Incontinence

Parkinson’s affects the autonomic nervous system, which controls automatic body functions like bladder and bowel movements. This can impact what and how often messages are sent to the bladder and bowel to help them to work. Other contributing factors to incontinence in Parkinson’s may include:

• Medications, this may be from side-effects or symptoms may come and go depending on your medication level. When your Parkinson’s medication starts ‘wearing off’, you may experience incontinence symptoms.
• Reduced mobility (making it harder to reach the toilet or get your clothes off in time).
• Pelvic floor weakness refers to reduced strength or coordination in the muscles that support your bladder, bowel, and reproductive organs. These muscles form a kind of “hammock” at the base of your pelvis and help control when you go to the toilet.
• Constipation, which puts pressure on the bladder.

Types of incontinence experienced when living with Parkinson’s may include:

• Functional incontinence: You may find your muscles and joints used for walking and exercise are more difficult to move. This means you may have trouble getting to the toilet in time and accidentally leak. You may also find it difficult to remove clothes to use the toilet and have an accident.
• Urge incontinence: a sudden, strong need to urinate that’s hard to control
• Nocturia: waking up during the night to urinate
• Urinary frequency: needing to urinate often, sometimes only passing small amounts. This can happen day or night, but you may notice it more in the evening or at night.
• Overactive Bladder: when you have to rush to the toilet and go more often than usual. Having drinks with caffeine e.g., tea, coffee and cola, alcohol, or not drinking enough may make the bladder uncomfortable and make you go to the toilet more often.
• Urinary retention: difficulty fully emptying the bladder, so some of the urine remains
• Constipation-related leakage: hard stool can irritate the bowel and cause loose motions (diarrhoea) to leak out around the blockage.

How can I manage incontinence?

The first step is to have regular checkups with your care team (anyone who is involved in managing your Parkinson’s). Each person experiences Parkinson’s differently and symptoms can change over time. Have your medicines regularly checked and talk to them about your treatment plan. Speak to your doctor or neurologist (specialist) about the problems you are having with your bladder and bowel control. They may be able to treat the problems once they have done tests and looked at the medicines you are on that may be affecting your bladder and bowel control.

The next step is to get your bladder and bowel control checked by a health professional such as a nurse continence specialist or a pelvic health physiotherapist. They will ask you about:

• your bladder and/or bowel symptoms e.g., urgency, nocturia, constipation
• your diet and how much fluid you drink
• how much you can exercise and move about
• medications you are taking
• your medical history and any other illnesses and operations you have had
• other things that could affect bladder or bowel control, such as an enlarged prostate, weak pelvic floor muscles, childbirth experiences.

You may need to have some tests to better understand how your bladder and bowel are working. These can be scans, urine tests and keeping a bladder and bowel diary.

Tips

• Talk to your GP or neurologist: they can adjust medications or refer you to a specialist
• See a continence nurse or physiotherapist: for pelvic floor exercises and bladder training
• Stay hydrated, exercise and manage gastroparesis or constipation: to support regular bowel movements
• Time your medications to reduce “wearing off” effects that worsen symptoms
• Wear clothes that are easy to undo (e.g. replace buttons with velcro fastenings or elastic waists instead of buttons or zips)
• Make sure the toilet is easy to get to, especially at night (e.g. put a movement activated light on your path to the toilet and remove all clutter and tripping hazards from the path to the toilet).
• If the toilet is too difficult to get to or use, there are other options such as handrails, commodes and hand-held urinals. Talk to an occupational therapist who can help you with this.
• Speak to a nurse continence specialist to help choose:
  • continence products (such as pads or pull ups) for leaking wee or poo
  • products to empty your bladder (such as catheters)
  • protectors for chairs and beds.
• Have plenty of fluid throughout the day. Drink well. Water is the best choice. Soup, yoghurt, milk on cereal and custard are also fluid. However, protein is found in milk, yoghurt and custard and can cause Parkinson’s medications not to work well. Wait for 30 minutes before or after taking the medication.
• Keep away from alcohol and drinks with caffeine (such as coffee, tea and soft drinks) as it can make your bladder feel uncomfortable
• If you need to go to the toilet more than 1-2 times during the night (nocturia), then:
  • limit your drinks for at least 2-4 hours before bed and
  • drink more earlier in the day.
• Manage your constipation to keep you going to the toilet regularly for a poo or bowel motion:
  • exercise to get the gut moving, you can take a short walk after a meal
  • stay hydrated, you may not think you are thirsty so you need to track the amount of liquids instead of relying on your thirst mechanism
  • too much fibre may bulk up in your slowed bowel, so beware of too much of a good thing.
• If you have swelling in your legs (fluid retention/ oedema):
  • lift the feet above hip height if possible while you sit during the day
  • spend an hour in the late afternoon lying flat on the bed with your feet lifted above the level of your heart
  • wear compression garments (tight stockings) to stop extra fluid storing in your legs.
• Move as much as you can and keep a healthy weight. Exercise is shown to be very good in reducing the impact of Parkinson’s symptoms, and for your bladder and bowel health. Try walking, strength training, stretching and balance exercises. A physiotherapist or accredited exercise physiologist can show which exercises you can do safely.
• Try to exercise your pelvic floor muscles every day to help your bladder and bowel control. It is important to know how to strengthen these muscles and how to relax them. A pelvic health physiotherapist or a nurse continence can show you how.
• Take your medication on time every time. Bladder problems can be a sign when your medication is wearing off. Try using an alarm to remind you when your medications are due such as on a smart phone, tablet or pill box.
• Go to the toilet only when you need to go. Going to the toilet ‘just in case’ is a habit that over time can reduce how much your bladder can hold.
• Relax and take your time on the toilet so you can empty your bladder or bowel as much as possible.

How do I access support?

In many cases incontinence can be prevented, better managed and even cured. Talk to your family doctor, neurologist, or contact the National Continence Helpline on 1800 33 00 66 (n.b. the National Continence Helpline is staffed by nurse continence specialists who offer free and confidential information, advice and support. They also provide a wide range of continence-related resources and referrals to local services).

• National Public Toilet Map – shows the location of public toilet facilities across Australia toiletmap.gov.au
• Invisible Disabilities Australia – toilet access cards invisibledisabilities.com.au
• MLAK key – 24/7 access to public toilets masterlocksmiths.com.au/mlak

It’s advisable to explore all available pathways to find the support that best suits your individual needs. Look to:

• getting a GP referral to someone with Parkinson‘s experience
• your state-based Parkinson’s organisation for advice on local services to access
• private health to see what is covered in relation to consultations and expenses
• DVA, NDIS or My Aged Care plan supports.