Very much a private matter, intimacy begins to evolve between a couple when a terminal condition is diagnosed. Especially with a condition as debilitating as ALS.
As a patien, and I speak for my self, you begin to wonder if your partner will continue to be atracted? You also anticipate when you can no longer be intimate. As with anything else, communication is the key, its also natural to have concerns.
From a partners perspective Fear is a big factor. Fear of causing pain, fear of exacerbating the condition and fear of hurting their loved ones feelings. All are natural and valid concerns. This is compounded by one obvious factor, weather the loved one sees their partner as a patient first or not. It’s difficult, understandibly, to get past the wheelchair and other devices, there’s nothing appealing about this.
So intimacy evolves from the physical to just being present. It becomes a simple touch, holding hands or an unexpected caress. A stolen glance followed by a smile. It also evolves into the fun of the chase, 😎 becoming the essential aspect in the relationship.
Everyone copes in their own way, this is why it so personal. It truly becomes a spiritual intimacy, a love to last beyond the here and now.
My point of this post is just to share one more aspect that patients and their loved ones have to traverse on their ALS journey. There are many seminars and one on one counseling available to help patients and their partners navigate through this. Most importantly is just good honest communication.