Almost Normal

The subject of PALS and sex has come up again in one of the Facebook ALS groups. This is a steady topic with regular questions and comments. Perhaps the fact that it comes up so consistently is a testament to the desire of PALS to live as much of a normal life as possible. Perhaps we are just like everyone else, normal, in other words. However even though ALS does not impact sexual function, many PALS express frustration over the difficulties and challenges of maintaining a vibrant and active sex life while in the throws of this disease.

There has been very little research into the impact of ALS on sex and relationships. First of all, it's a small research cohort. Secondly, doctors are more interested in researching the etiology and physical impact of ALS, not the impact on our social and sexual interactions. In other words, just as we want a cure first and foremost, so does the medical community. Nonetheless there have been a couple of interesting studies in this area.

In a 2004 study, researchers asked 91 PALS to participate in a questionnaire study on ALS and sex. The first thing of note is that of the 91 people asked to participate, only 62 did! It just goes to show you that this is a touchy subject no matter what group you approach. In this particular study the average age was 56 with a range from 48 to 80, so it should come as no surprise that the largest single contributor to sexual dysfunction within the study group was "decreased libido". Welcome to middle age. The study also found that sexual satisfaction and participation decreased as age increased. In other words, PALS are just like everyone else.

On the other hand there are more challenges for PALS when it comes to sex. For most PALS the study found that sex was directly impacted by the general weakness from ALS as well as by physical interventions like breathing tubes and feeding tubes. Body image and the havoc wreaked by this illness also had a substantial impact, generally increasing the sexual passivity of those in the study. On a bright note, six PALS in the study were ventilated and five of them reported that they had sex at least once a month, so there is life after ventilation!

I think the most important conclusion from the study, and one that I hear about from lots of PALS online, is that "sexuality is important in ALS. The prevalence of high sexual interest, and the level of sexual satisfaction ... and sexual activity is high despite physical limitations."

Your sex life starts in your brain. PALS have that part up until the very last moment of their lives. This study simply shows that we are like everyone else, with a couple of additional challenges. We are embarrassed about our bodies, we are anxious about our performance and capacity, we have the same libido and desire as anyone else our age. In other words, we are almost normal.