Let’s Talk About Sex… with ALS

Posted: June 7, 2013 in ALS Related
Tags: , , , , , ,


This was orginally posted on April 23, 2013 at http://thealsexpress.com

Where to start…  First of all this isn’t just about the act of sex.  It’s about intimacy in a relationship when something like ALS enters unwelcome. I can see how one might think the sex aspect only applies to young or new relationships. That’s not the case.  Yes our sexual activity has changed over the years. We haven’t been doing what we did, or as often as the first several years together for a while now; however we have never let the flame go out. We’ve always had fun and made fun. We’ve been able to laugh together about our aging bodies, and still love them.

I’m not saying I wasn’t dreading getting older, but I never wanted the lights turned off before undressing. I never felt ashamed of my aging face and body with Tony and vise versa. Now I will admit to giving in to the public standard of wanting to look 22 forever.  I used prescription creams, had facials promising young glowing skin that will peel away years. I kept my body up with yoga to keep a toned attractive body. The time I most let my body go was in my 20s and even into my 30s with a little extra weight. I had much more important things to contend with than my looks, but even a little fat looks OK when you’re young. I really started getting it all together in my thirties with eating healthy and working out.

Our plan was when I turned 40 we were going to have some fun, really live and enjoy life. Our youngest turned 18 when I was still 36.Our kids would be young adults, but self-sufficient for the most part. It would finally be time for us to do our thing after our lives revolved around them for so many years. It was exciting to look forward to.

Starting at about 38 we were preparing for our time ahead when I hit the big 40. I even started checking into maybe a dab of Botox here and a tad of filler there. I hadn’t fully made up my mind, but I was checking reputations of all the great deals I’d seen advertised everywhere.  I wouldn’t choose just anyone. We’ve all heard the horror stories and seen the people who can’t smile or give you any indication of how they feel because their face is frozen. I’ll take a line on my forehead over that any day. I wanted and more importantly needed my facial expressions. If I was going to do this, it had to be with someone who knew what they were doing and understood the meaning of, just a little. The only other thing I was considering if money allowed was having my breasts lifted and reduced. Actually this was almost a medical necessity, large breasts are heavy and all the years of toting them around took its toll, and the bra indentions on my top shoulders weren’t sexy or comfortable. It would be so freeing to have smaller breasts that stay up where they belong on their own.  We were thinking, talking and excited about the new adventures, the fun we were going to have. There was a bump in the road a few months before with my back injury. I was working hard to get and keep it under control and at the time I fully expected it would happen. That’s not what made our plans come to a complete halt forever.

It was a month, almost to the day before my 40th birthday that completely ended all of our plans, all of them, not just the fun life for us. We had plans for grandchildren adventures too. Everything ended or changed March 28, 2012, the day I learned I have ALS. Here I am practically trapped in my bedroom typing this with only days before I turn 41. This was not part of the plan!

Tony never cared whether I had any injections or breast augmentation. He has always loved me and been attracted to me just as I am, and faithful too, beat that! This means so much to me now that my body has changed so drastically. What’s new is that I have changed. For the first time, I don’t like him seeing me naked. No matter how much he tells me I look just as beautiful to him. I never thought I would feel this way with him. There were times when I put on a few pounds and didn’t feel the best about my body, but I still felt sexy with him. I could still walk sexy and talk sexy.

I think I’ve said in another post, ALS changes absolutely everything. I can’t disguise or direct attention away from anything about my body now. I can’t suck anything in or talk, walk, sit or lay my body in any position that resembles sexy, and I certainly can’t talk sexy. I just feel ugly from head to toe now. Our long burning flame is just a light breath away from going out. We’ve been talking and are determined to not let that happen. It’s not easy though.

My looks and confidence aside, there are other obstacles. I have much less control over movement. I am much less of an active participant because of weakness so it is awkward for us both. It’s also not sexy to need to stop and put on a ventilator mask, even though I’m lucky to have one of the quietest vents, the sound of mechanical ventilation is a mood killer. It is for us. So it has become something we avoid.

There is another huge factor that shouldn’t be left out. Tony puts so much energy into taking care of my needs and worrying about my safety that it’s easy to stay in that mindset. It’s not easy being my caregiver then switching to my lover. He’s scared and grieving just like me. Neither one of us have sex on the mind very often.  I think I’ve given away enough personal details, I’ll just leave it with I can’t do about 80% of what I used to do, We’re both grieving and constantly preparing for the next new hit from ALS. That’s not a recipe for an evening of making love.

I have peace in knowing Tony is here because he loves me no matter what. We did go a long time not talking about this. A big mistake, difficult or easy topic, communication is a must. Talking has eased both of our minds. We have both shared our feelings about this change while being honest.  We went from avoiding the topic to thinking of ways to be intimate without fear. Remember, intimacy doesn’t mean a sex act must be involved.

I spend a little time running my fingers through his hair while he drifts off to sleep. A few minutes here and there of me leaning on him while sitting and letting him hold me securely in his arms. These things are powerful. It renews our desire to fight this fight together, it reminds us both of the bond we share that can so easily get lost in the mess that is ALS, It also reminds and allows us to express the love we share and sometimes shed heart healing tears together. There will come a day when I can no longer run my fingers through his hair. We’ll have to find another way without losing ourselves. Like everything else in a relationship, it will take effort and communication from both of us.

We’ve been through a lot together and kept our love intact. Our love will make it through ALS too. It won’t play out like a fairytale but life is not a fairytale.

To learn more about me and see my image gallery, please visit my website: http://thealsexpress.com

Until next time, take care,


  1. rakoff says:

    April – as you so eloquently demonstrate, this evil disease may steal much of our power, but we are determined it will not steal our humanity. Thanks for your wisdom, insight and strength, and for sharing Tony with us.

    • aprilals says:

      That’s right. ALS takes so much and it’s out of our control. One thing it can’t take is our thoughts. Thoughts can be very powerful.

  2. Thank God for spouses that love us unconditionally!

    • aprilals says:

      I’m so thankful. I couldn’t imagine doing this alone without my life partner who knows me and I him so well. I never want to take what he does for granted.

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