What is your role on the Committee and what does it entail?
Deputy Chair. Representing the Chairman in the event he is away.
Can you briefly share your experience with GBS or CIDP?
After experiencing difficulty in moving around I was advised to go immediately to St Vincents by my GP as my legs and arms were progressively losing strength. Luckily, my son was able to, with difficuty, get me to the Emergency department. There I gradually lost all muscular ability and became completely immobile over a period of time. After a spinal tap, the Doctors diagnosed my condition as GBS. A bit daunting at first but after six months of intensive treatment in Hospital and Rehab I was eventually discharged, being able to stand up and walk very slowly.
What was the toughest challenge you faced during your recovery and how did you overcome it?
Controlling the intensive under-the-skin continuous scratching pain, like something was trying to get out, was difficult. This, together with the total lack of mobility were the greatest challenges. The medical, and nursing staff were simply superb in helping me with the pain and itch relief together with the physiotherapists and OT’s who kept my limbs moving.
Has your GBS/CIDP journey changed your life in any way?
Yes, everyday is new and interesting to me. ! have become more tolerant and easy going: somewhat less ambitious in acquiring material things. What inspires you each day? The fact that I survived and the support I received from family and friends I am able to face new challenges in a positive manner.
Do you have anything else you would like to share?
Belonging to the Society has helped me in my improvement and healing. I can discuss matters which fellow GBS members have experienced.