Women and Parkinson's

Parkinson’s affects everyone differently, but for women there are some aspects of life that need particular consideration, namely:

  • pregnancy and breast-feeding
  • menstruation and menopause
  • intimacy and sexuality.

How might Parkinson’s affect women?

Although almost 50% of people with Parkinson’s are women (the incidence in men is fractionally higher), there has been very little research into the additional challenges that women may encounter. In fact, most information is anecdotal rather than based on clinical research and tends to emerge as a result of the sharing of problems. However, not everyone is forthcoming with their difficulties so the overall picture is perhaps not truly representative of the broad range of women’s experiences.

Pregnancy and breast-feeding

The number of pregnancies in women with Parkinson’s is very small (most likely due to the fact that most people develop the disease later in life), so evidence is extremely limited and consequently many questions remain unanswered. It should be stressed, however, that most pregnancies in women with Parkinson’s have successful outcomes. 

Symptoms

Pregnancy affects the body in many ways – both visible and within the body. Hormonal changes may affect your brain’s sensitivity to dopamine, which in turn can affect symptoms, particularly tremor. Stress can compound problems too. How your Parkinson’s is affected will be very individual. For some women there is no sudden progression or increase in symptoms at all.

Balance

Changes to body shape and a shift in the centre of gravity during pregnancy can affect balance and may make falls more likely if you have Parkinson’s. Ask your doctor, Parkinson’s nurse or a physiotherapist for advice on balance and the use of a walking aid if needed.

Slowness of movement and fatigue

Pregnancy tends to slow your movement, and Parkinson’s can also do this, so make sure you allow extra time to carry out everyday tasks and build in time to rest during the day as you are likely to get tired more quickly. Try to ensure that you get eight hours sleep at night too.

Nausea and vomiting

Morning sickness, which can occur at any time of the day, may mean that medication is lot during vomiting and therefore less effective. Vomiting can also lead to dehydration and a general malaise. Speak to your doctor for advice. Common anti-nausea medication such as Stemetil and Maxalon should not be taken in Parkinson’s.

Small but frequent meals throughout the day may help. Avoid fatty and spicy food. Starchy foods such as dry toast or cereal may help with nausea.

Constipation

Constipation is a common Parkinson’s-related problem in pregnancy, increasing the risk of urinary problems and haemorrhoids. Drinking plenty of fluids and eating a diet rich in fibre can help. Avoid drinks which contain caffeine, such as tea, coffee and coke, as these are likely to make you pass water more often.

Medication

Unfortunately there is insufficient experience to draw any reliable conclusions regarding the safety of Parkinson’s medications during pregnancy. The advice given to doctors is that all medication for Parkinson’s should not be given in pregnancy. This may be due to the lack of safety testing in human pregnancy rather than because of scientific evidence that they are unsafe.

However, there have been a number of cases reported in medical journals (approximately 35 pregnancies) where women with Parkinson’s have given birth to healthy babies while taking their usual medications. There are only two cases reported (out of 23 pregnancies) where women taking levodopa had problems, and these cannot be proved to be linked to levodopa therapy. Animal testing suggests that selegiline should not be taken, although there is one recorded case of a woman who gave birth to a healthy child after taking selegiline for the duration of her pregnancy.

There is, however, strong evidence that amantadine should NOT be taken during pregnancy as it may affect foetal development.

The reality is that the amount of evidence so far is inconclusive, so if you are or wish to become pregnant, you should discuss the risks with your neurologist, obstetrician or Parkinson’s nurse specialist if you have one.

If for any reason your dosage of medications is reduced, you will probably find that your Parkinson’s symptoms are less well controlled. This, combined with hormonal changes, and pregnancy-associated stress, may exacerbate symptoms. In this situation controlling stress is generally preferable to taking further medications. For further information on stress and how to overcome it see Stress.

Breast-feeding

Unfortunately there is currently insufficient evidence to establish whether it is safe or not to breast-feed when taking Parkinson’s medications.

