By Rose's request, I will chat a little here about Rick's respiratory beginnings to his ALS diagnosed.
I hope I cover some things that will help.
It is difficult to think back far enough to what came first, second, etc. But Rick and I think that his sleep apnea (severe) came first. 12 years ago Rick's brother had a celebrated occasion to sleep in the same guestroom with Rick, and couldn't stand to sleep in the same room because Rick wasn't breathing right. Who knows how long he was doing it, since he was a bachelor of 59 and slept alone. He didn't go for a sleep study, no matter how much his brother pressed the need..... until he started seeing me, we got engaged, and he listened to my pleads.
So he has had a cpap for over a year, and then the bipap for over six months. While going for a pulmonary visit, we mentioned some of his other symptoms, and that initiated the further testings for what was suspected as some kind of motor neuron disease.
Rick has had trouble walking for years. He used to play tournament tennis, basketball, but couldn't keep his balance to even play a slow game anymore without stumbling and perspiring profusely. Some days you would think he had been drinking, he was staggering so much.
Then, a year ago May I noticed that the calves of his legs were diminishing, especially the right one. He used to have tremendous calves, and the one looked skinny. The pulmonary specialist sent him right around the corner to the neurologist that very day that we pointed out his symptoms. (This was at the VA hospital clinic for sleep apnea.)
That day a blood test was taken and an EMG scheduled, and many reflex tests and questions asked. We were told he definitely had something going on. It took until into the fall of that year 2007 to get the diagnosed of ALS.
We were asked what road we wanted to take. We both agreed that we would want help as time went by, but that if he was comfortable and managing well, we would forego the medical trials.
Rick has morning congestion and occasionally (maybe once or twice a year) gets a bacterial infection in his lungs. We watch for the phlegm to change from clear to colored and then we go get an antibiotic. So far it
hasn't been pneumonia of any kind. Every day it takes many Kleenexes, sneezing, and coughing to clear his chest so he can eat breakfast.
Rick is on a special diet which we know helps with all his physical health. It is controlling his diabetes, healing an injury to his leg and subsequent surgeries, is eliminating the need for blood pressure meds etc.
Rick is walking and driving and working part-time. He cannot back up the car... he has to walk slowly and with determination... he has to take frequent breaks and rest.
His hands are beginning to be stiff ... showing to become mishapened... and he may soon need to wear the bipap during the day. In fact tonight he is wearing apparatus for an oxygen test that he must wear overnight along with the bipap. I have reported that sometimes he skips up to 10 breaths at a time.
Rick is the sweetest, mild mannered man you could ever meet. He never complains or worries. At least he doesn't show it. He is prepared to take on whatever comes.... and I believe he will, with courage and grace. I am a mess!
Please ask a question back if you have one. I'll look here for one... and will answer here.