I had a quick dx because my father and sister both had some kind of MND. My dad had it for 17years. He still had some use of arms and a little of legs when he passed of heart attack. My sister was dx 2 years before me and she still has only bulbar symptoms (thank God).
I seem to be following my fathers way of progression with my legs being affected after 5 years of only bulbar issues. I am grateful that progression has been slow. I feel that there are so many variants of this disease that you really never know about progression. It is a progressive disease, but progression is so different in individuals that most doctors are unwilling to dx when one has slow progression. I am grateful that mine did b/c it enabled me to get help through agencies that would have been unavailable w/out an ALS dx. Hey ya have to find something to be positive about.
Good luck to you Sally and see you at TEA
I hear you. Now, when were you diagnosed? I'll look when I finish with your message from my heart. I just hang out and talk with my special peeps that know me well, just see my PC when I have a UTI or something treatable, cancel and reschedule meetings with my Neuro and Pulmo if I feel good. So far (after all the bother of being diagnosed anyway) I've only seen my Neuro once and Pulmo once. I do have appointments with both next month that I'll go to just to touch base. Other than that I don't see any point of seeing anyone else! No bother!
I do think you should find new cleaners though. You shouldn't be cleaning. That's too much for you obviously and your energy should be spent doing things like reading or sitting in the sun. Something relaxing! I love ya and am glad to know you my Sallypie.
Thank you for waving. I have been reading the posts that are made but I haven't had the energy to talk into the Dragon. I've been trying to learn how to navigate in my new powered chair and that has frustrated me which means I've been zapped of energy!
It seems like there has been a lot going on in the tea room and most of it has made me smile while some I had even laughed out loud when I read them. That makes my day.
Today I seem to have energy and control of the wheel chair. Before I post anything in the tea room I think I will check out the new posts and see if I can be of help to anyone. Have a good day and again thanks for waving at me when I am looking around the table.
Thanks, KiwiSally. I appreciate your thoughts. It's nice to know I could be helpful.
I'll always happily answer any call for assistance, but I don't spend much time on the Internet anymore at all.
Concentrating on the future, my kids.