Living with bladder and bowel problems and Parkinson's

Karen is from Glasgow and was diagnosed with Parkinson’s 3 years ago, aged 52.

For some time before I was told I had Parkinson’s, I’d noticed that if I needed the toilet I would have to go immediately.

I started to wear pads and had occasional accidents. When I was diagnosed, it was a bit of a lightning bolt - suddenly my symptoms made sense.

I have an ‘I can’t wait’ card in my purse that I show people if I need the toilet. But I once showed a shop assistant my card and they wouldn’t let me use their toilet. By the time I found a cafe, I’d had an accident. I always have extra clothes with me for this reason.

At night, I self-catheterise. It wasn’t easy to start with, but once I’d done it a few times, it got much easier.

I would encourage anyone who is experiencing bladder problems to see their GP. Don’t be embarrassed - it’s better to get the help you need, than no help at all.

Robert is 70 and lives in Bedfordshire. He was diagnosed with Parkinson’s 4 years ago.

Constipation means I can spend up to 45 minutes on the toilet. Afterwards, I’m often in so much discomfort that I need to lie down.

I empty my bladder 10-12 times a day. Flow is limited and I have to apply pressure to release the urine slowly.

I’ve altered my diet to include more fruit and vegetables and I take Fybogel, which increases the fibre in my diet. When I’m physically able to, I also do some form of daily exercise, such as walking.

I accept these are symptoms of Parkinson’s, but I still feel frustrated and embarrassed.

When I leave the house I wear TENA pads and carry a rucksack with a spare set of clothing, baby wipes and toilet roll in case I am caught short. I also make sure I wear my Hidden Disability sunflower lanyard, which allows me to access facilities in an emergency.

Jayne is 58 and lives in Dorset. She was diagnosed with Parkinson’s in 6 years ago.

For 5 years leading up to my diagnosis, I had chronic constipation. When I was diagnosed with Parkinson’s, my neurologist said that constipation was an early symptom of the condition.

My symptoms can include a bloated stomach, nausea, food not digesting properly, pain in my tummy and bottom. More seriously, impaction has led to a hospital visit. (This is when the bowel is loaded with hard stools and it becomes difficult to pass anything).

It can be very debilitating. Worst of all, it can affect how my Parkinson’s medication is absorbed, which then causes my motor skills to get worse.

I take medication for the symptoms. Exercise also helps and I have to be mindful of what I eat. I mainly stick to a high fibre diet with plenty of water, fruit and vegetables. There are definitely no takeaways or over-processed food – it’s boring but it works for me!

• Find out more about bladder and bowel problems.