  • Levodopa and MAO-B inhibitors (selegiline, rasagiline) – it is unclear whether they pass into breast milk and, if so, what effects this could have on the child
  • Dopamine agonists (e.g. ropinirole, pramipexole, rotigotine) - can inhibit the production of breast milk, but it is not known if they pass into the milk itself and, if so, what effects this could have on the child
  • Amantadine and COMT inhibitors (entacapone, tolcapone) - do pass into breast milk but the effects that they might have on the child are as yet unclear – they should therefore be avoided during breast feeding
  • Domperidone (used to combat nausea caused by other medications) - increases the production of breast milk but is secreted in it so caution is required.

If you take Parkinson’s medication and plan to breast-feed seek advice from your doctor, obstetrician or Parkinson’s nurse.

Menstruation and menopause

Menstruation and menopause can pose extra challenges if you have Parkinson’s. Although these have received little recognition in the past there is now growing interest and research is underway to evaluate treatments.

Menstruation

It has been suggested that as many as 11 out of 12 pre-menopausal women with Parkinson’s experience a worsening of their symptoms (particularly tremor, dyskinesia and rigidity) and reduced effectiveness of their medications a few days before and during menstruation1.  

Treating premenstrual syndrome (PMS) is generally the first line of approach but you may find it helpful to discuss this with your neurologist too as in some cases that taking additional Parkinson’s medications during this part of the monthly cycle appears to help.

Research shows that many women suffer increased menstruation problems following the onset of Parkinson’s, in particular more bleeding and associated pain. Women have also expressed concern regarding their changing body image; some felt unattractive and changed their dressing style to cope better with their symptoms, and others described feeling a sense of loss1.

Using sanitary products can be particularly difficult if your symptoms are not well controlled. You may find it helpful to time changing them when you are ‘on’ and have good control.

If menstrual problems are severe then your doctor may prescribe medication to suppress ovulation, although this can worsen some Parkinson’s symptoms.

Medication does not always help and if problems are severe then the following options might be considered:

  • hormone therapy using a combination of oestrogen and progesterone to suppress ovulation
  • surgery, including removal of the lining of the womb or a hysterectomy
  • radiotherapy of the ovaries to induce a premature menopause.

These can all have side effects - hot flushes, for example - but women are all affected differently so what works for one person may or may not work for another.

Menopause

Menopause can affect sexual desire and function in every woman and quite often these changes occur around the time that Parkinson’s is diagnosed. For some, menopausal symptoms such as sweating can worsen symptoms. There can also be confusion between the symptoms of menopause and Parkinson’s –fatigue, depression and increased sweating for example can occur in both conditions.

As with menstrual problems, Hormone Replacement Therapy (HRT) can be helpful in some cases although research and evidence into its use in Parkinson’s is rather limited. If you experience vaginal dryness (a common sign of menopause) ask your doctor about the use of a vaginal HRT as this may be more helpful than an ordinary lubricant.

Talk with your doctor about any menopause related problems you have. They may involve a gynaecologist or other women’s health professional who should then liaise with your doctor so that both conditions are treated effectively.

Intimacy and sexuality

Sharing and receiving affection are important aspects of maintaining a close relationship and can contribute considerably to overall quality of life. This can range from a cuddle or holding hands to sexual intercourse. If your Parkinson’s makes you feel less comfortable with intimacy, this may upset the balance and harmony in a relationship. Some people say that they no longer feel attractive, making them feel less inclined to engage in sexual activities.

The importance of discussing openly with your partner any concerns you have cannot be underestimated. Make time to tell each other how you feel and be a good listener, putting yourself in your partner’s shoes to understand their view. Hidden fears or anxieties could lead to resentment and tension. But good communication can help prevent such barriers forming, make the relationship stronger and encourage you to find solutions together. And if you need further help then you can seek the advice of a trained professional, such as a counsellor, physical/psychological therapist or sex therapist. There are also support organisations in most countries that can offer guidance.

