Sexually alive with Parkinson’s Disease – A new perspective on sexuality
1. A new perspective on sexuality: An ongoing journey
We are born sexual beings and we die sexual beings. What keeps on changing throughout our lives, is how we speak, express, enjoy, hate, develop, stunt, grow, and adapt our sexuality throughout our lives.
Nelson has said about sexuality:
“We are being called and given permission to become body words of love.”(1)
This statement fills me with hope: It helps me to realise that in spite of the worst possible scenario, our bodies and our being can still be vehicles of love, closeness, tenderness and passion. We can choose to adapt and change our journey although we are different.
I have been privileged to experience this with my husband in our marriage of 31 years, his journey with Parkinson’s disease, and even more, sitting with patients who had to go through:
A spinal cord injury and adjust to new ways of caressing because of his paraplegia;
A stroke that robbed the ability to walk and talk but touching with one hand remained as well as the ability to relax when the healthy side of the body was caressed;
The woman with the second mastectomy whose husband had to nurse her wound and his own anxieties and after her death, give himself permission to enjoy a new relationship after years;
the patient who struggled with ED after his radical prostatectomy and hormone treatment and decided not to take medication for ED, because their relationship has stabilised on a limited level of intimacy after her chemotherapy; for him adapting in their sexual relationship was accepting that he could still be healthy, exercise and masturbate when needed.
Others with extra-marital affairs, sexual abuse, MND, amputation, grief, depression, bipolar mood disorder, Premature ejaculation, ED, Vaginismus, Lack of desire, Anorgasmia. Everyone of these patients made their individual decisions to adapt/ not, to use medication and counselling/ or not in moving on in their lives.
In moving on, we need to remind ourselves of some basic facts:
Our biggest sex organ
Our biggest sex organ is our skin. Laura Berman reminds us:
”The right touch can be as intimate and erotic as sex itself”(2)
But to allow our erotic minds to stay alive, we need to get our most important sex organ, our brain, on our sides.
Our most important sex organ is our brain:
Parkinson’s disease is the result of Substantia Nigra Cells that stopped producing Dopamine, leading to the motor and non-motor symptoms. But the rest of the brain is still working and can help one to adjust.
Understanding and discussing the illness, accepting it and and it’s effect on sexuality, is part of accepting and moving on. It leaves one with more choices, especially if normal functioning, sexual responses and differences between men and women as well as the effect of ageing on sexual responses are taken into consideration.
Sexual functioning depends on the neurological, vascular and endocrine systems allowing sufficient blood supply to and from genital organs, a balanced hormonal system and a healthy emotional state. Sexual functioning is influenced by psychosocial factors, family and religious background, the sexual partner and individual factors such as self-concept and self-esteem. Sexuality can be changed by aging, life experiences (e.g. abuse) and various illnesses and their treatments.(3) (Verschuren, et al,2010)
Sexual response has identifiable stages – desire, arousal, climax, and resolution which are accompanied by bodily changes.
Desire occurs when we see, smell, hear or experience emotions that trigger sexual energy and sexual potential is awakened.(4)Loving sex
During sexual arousal the heart rate quickens, cheeks flush and pupils dilate.
A woman’s nipples become erect and blood flow to the genitals increase. In the woman the vagina becomes moist (vaginal lubrication), the clitoris ( which is 10-12 cm in length) fill with blood. The speed of response by the clitoris depends on whether it is stimulated directly by touch, fingers, mouth or erect penis or indirectly by touching of other erogenous zones.
Because of its position, the clitoris is not stimulated directly during intercourse, so movements of the penis on its own are often insufficient to excite the clitoris to orgasm. Additional touch by fingers or mouth (masturbation by the partner or self) may be necessary to reach orgasm.
As sexual excitement increases the vagina lengthens and distends and the colour of the vulva change from pink to dark purple. During orgasm the vagina and uterus contracts 3-15 contractions at 0.8 second intervals. Women may have multiple orgasms or experience arousal without achieving an orgasm. After orgasm, the body relaxes and the vagina and clitoris return to normal, resolution.(4)Magic of sex
A man’s response to sex starts in the brain when he is aroused by something real or imagined. (predominantly visual stimulation or conditioned experiences).
