Well the good news is, everybody says I still look great. The bad news is my FVC went from 58% in Sept. to 44% on Tues. I'm not real pleased with that. On a better note, I started in a study that will track the progression of bulbar symptoms in 100 patients. During testing my soft palate and epiglotis were found to be fine as was speech. She did say breathing wasn't great as well. Met some new patients, saw some friends and learned of a couple of passings that I didn't hear about. Got some info on a W/C van to look at. Left the house at 9 and got back at 6. A long day. Some bad stuff but I try to look for the good. I'd say for the most part it was a good day.
Sorry to hear about your breathing, let's hope it get's better on your next visit. You are inspiration to all of us, so keep on keeping on..
I am sure you are delightful to go to clinic with, I myself would have to look forward to seeing you, so enrertaining. I hope things work out for the van... Keep your sense of humor, it is a driving for so many...
I'm glad you checked in Al. I'm sorry to hear about the FVC, but glad that you look great. With the lower FVC, does this mean that you will be considering a vent? If that question is too personal just ignore it. I am just worry a bit.
Al, sorry to read that your breathing is worse. (we of course already know that you still look terrific!) Do I understand you to mean that your reduced breathing stems from your intercostal and/or diaphragm muscles rather than bulbar ones?
Yes Rose I believe that to be true. I've been on Bipap since Jan. 2005 just for lying down and sleeping. I asked at what point I'd start needing it for daytime use and he said don't worry, you'll know when you need it and remember, when that gets bothersome, we can also do the hole in the neck if you want. I'm glad he's open to the vent idea. A lot of them aren't.
You know, my dad had COPD, he had never ever smoked, it was from another cause, but I remember him struggling so much to breathe. As horrible as that sounds, he also lived a long time like that. I think he could have gotten better care than he did by the medical profession, and I still feel awful that I was not around more for him, but what I'm saying is that with better medical care he could have had a better life, but even with the marginal (IMHO) care he got, he still was happy and had a life that he felt was good. So much is in the attitude, and no one's attitude tops yours, Al.
I'm glad your speech and other bulbar areas still appear to be in good shape, don't want your good merlot to go to waste. (much better to have it to go to "waist")
Hi Al, I don't expect you to remember me, as so many people come to this forum, but am grateful for the help you and others gave me several years ago when I was dealing with my dad's struggle with ALS. I check into the forum now and then to see how people are doing. I am glad to hear you are alright though dealing with reduced breathing. Do not feel you must reply to this post, as I know typing is difficult. I just wanted to say, "Thank You" again.
HI, It was Holly wasn't it? I do remember the user name. Some people do stick in my mind and I seem to remember having quite a few back and forth posts with you. Glad to hear that you stop by once in a while. Take care.