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 Post subject: My tryst with GBS
PostPosted: 06 Dec 2013 19:51 
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Joined: 30 Sep 2013 19:35
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It was Calcutta in winter at four degrees celsius

We have just returned from a hectic holiday at Andaman inthe pleasant scenic beauty and friendly climate.I need to buy some reliable woolen clothing and so went for shopping that saturday evening.when I returned I felt my toes felt numb.what a chill weather I cursede and went to bed. The morning finger tips also were tingling. I attributed again to the cold. Some doctors from a neighbouring hospital came to invite me to the inaguration of their medical conference. As I walked from the bedroom to the drawing to receive them my knees buckled. Some how managed and chatted with them over cup of tea;hand was feeling funny. During lunch I couln't take my hand easily to my mouth-some weakness. Now I know the diagnosis but I discussed with the physician who came home to see me all possible differential diagnosis less severe(denial) though both of us knew the fact.A few hours later the consultant Neurologist advised immediate admission to hospital and made categorial diagnosis and said 'facts have to be faced' I am struck by 'gullain Barre syndrome'. I knew life is not going to be same in the days to come.

1995 JANUARY-Monday
I was entering the I.C.U in a stretcher where I used to walk into the place with many doctors on tow couple of days earlier.

It was a strange experience. all along entering vertcally into the place & now a royal entry lying down on a well cushioned couch.everymovement was painful inspite of great care & skill in tansporting my limpless body on to the bed.my foremost anxiety was how to communicate when my voice goes off if I were to go in for ventilatory support.I was so powerless,by then, to make flicker of movement with any part of my body.This anxiety made me hyperventilate&maintain my vital capacity.But this was mistaken by doctors as paradoxical respiration. They were gettig ready for the ventilator.


Dark days
.
I spent 15 days of ordeal both physical & psychological in spite of the best treatment given with care&affection.I lost my muscle power from neck to toe to zero. some movements possible only in the face that too with all different grades of palsy causing grotesque appearance on trying to speak
andspeech unintelligible.The greatest worry was how to communicate if were to be put on ventilater.Cant even make gestures.so I told my wife if I open the eye & stare- I am calling.number of blinkings were given meanings like
one-thirsty,two pain,three-call doctor etc. Fortunately inspite of the severe attack(axon degeneration,they told me later)breathing got spared.the most annoying symptom was pain-pulling pain,dull aching pain,shearing pain &so on at different places of my anatomy;especially around the joints& the
extensor muscle areas.Physicians debated for treatment plasmapheresis vs Immunoglobulins and decided on the latter.After the course I was shifted to perambur rly hosp at chennai for social&logistic reasons.The medicines,air fare& other connected expenses were borne by the railways.


Air travel on a strecher
My air travel was an experience. I was taken in a stretcher and placed on the floor (after removing a row of three seats in the front). People who pass by put on a sympathetic look.Lying down I could see only legs and nothing else;shoes with socks,without socks,sandals,slippers and a couple of bare feet! when we landed, Chennai was wet with heavy rain.when you are sick the self pity overtakes;I imagined the whole place crying over my misfortune. But I should say that a couple of my doctor friends from Perambur hosp,hospitalambulance staff,number of my relatives were there to receive me;some of them brokedown too, seeing my pathetic condition-toneless body,bilateral facial palsy giving a grotesque appearance;my talk was so much unintelligible that when I tried to thank them for their concern, no one could make out what I was trying to convey which only made them more sympathetic.I reached the hospital horizontally.My days in Cal was more of anxiety about survival.Now I knew that stage has passed but anticipation of the gloom of my future.will I be able to walk or wheel-chair bound,still worse become horizontal hariharan.Pain-so annoying,how to describe except to say that it is PAINFUL.I knew the ordeal has just begun.some of the handicaps will remain probably I should learn to live with them.Life is not going to be the same anymore.
Today when I think that I was lying on my back not one day or two days more than three months-100 days and unable to move even the finger tip and needed help for survival is mind boggling. My incapacity caused physical and psychological inconvenience to many, esp my wife whose black hair started greying.During this period I learned all about GBS, muscle actions by discuing with the medicos.
Good hearted relatives and friends sent us food regularly and looked after our other needs.when you are sick you want to see people which is a common psychological need;I had regular visitors.This day of the wk this time so and so will come-to that extant I could say.otherwise I would have been depressed by boredom.During this period some of the