The penis becomes erect and internal and external body changes occur. A “sex flush” that may appear over his abdomen, chest, neck and face, nipple swelling and increased heart rate, breathing rate and blood pressure. A feeling of “inevitability” is experienced two to three seconds before ejaculation and a drop of fluid may form at the urethral opening of the penis prior to ejaculation.(secretions from Cowper’s gland)
Orgasm occurs with simultaneous muscle contractions and rhythmic contractions of the penis and ejaculation. Orgasm and ejaculation are two separate processes and may, or may not occur at the same time. One can occur without the other.
During resolution , the penis becomes flaccid following intercourse and the man will not get another erection for some while.
3. Ageing and sexuality
The majority of older people still find sex thrilling and energy –giving; neither heir desires or capabilities vanish. Sex may wane a little in frequency and vigour, but not in sweetness and satisfaction.(4)
In both sexes, the sexual impulse declines with age but the general pattern differs in men and women. A man’s sex drive reaches a peak in late teens and thereafter gradually diminishes. A woman’s sexual feeling reaches a maximum much later in adult life, is sustained on a plateau of responsiveness which tends to decline in her late 60s. Much research support the existence of a strong sexual urge in 70- and 80-year old women and men.(4)
Goodwill, caring, thoughtfulness, a desire to comfort and shared intimacy keep long term relationships alive and mutual respect and affection help couples to remain close.(4)
Sex and the older man
Until about the age of 50, men’s sexual responses stay stable. This is due to the testosterone levels remaining consistent through to his midlife.
Changing in sexual activity need open honest discussion to maintain a loving relationship.
· Desire levels drop according to testosterone levels
· Arousal changes – erections become more unreliable, erectile dysfunction more common; 40% chance of ED over the age of 40, 50% if over 50. ( MMAS; Feldman et al)
· Orgasms are less intense and frequent.
· Orgasms are prolonged.
· Orgasms may happen without ejaculation
· He may need days rather than hours before he is ready for intercourse. The resolution phase prolongs (5)
Coping with the changes, may need more active involvement from the partner. Changing the emphasis of sexual activity to longer and stronger foreplay, more tactile stimulation including caressing, rubbing, cuddling and the use of different sexual positions. The partner becoming more active as initiator.
Erectile dysfunction may be the indicator of other health issues, especially endothelial dysfunction, causing cardiovascular disease. Medical evaluation to rule out underlying cardiovascular disease, DM, Testosterone deficiency or a neurological disease is crucial.(5 )
Sex and the older woman
Studies show that women have a more stable sex drive than men. Women over sixty-five continue to seek out, and respond to, erotic encounters, have erotic dreams, and continue to be capable of orgasms, even multiple ones. (5)
She can however expect the following sexual- response changes:
· Decreased desire
· Arousal takes longer because vaginal blood flow and genital engorgement are reduced; vaginal lubrication is delayed and reduced in quantity.
· Reaching an orgasm takes longer due to a decrease in vaso-congestion of the clitoris and vagina, as well as decreased sensitivity.
· Decrease of breast and nipple erection.
· Orgasmic capacity is retained- even multiple orgasms are still possible.
· The number and intensity of vaginal contractions is reduced.(5)
The availability of a partner and the opportunity for regular sexual activity are the most important factors influencing sexual behaviour. Masturbation is instrumental in keeping alive an older woman’s sexuality and sexual identity, and it will keep her physiological responses in good working order (especially during widowhood).(4)
Managing changed sexual response may need more use of fantasy, openness about the kind of sexual touches that turns on and using additional lubrication or vaginal hormonal cream to prevent painful penetration and using hormonal replacement.
Use leisure time for leisurely sex, give more attention to foreplay and introduce something new like oral sex, sex toys, masturbation, new positions to increase arousal and desire.(5)
A satisfying relationship is crucial to enhance sexual responses.
4. Sexual dysfunction
Sexual dysfunction is not uncommon in the general population. It is linked to risk factors such as age, smoking, DM, CVD, other chronic diseases, menopause and ageing in the
male. It is multifactorial in chronic, neurological disease.
Sexual dysfunction in Parkinson’s Disease
Sexual dysfunction is common in PD and associated with depression and relationship dissatisfaction.
