I am … A Survivor.
My life has been greatly affected by dysphagia after I had my stroke. Everywhere I go, everywhere I am, I’m always choking on my own saliva. People say to me, “May we help you? Are you ok?” I always say: “No, I’m fine.” It can be really annoying because even though people just want to be helpful, they don’t understand that I can deal with my condition on my own. And besides people who want to help have no clue about how to help. It’s embarrassing and it’s upsetting. For example, if I take a big drink of water I could be choking and having trouble breathing for as long as 5 minutes.
I have discovered a couple of strategies and tactics that help me to manage my dysphagia. First of all, when it comes to drinking water, I have to be very careful and take small sips of water. I had to practice drinking water and other thin liquids. I can drink thicker liquids, like milkshakes or coffee easily. But water was hard for me and I have to practice and take small sips.
Also, I suspect my swallowing problem is strongly related to my speech problem. And one other thing I have found to be successful is to sing my phrases rather than speaking them. I have a big problem with breath control, and if I am asked to sing a song I have a hard time but if I try and sing short phrases I can do that much better. It was a happy accident to stumble upon this technique of singing phrases and it worked!
If I could give advice to a stroke survivor who is learning to manage dysphagia, I would suggest that this person to make sure all of the speech therapy and swallow therapy is serving them. It’s important not to shrug off this therapy. Do your therapy and take it seriously.
When I think about my own experience with therapy, I think my big mistake was that I agreed to ending my therapy too soon. I should have continued for about another month.
I was making very good progress but I wasn’t ready to end my therapy. As a metaphor, I made it to 2nd base but I’ve never gotten home…for me to get around 4 bases I think I needed another month of therapy.
In addition, it’s also important to have a third party be your advocate and talk with doctors and therapists for you and make your way smoother.
I had very good advocacy with my wife and my son.