Meet Shirley Cooke, our GBS woman of wisdom and warmth. Her GBS story, endured with her loving husband Ed, will touch you with a sense of strength, dignity and gratitude.
What is your role on the Committee and what does it entail?
I am a General Committee Member. I attend the meetings and help the team with decisions and provide input to general matters. I am one of the founding Committee, along with Mary, so we go back a long way together.
Can you share your experience with GBS or CIDP?
My story of GBS goes back quite a long time. In March, 1964 I was a very healthy, happy & active wife and mother of a daughter, 4 years and a son, 2, awaiting the arrival of our third child. In the last month of pregnancy, I contracted a respiratory infection and had a very sore throat and cold. Then, I was diagnosed with Bell’s Palsy, which is a paralysis to one side of the face where the eyelid and the corner of the mouth drops . For this I received physiotherapy and recall having a type of sticking plaster to hold my mouth up extending to the eye.. Our second daughter was born healthy on the 3lst March and immediately my face returned to normal. Miraculous! After being home for a few weeks, I felt unwell and was experiencing stabbing pains in my left hip and legs, abnormal sensations, tingling and appeared to be losing muscle power and general weakness prevailed. I was hospitalised at St. Vincent’s and a lumbar puncture revealed I had a Neurological condition called Guillain-Barré Syndrome -a rare auto-immune illness that affects the peripheral nerves of the body – also known as Landry’s Ascending Paralysis. My legs were first to be paralysed, then the arms and things got really serious when my breathing muscles were affected. This necessitated a tracheostomy and I was placed on a ventilator and remained in the Intensive Care Unit for 4 weeks. I was totally dependent on the wonderful nursing staff and everything had to be done for me. There was NO treatment in those days except for a Physiotherapist who came in and moved my arms & legs.
What was the toughest challenge you faced during your recovery and how did you overcome it?
Complications occurred with a lung infection and my husband was called in when I was not expected to live. Thankfully, I did!. After a month, I returned to the Ward and intensive physio began. I had to learn to move and walk again .A board was placed at the foot of my bed to hold my feet up and I remember severe pain. I had been in hospital from April until December and was sent to Babworth House at Darling Point, which was then a Rehabilitation Centre. Although I had seen my 2 older children, I did not see our new baby until she was 10 months old. She spent her early life in Karitane, Woollahra. My family of course visited her regularly so I was kept up to date with her progress. And how well I remember a male Asian nurse from St.Vincent’s, who very kindly visited her too and gave me glowing progress reports.
Has your GBS/CIDP journey changed your life in any way?
After leaving hospital, many changes had to be made at home including a live-in housekeeper for some time, but then in 1966 I was delighted to get my driving licence and this opened up doors for me. I guess I spent nearly 2 years recovering. have a couple of reminders of that dreadful time – I wear calipers on my legs to assist with foot-drop and have muscle waste in my hands, but life, being so precious and our greatest gift, has been good to me and this horrendous experience has made me realise never to take things for granted and one’s values are certainly changed. We have been blessed with 7 grandchildren, one of whom has special needs. I have been challenged over the years with health problems, unrelated to G.B.S., but these have been overcome. Ed and I have been fortunate to have traveled overseas and here in Australia. Our third daughter grew up to be an avid traveler, spending 10 years touring Africa and ended up running a wildlife camp in Zambia where she had a baby in a very tiny Mission Hospital – the first white baby to be born there in many years, so she has kept her parents’ adrenalin pumping well. She, her English husband and 10 year old daughter now reside in England. I have found hydrotherapy to be very beneficial and have done Aqua fitness classes for many years. Another form of exercise I do is cycling on an exercise bike daily. Finally, should you ever be unfortunate enough to be stricken with this devastating G.B.S, might I suggest you contact our wonderful G.B.S. Support Group which could be of great help. And, most importantly, now there IS treatment available, which would shorten the length of this disabling syndrome.
What inspires you each day?
Together with faith, hope and determination and a loving, supportive family, there is light at the end of the tunnel.