Women: 75% difficulties with arousal &orgasm
50% low sexual desire
Men: 70% erectile difficulties
40% premature ejaculation
40% delayed orgasm (6)
In the general population without health problems, estimates of sexual problems vary from 10-52% of men and 25-63% of women.(7)
5. Sexual function is interfered with by typical PD symptoms
1. Muscle rigidity, bradykinesia and clumsiness in fine motor control affect the ability to undress, touch and caress and indirectly the willingness to initiate. The slowness of movement , tremor or rigidity may interfere with practicalities of lovemaking.
Undressing your partner with PD can become a necessary but also playful part of foreplay.
A hot bath or shower before lovemaking, may lessen muscle stiffness and tiredness.
Changing roles: the woman becoming the more active initiator if the man has PD
The man spending more time to make his female partner with PD feel safe before caressing and touching.”Studies suggest that feeling safe may be the most important factor in determining whether or not a woman reaches orgasm.”(2)
2. Sexual functioning may be worse in late evenings, especially with daytime scheduling of medication.
Rescheduling night time lovemaking to mornings could overcome this problem.
If you do feel sexual attraction, even if it is at a bad time for medication, follow your desire. Additional lubrication, or extra stimulation with a vibrator may surprise both of you.
3. PD medication can lower sexual desire or can enhance desire.
It is more often the associated depression, fatigue associated with PD or relationship strain that cause a lack of libido.
Increase in desire may occur with levodopa and deep brain stimulation.
4. Tremor , dyskinesias can be enhanced during sexual arousal.
Accepting this as a compliment rather than a “put off” may bring some humour and a change in attitude.
Switching your side of the bed, may enable touching and caressing with “the better side”.
Use positions that will lessen the strain on stiff muscles (side by side)
5. Hypersalivation and sweating
Has never been a turn on!!! Shower/ brush your teeth/ suck a sweet.
6. The mask–like face may reduce the appeal for the partner. Subjectively it influence the self–image of the partner in a negative way.
Deliberately practise open eye kissing, smiling while you caress.
Try to look into your partner’s eyes while you have an orgasm.
7. Men can have problems getting and keeping an erection.
Causes: lack of dopamine/ anti-depressants/performance anxiety/ other physical causes.
8. Treatment of ED:
Sildenafil 85% efficacy in PD patients with depression
Tadalafil & Vardenafil are also effective.
It enhance the response to sexual stimulation. The partner remains crucial.
Sildenafil should be taken 1 hour before intended sexual activity.
Often the larger dose needs to be used.
A longer time of onset is needed because of slowed gastrointestinal mobility.
It can be used once / twice per week.
9. Contra –indications for PDE5I
History of priapism (prolonged erection)
Coronary artery disease
10. Non-responders to oral treatment
Intrapenile injections of Alprostadil
Taught under medical supervision
Vacuum-device : rarely adopted by elderly
Difficulty placing / removing bands, bruises
11. Ejaculation problems with PD
Rapid ejaculation: SSRI like Sertraline/ Paroxetine
Rapid ejaculation linked to ED: Sildenafil may help both
Delayed ejaculation: ejaculation is a reflex
Increased stimulation with a vibrator
Share this information with the partner
Decrease marital tension , embarrassment
12. Women may experience vaginal dryness
Use additional lubrication to prevent pain with penetration.
Give more caressing/ foreplay.
Use a vibrator for clitoral stimulation to ensure an orgasm.
13. Women may struggle with urinary urgency and incontinence
Empty the bladder before lovemaking
14. PD symptoms worsen at night / sleeping apart reduces opportunities for spontaneous sex
Talk frankly and openly about sexual needs. Communication is the best remedy for all relationship problems.
Consider outercourse if intercourse is not an option.
15. Depression and the use of anti-depressants in PD are common.
Both are associated with higher frequency of Sexual dysfunction.
PDE5I are recommended for arousal problems( ED or lack of lubrication)
16. High prevalence of Testosterone deficiency in elderly PD patients
20-25% of males over 60 years
Depression, fatigue, decreased libido, ED, decreased work performance
Respond to testosterone treatment.
Motor and non-motor symptoms of PD improved with daily transdermal T-patch.
17. Hypersexuality in PD
Rare side-effect of Dopamine agonists, Levodopa, Deep brain stimulation.
Discuss adjustment of dosage / medication with your neurologist.
18. Issues for the person who has PD
Besides the effect of the condition and the medications, sexual problems may develop because of a negative body image, reduced self-esteem, depression and grief, anger and stress.
Open communication and understanding are