Every day was Sunday - Wendy Simons
Wendy Simons was diagnosed with normal pressure hydrocephalus in 2001. She suffered severe symptoms for several months before NPH was finally diagnosed and she was fitted with a shunt.
Wendy, from Burgh le Marsh, near Skegness, talked to Link about her experiences and how ASBAH has given some much-needed support.
1. What early symptoms did you experience?
The changes in my health were very gradual. The first symptom was bladder incontinence, then I began to lose my balance, and I'd fall over and be unable to get up.
But in the end the illness really took over and I could barely walk around the house. Then I suffered dementia, so nothing really mattered to me anyway. We can laugh about it now, but I was so ill that I thought every day was Sunday. It was very scary for my husband Bob.
My daughter was pregnant at the time. She later told me every time she used to visit me I told her, “you're putting on some weight, you need to go on a diet!”
2. At what stage did you see your GP?
I was seeing the GP right from the beginning in February, because of the bladder incontinence and the muscle weakness.
By May I was so ill I had to give up work, but the doctors still didn't know why.
I eventually used Bob's private health cover and things started moving when I saw a specialist and had an MRI scan. I was fitted with a shunt in August 2001.
3. Did you recover from the operation quite quickly?
After the first operation I felt as though I was 75% back to normal, although I had been warned that because I had been so ill, it could take a long time. Then five weeks later the symptoms started to get worse again because my shunt had blocked.
4. Did you receive any follow-up care from the hospital?
No. This is the one thing that really shook us. After the stitches were out there was no further contact or information. I felt so lonely and isolated. We weren't given any information and it wasn't until a few months later when I saw Normal Pressure Hydrocephalus on my medical notes that I found out what I'd had.
But then I thought I was cured, I didn't realise up to then that NPH is a lifelong condition. I assumed that the shunt was a temporary thing, and that it would be taken out at a later stage.
5. Have you experienced any subsequent problems?
Yes I do have problems. Its stupid, silly little things like discomfort when I'm travelling, and learning to drink more, especially during the summer.
But they are small problems that don't really matter. I can put up with them because I'm still here, which is what really matters. I've got Bob, I've got the girls, I've got my grandchildren - I'm still here with my family so I won't complain about these little niggles.
6. When did you get in touch with ASBAH?
Two years ago. I found ASBAH on the internet and gave them a call. Now I know that if I've got any problems I only have to phone my adviser, Linda, for help.
ASBAH has been a wonderful source of information and I feel I can ask my adviser the frightening questions that I can't ask anyone else.
The first time we met I cried most of the time because it was such a relief to have some information and help.
7. What advice would you give anyone who has been recently diagnosed with NPH?
Don't panic. It can be sorted out and you will be able to get on with your life as normal. Having NPH has changed my attitude to life. I don't take things for granted, so in a way, my life is better.
8. How do you look back on your experience?
I always think that when something negative happens, you've got to turn it into a positive. I was ill, and yes it was awful, but the positive side is that the experience has helped me in my work with the elderly.
For those few months I was like an old person, I can probably understand them and help them a little bit more