My Experience with Guillain–Barré Syndrome

25th August 2006. Lillias Morgan.

For three weeks at home I suffered aches and pains in my arms, neck and legs. I was not sleeping at night, and in hindsight that should have been a sign to me that things were not good! Late one winter evening I was shutting the double doors in my bedroom and I fell over. Of course I thought I had just “tripped”. Hobbling with a very sore little toe I made it out to the lounge where I sat down on a chair. A few minutes later I wanted to get up, but needed the assistance of my husband as my legs did not have the strength for the push up. Consequently I fell too the floor again! I still did not realise I was in trouble until I fell over for a third time in an hour. It took a bit of persuading to get my husband to take me to the doctor as he was settling in for a night of rugby on TV. We drove to Gisborne and I was seen by the after hours duty doctor. She diagnosed Guillain–Barre and promptly read out the symptoms to me and told me that is she was correct I would be in hospital for an awful long time!

That night many tests were conducted and five hours later the doctor referred to me as a “diagnostic dilemma”. I had not been in hospital since the birth of my last son which was 32 years ago, so I settled in for a “couple of days of royal treatment” being waited on by hospital staff! It was three weeks later that a Neurologist diagnosed GBS. Gradually I lost all use of my legs and then very slowly my arms. I was totally dependent on others for feeding, dressing etc. At my worst I was paralised form the shoulders down! All the time I was in hospital I prayed that I would not have to have a tracheotomy and be in ICU as they had prepared me for this. So it was a matter of wait until the body was ready to heal itself. By late November my first sign of progress was a movement in my index finger. Ooh, I was so excited. Gradually the use of my arms and legs came back and the race was on to beat my new grandson Will to crawl. Yep, he beat me! But I did beat him to roll over!

With the help and support of friends I beat this damn illness. I have now experienced dependency of a paralised person, life in a wheelchair, assisted feeding and dressing, learning to crawl and walk again. I was a busy farmers wife with a passion for golf. After 147 days in hospital my life changed for ever. To get back to golf was my ultimate aim. At first I walked with the girls, then took one club, then progressed to playing 9 holes and now am delighted to say that I have conquered 18 holes. I was on a 16 handicap when GBS struck and now am on a 23, which I reckon is great. I was determined not to go in a motorised cart as I need to walk when I am 80. My ongoing problem is with my feet, but I can handle that. On the days I play golf my feet certainly remind me of my illness. My husband is delighted that I am back behind the lawnmower! I swim (40 lengths), aqua aerobics (once a week), pilates (weekly), golf (twice a week), play mercantile indoor and outdoor bowls, walk regularly and can’t stress enough how each one of these exercise programmes have helped me. My life is normal.

Lil Morgan

Update:

It is almost six years since my GBS experience. Life is almost as it was pre GBS. I still have a numb feeling down my shins and have trouble with my feet which is helped along by a lot of massage. I have to wear shoes that are literally tied to my feet as I dont have any grip in my toes. I have returned to the golf course and can manage to walk the 18 holes. I also swim and go to pilates classes once a week. Life is great!

Lil Morgan