As with most long-term illnesses, sexual drive or libido may decline in some people and levels of desire can vary from one day, or even one dose of medication, to another. Routine can often lead to a reduced sex drive so if you become less interested in sex you might find it helps to change your patterns of activity – this can both enliven your relationship and inject fresh energy into your sex life.

Sometimes spontaneity can be lost if sexual activity needs to be timed around medication taking effect, but there is nothing wrong with planning ahead for intimacy and setting aside some quality time. So, don’t be put off – try to adapt to your needs or limitations as they evolve.

Parkinson’s can sometimes affect arousal levels and orgasm - this is frustrating, yet quite normal so try not to become despondent. Orgasms are possible, but tend to be reached with several smaller peaks.

Medication

Some medications can affect sexual function and interest – for example dopamine agonists may induce hypersexuality - which can cause tension in a relationship. If you notice any significant sexual changes discuss these with your doctor so that your medication can be adjusted..

See also: Sex, sensuality & intimacy.

Mobility

Reduced mobility in general will naturally affect mobility in the bedroom so talk to a physiotherapist if this is a problem as they will be able to suggest ways to help. It is important to control symptoms such as tremor, rigidity and fatigue as these can make intimacy more difficult. If you find that your symptom control worsens discuss this with your doctor so that medications can be adjusted.

Some people worry that energetic sexual activity, as with any strenuous exercise, may worsen Parkinson’s symptoms and cause medication to wear off faster. But physical activity is almost always beneficial and can be a positive distraction from day to day problems. For more information on the benefits of exercise see Exercise.

Depression and anxiety

Parkinson’s may lead to depression and anxiety which, in turn, could heighten any underlying worries you have about sexual activities. If you feel depressed or anxious then discuss this with your doctor, as carefully chosen antidepressant medications can be very effective. A healthy diet and keeping active can also help with general wellbeing and quality of life.

Research involving a group of women with Parkinson’s, aged 35 to 59,  revealed that many were anxious about their bodies and sexual image1. Unfortunately, such concerns are rarely addressed by doctors and nurses2 so if you feel this way and you think your doctor isn’t taking this seriously, you should talk with your partner, a sex therapist or counsellor.

Remember too that intimate activities, such as touching, kissing, hugging or massaging each other can be just as good as sexual intercourse and can give a wonderful sense of closeness without feeling anxiety about your sexual limitations. The ability to focus on giving and receiving affectionate touch with your partner may later also enhance your sexual function. Reminiscing about the past can also be helpful, and remembering romantic moments can rekindle your passion for each other and help you to step outside your life as it is for a while. And never think that you are too old for intimacy or a healthy sexual relationship!

References:

  1. Posen J, Moore O, Tassa D, Ginzburg K, Margalit D, Giladi N (2000). Young women with PD: a group work experience. Social Work in Health Care, 32(1), 77-91 - view abstract
  2. Schartau E, Tolson D, Fleming V (2003). Parkinson's disease: the effects on womanhood. Nurs Stand, 17(42), 33-9 - view abstract.

Who can help and how can I help myself?

There are a number of trained professionals who can help with a range of queries or problems. Your doctor, or Parkinson’s Disease Nurse Specialist (PDNS), depending on the country in which you live, will be your first contact and they will put you in touch with a suitable specialist:

  • A counsellor, physical/psychological therapist or sex therapist in the case of problems relating to intimacy and sexual relationships
  • an obstetrician for matters relating to pregnancy
  • a gynaecologist for matters relating to menstruation or menopause.

All are trained to deal sensitively with what might seem difficult subjects and will be able to reassure and advise you.

How can I help myself?

One of the most important steps you can take is to discuss openly the problems you experience or worries that you may have. Effective communication with both your partner and healthcare professionals can mean that problems are treated quickly and effectively before they worsen.

Adjusting medication can sometimes overcome problems so you can also help enormously by monitoring your symptoms and taking notes so that your doctor can make any necessary changes. For further information, see Keeping a Diary.

If you find it hard to talk to healthcare professionals about intimate problems then see if your local Parkinson’s association has any information sheets with suggestions on how to broach the subject.

Acknowledgement

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