The endurance
After the acute phase,that means the autonomic system got stabilised and any recurrence avoided shifted to the special ward.Main stay of treatment was to give physiotherapy. three sessions a day.to start with only passive movements.then active assisted;It took two months to make any attempt to active movements.sitting was a problem;turning was a problem;grip was a problem.name any movement there was problem;added to that was pain.explanation-weak muscle unable to cover and cushion the joints and bones.I learnt to hold a pencil and could make only circles.all my transactions done thru LTI only.I never imagined I would be reduced to a
'kainattu' one day!bank,rly admn,IT dept etc all have my thumb impression during that period!Very very slowly some movements appeared probably after three months.Therapist will make me stand - ofcourse he will hold me tight from behind-feet will appear to be nailed to the floor;knees will buckle;back will be wobbling-in short it was like making a 6month old child stand.By constant practice ,thanks to that excellent physiotherapist, progress was seen but very slow.A few steps holding a walker which appeared to me a big achievement. At this stage I decided to attend my niece's wedding.with all medical help with walker I went in a car, walked to the place from entrance and sat down.The whole process took 1/2 hour which a normal person would do in 5 minutes.This exercise was very painful and physically devastating but gave me lot of confidence.That day I walked with my will power than with any muscle power. Sometime later another nephew's marriage I attended -this time I was promoted from walker to walking stick!Eight months later I went back to Cal with walking stick on one side and a man to hold me on the other side.cannot get up from sqatting position
pain continued;with an added problem of muscle cramps.With all the handicaps I joined duty and went thru the stress and strain of the job as I cannot escape on the pretext of my disability.The Neurologist at madras said that he knew of two of his patients recovered and now globe trotting.
But I never anticipated at that time that I would be able to walk, leave alone travel abroad with this state of physical condition .Whenever people ask about my condition I tell them that 'I am independent but not normal'. this statement is absolutely true because I can look after myself,I can drive the car,carry a small bag, eat like others and can write. But my foot drop ,facial palsy and the stoop are obvious;I cannot walk long distance;cannot run to avoid an approaching danger as my muscle power in lower limbs are only Grade 3, where it should be 5;my small muscles of the hands are wasted so I need a spoon to eat our traditional meal.with all these you can be happy
if you have caring and loving family.I gave them love and affection, now they are giving them back to me with interest!


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 Post subject: Re: My tryst with GBS
PostPosted: 07 Dec 2013 08:48 
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Joined: 30 Sep 2013 19:35
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All of you know very well about GBS. My idea of writing this is to express the experience from patients point of view.(I was affected by thedisease in 1995)

I have highlighted the onset(how the subject feels the various symptoms),the parasthesia which remains as a residue, how quickly (the disease) disables the person, the pain which is not usually mentioned, and above all the family support which is a boon in recovery of the (any) disease. Though it is taught as GBS will fully recover, small percentage is fatal; most of the patients recover with atleast 20% of permanent disability.

What I have written may not be very technical and academic but I wanted to give various aspects of the disease from a subjective angle. Excuse me if it is not objective and clinical.


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 Post subject: Re: My tryst with GBS
PostPosted: 08 Dec 2013 23:51 
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Joined: 15 Mar 2013 08:12
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Hi Hari,

We are glad and fortunate to have you around and narrate your experience. Is there a vaccination for this incredibly incapacitating neurologic malady ? What is the fatality rate? I undertand that immediate supportive care with ventilatory support is critical, just like acute coronary situations.

_________________
Raghuthaman


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 Post subject: Re: My tryst with GBS
PostPosted: 11 Dec 2013 02:38 
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Dear Ragu,

Fatal outcome is more among elderly people and those who end up with ventilatory support. If I remember correctly fatality is around 5to10%.

what would interest you is that 2percent caused by C.Duodenale.

Hari.


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 Post subject: Re: My tryst with GBS
PostPosted: 11 Dec 2013 14:00 
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Joined: 26 Feb 2013 10:59
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Hari,

Your story about what you went through and your feelings as a patient diagnosed with GBS should have a terrific impact and serve as a teaching aid for any young doctor who is treating a patient with that condition. As doctors we do not always realise the emotional impact that a serious disease (and its outcome) will have on a patient when they are informed about it. The doctor should spend more time with the patient to explain the condition and also offer solutions for all the associated problems that the patient may think he or she will face. We should think about continuous emotional support in addition to the actual treatment planned when dealing with a serious disease.


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