above shoulders.
His 1st questions were had I been drenching stock etc.? No. Take your jersey off. I B well cant. Hop on bed. Cant. Sit then,will do reflex tests,blood pressure ,check heart etc ,for stroke!! No reflex,not stroke.
Believe you have a rare disease,but nearly all recover almost fully,it`s called Guillain Barr`e.I will give you steroids to take for a week.You will have to be reviewed . When will I see you,next week? I think it may be sooner than that,I`ll give you a letter to the hospital,if you deteriorate go straight there. How will I know when that is?. You will know,you will have trouble with balance etc.
27 07 00 Thursday - slept well ,went to toilet,couldn’t lift off it!!! What the!! Aurea lifted me off,dressed,tried to prepare breakfast but couldn`t open kitchen cupboard!! felt weak. Aurea went to farm 2k away.When she got back after 1 hour, I had rung son-inlaw to take me to hospital,as couldn’t get off lounge settee. Arrived A&E.11am, Dr checked all over again,told me get off bed. I Said ‘cant’. Ok I`ll not let you fall. CLUNK,straight on floor and 98kg too heavy for him and Aurea to lift.He admitted me to medical ward .
Friday done lumber puncture,successful only after Registrar took over when 2 (nurses?) failed. Result was blood tainted,but Wellington prescribed Haemoglobin (I tkink) ,started 8pm,completed 2am Saturday!!!
Saturday,ambulance to Wellington,arrived 1pm,seen by neurolgist,done tests,most of which were -1 to -5, -5 being no reaction!! He told me near full recovery,would be weeks and months rather than days or weeks. On haemoglobin for mandatory 5 days, massive back aches,virtually paralysed from neck down,and constipated !!!!
On following Tuesday,had the electric shock test, Yeeeow!!!
Neuro believed had been afflicted longer than symptoms appeared !!
Wednesday returned to Masterton hospital by ambulance .Still constipated,in isolation ,as is everyone returning from Wellington hospital due to the ***** (resistant bug).Thursday,after 12 days of constipation,finally “Bingo”.Then began the introduction of physio.
The swimming pool was the best relief of paralysis,as I could walk alone holding the side rail!! They wheeled me to pool,put me on sliding hoist,lowered into pool,then return after excersing.As an aside we have since had a new hospital built,but horrors,no pool!!!Aurea used to come each day and would dry and dress me,return me to ward. She also went to physio daily,I think to encourage physio in saying “just 1 or 5 or 10 more.(I sometimes used to “refuse”I know they didn’t really understand how fatigued I got.(Heard that before eh ?) Early on ,after about 1 month,I could lift my glasses, tried to lift half kilo on pulley, but hands slipped off handle.We decided to tie them on,so bandaged them on!! At that time couldn’t raise arms to shoulders. Physio progressed till I could “shuffle” about 10 metres unaided if no obstruction on floor such as a mat or electrical cord ,because I couldn’t lift my feet off the ground.
On Friday 02 09,while being supported between paralel bars,I dropped and hit my head on floor,dazed and no feeling for about 2 minutes!! Doctor checked me out,said could go home for (2nd) weekend leave.
Woke 6am,turned my head sideways and white lights flashed through my eyes!!! Tried again,same.Called hospital,got ambulance,Dr said balance affected by “little ball-like things being dislodged from small hairs inside he ear canals.Said they would likely re-settle,no damage done. 15 09 head scan in Wellington (hospital but covering) and all ok.Occasionally get small flashes if I turn head suddenly,but not a problem.
Released from hospital 19 09, travelled weekdays to hospital for physio and shower. Able to walk up steps out of pool 29 11 and shuffle to shower.Marvellous!!!Pool therapy ceased 08 01 01.Occupation therapy had steps (75 mm high ) built for entry into house with hand rail. I could only use them by going sideways one foot at a time (lost sweat at that!!)Also installed wet floor shower large enough to take wheelchair and another person .(I was using wheelchair when released,then onto “walker”.I couldn’t get off a chair,so Aurea (or whoever) would lift me (Cuddly too)!! O.T. also provided raised toilet seat, shower stool,sock assist,and hand held “lifter” to pick up things on floor etc.
About 5 months to touch my thumb to my small finger,about same time to lift heel off bed. Drove truck at farm 26 Dec ,(reaction clutch too slow, brake to accelerator same.Car at farm 02 Jan 01,but not confident to go into town until about end January.It took about 6 months before I would drive any distance alone because of fatigue ,scared would drop off to sleep (which I did a couple of times,but Aurea was keeping me under close watch (And still does) I still have difficulty climbing over fences,stock yards etc, getting up off the ground, cant hold a golf club with enough grip to hit a ball any distance.Can’t do vacuuming,ironing,washing, (& never have ha ha) but can use a chainsaw,hammer shovel etc.Must be the thicker handle allows better grip.
My hands and feet seem to be my lasting outcome of this affliction. Aurea and I have made ourselves available as visitors to newly diagnosed patients in hospital (or anywhere else) and have had good press through the Wairarapa Times-Age.When first in Wellington Hosp,neuro surgeon informed us of GBS,we contacted Jenny,who got Peter Scott to contact us.He arranged to come over from Palmy.What an experience that was to us to see the outcome of a sufferer,as at that time I was home,but hardly able to walk.To Peter,thanks and will have contacted you before this appears (if it does) The Wairarapa has had earlier this year 3 confirmed and 1 suspected new cases.We are renowned over years for high incidence of GBS.Since the publicity recently,Wellington Regional Public Health,Lower Hutt,are researching the cause.Many believe the flu injection is responsible.Of the 6 people I have spoken with here,I am the only one who had the injection!!(one week prior) Aurea and have been having them for about 25 years.
Last year I had the injection Monday,was in hospital with abscessed pancreas Tuesday!!! The injection could not react that fast (confirmed by specialists!!)
Good luck, enjoy what you have while you can.