While out with her daughter, a woman had a simple question that led to a deep realization.
The 73-year-old mother from Missouri stumbled and asked if her daughter had Parkinson’s disease. She didn’t, but it made her think. Recently, my husband’s handwriting has been decreasing. She found a list of the 10 most common signs of Parkinson’s disease online. Her husband had everything except one.
A neurologist later confirmed her suspicions. Her husband, 69, had Parkinson’s disease. And like all couples forced to face this progressive disease, their lives have not been the same since then.
They can’t travel like they used to. Their daily lives have changed. Daily life has become more difficult.
The same goes for sex.
That’s an aspect of the diagnosis that most people don’t talk about, she says. However, the American Parkinson’s Disease Association (APDA) says that decreased sexual desire is “virtually inevitable” in Parkinson’s disease. Compounding the problem, women say, is the shame of talking about it. She and her husband requested that we withhold their names to protect his medical privacy and given the sensitive nature of the topic.
Dr. Rebecca Gilbert, a neurologist and chief mission officer at APDA, says many couples facing Parkinson’s disease struggle with the impact it has on their sex lives. To help with this, APDA recently launched the ParkinSex kit, a box of books, card games, and items aimed at supporting couples exploring what’s sexually possible even with Parkinson’s disease.
“There are all kinds of obstacles and barriers, and I think a lot of couples throw up their hands and say, ‘Well, this is probably not part of how we’re going to do things going forward,'” Gilbert says. “And that’s what we wanted to rally against.”
What a Parkinson’s Disease Diagnosis Means for Sex
Parkinson’s disease, a neurological movement disorder, is progressive, worsens over time, and is accompanied by both motor and non-motor symptoms. Common motor symptoms include tremor, stiffness, and slowness of movement, while non-motor symptoms include anxiety, depression, sleep disturbances, and fatigue.
Gilbert said many couples are afraid to even discuss the effects on their sex lives with their doctors. Therefore, many people use online bulletin boards where they can participate anonymously. On Reddit, people are sharing their personal sexual experiences with the disease, offering tips and support to each other. Some of these posters depict Parkinson’s disease itself. Some people are looking for guidance on how best to love their loved ones.
Gilbert says the big challenge with Parkinson’s disease is the diversity of the disease. For some patients, sex is not an issue at all. For others, it is virtually impossible. For many people, it’s somewhere in the middle.
The key, Gilbert says, is to expand your perspective on sex. Parkinson’s disease may make sexual intercourse impossible. But other forms of intimacy, such as touching and exploring other sensations, can help couples stay connected and enjoy the erotic aspects of their relationship.
ADPA’s box comes with not only massage stones, but also a blindfold that can enhance other sensory experiences, Gilbert says. The book also offers recommendations such as taking a bath together and lighting candles to help couples get into the right mental space.
“Actual sex is the best,” says Gilbert. “But if that’s not possible at some point, there are other ways to have an intimate, sexual relationship.”
With Parkinson’s disease, it is also common for many romantic relationships to involve caregiving. When something like this happens, Gilbert says it’s important for couples to still see each other in a romantic and sexual way, even if the disease changes aspects of their relationship.
“This is a diagnosis that completely changes how you see yourself and how you see your future,” Gilbert says. “But there are many ways to maintain your quality of life for a very long time, and it can take some time after diagnosis to wrap your head around and accept this new reality.”
“It’s much more than the act of sex.”
Chronic illness always involves some kind of sadness. It’s the understanding that life will never be exactly the same.
One night, after sex, a Missouri woman and her husband had a candid conversation about the painful reality that the world is shrinking. It makes her cry. it makes him angry.
But just as Parkinson’s disease has expanded the way we view sex, it has also expanded the ways we show our love for each other. No matter how frustrating they feel, they never forget to say “thank you.” they kiss frequently. They always say “I love you”.
“While we’re here, we have to tell them that we love them, because one day they won’t be,” the woman says.
She wants other couples who are struggling with their intimacy due to chronic illness, especially Parkinson’s disease, to know that they are not alone and that they don’t have to give up on sex completely. And they should never give up on each other.
“This can be a very devastating disease, but you can still show love to each other. It may not be the same for you,” she says. “You can express your love for each other, even if it’s just by kissing or holding hands, which people consider the ultimate of all things, especially these days. … You just do everything you can to express your love for each other. It’s so much more than just the act of sex.”
