On October 12th, Kim and I went to the DMC for a follow-up visit for Kennedy’s disease. We saw a new doctor there, as my previous one moved out of state. She was really nice and we discussed things that I discussed with my previous doctor so she could establish where I was at. DMC medical interns examined me and had me do basic strength tests, good news is nothing changed from my last visit.
The doctor brought up things such as diabetes, high cholesterol, swallowing issues, as well as snoring, which are all common things for Kennedy’s patients. I told her that I was being treated for high cholesterol, my sugar is monitored every few months, and that I have a CPAP machine for sleep apnea. While I saw a speech therapist back in July, she wants me to have a swallow test done.
I tend to cough while eating and seems like every time I have cold or sinus infection it always takes at least a week or two to stop coughing. Now we know why. Kim has noticed that I cough weird, like an engine that can’t quite turn over. The doctor recommended flu shots once a year as well as a pneumonia booster vaccine once every 5 years.
As carriers of Kennedy’s disease, my grandmother and mother both cough similar to me. Carriers can have minor symptoms of the disease and I believe these are signs of them. I remember when my grandmother was alive, it would take her weeks to get rid of a cough.
The DMC is supposed to contact me so that we can schedule a swallow test. The more we can do now to help treat these symptoms, the better off we’ll be later. Just by being aware of the symptoms and effects is half the battle.
Many Kennedy’s patients die from the symptoms and other issues, rather than the disease itself. Both Kim and I are concerned about aspiration into the lungs, so we will see what the test shows and go from there. I’m glad that I’ve never smoked, because it would make it so much worse.