I went down with GBS in July 1996 my recovery is not the best, I have to wear splints on both legs, I have dropped feet and my balance is not good, I have to use a ‘walker’ all the time. I can’t do anything standing up, unless I am leaning up against a wall, I have to sit down when I want to do anything like taking food out of the fridge, and so on.
My legs are so sensitive to touch from the knees to my feet, I get a lot of nerve pains in them. So I take tramadol, some times I take 2 panamax with a tramadol if the pain is bad. I do this no more than 3 times a day. But my hands are the most upsetting, when I try to pick up any thing from the floor, or try to get money our of my purse, I can’t because my thumb goes backward instead of meeting my forefingers, they also bend at the knuckle joints.
So I have to do things the best way I can, the palms of my hands, and the soles of my feet are very slippery caused by lack of muscle usage, so my recovery is not the best, although I am better than when I first came home from hospital, when I first got GBS.
I couldn’t even sit up in bed or feed myself, I was really paralysed.
In the last 10 years I have had a lot of set backs, I have been in hospital 3 times with severe attacks of Diverticulitis the 3rd time I was operated on and I was left with a bag on my side for 3 months which was not too pleasant.
When I first got GBS I was sent of Prince Alfred Hospital for 6 treatments of Plasmapheresis. I should have been there only 6 days, but I was there for 2 months, they found I had a gall bladder which had to be taken out, then I got clots on the lungs, I had a relapse and I was sent to ICU. When I was discharged I was sent to Woy Woy Rehab, I was there for 6 months.
When I finally got home I still couldn’t dress myself, or feed myself, or do the personal things one does, my husband had to do these things [for me]. I started to improve after about 3 years, I have had leg ulcers on and off. In August 2008 I had a fall and broke my ankle, I had to be operated on again, and had a plate and screws put in them. In December 2008, my husband died he was suffering from Parkinson’s Disease for 5 years before he died, of a strangled hernia. I am living on my own, with some help I can manage.
I have learnt one thing in life you have [to] help yourself, if I can’t help myself I would not like to live, [I] don’t think about the past, I don’t worry about the future. I just try to get on the best way I can.
I was hoping stem cells might have helped, but I have given up on that, because I was told, they don’t know what part of the body to treat. I don’t think that cure will be around in my day.
I am 80 years old and I don’t think I will improve any more, because I have had many set-backs; and I have had it too long.
It is good I don’t have any trouble with blood pressure, and I don’t have heart trouble.
I try to exercise as much as I can and take vitamins. I have not given up, and I bought myself an electric scooter so I can get about I hate writing letters, I make too many mistakes , but you did ask for a feed back in the last Recovery...
Doreen Knowles - August 2010