Hi J, Got your message on my page! Please do not think you are the only one who has done that! I bet 50% or more of us did. When you have around 15 posts, you will be able to send and receive Private Messages.(PM's) For some reason, posts on threads like Tea do not count as posts. They used to, but it changed. HUGS Lori
Hey there Jeanie, my mother has ALS as well, she is experiencing rapid regression. My oldest sister lives in Long Beach, her or my family as a whole can help with advice and possible help. Perla my sister is a kind young woman 30 years old, please do not hesitate to reach out. Tell your family to do more in depth research, it will help every bit. I am my mother's main caretaker please look into one soon. It's not worth not having help around, due to maybe one day you might not have the energy or strength to due certain things and might cause an injury.
Hi Jean, Lori here. The people you responded to will not see your message, as you posted on your page. To reply, click on there name in blue, and write on there wall. Once you have 15 or so posts, you can send and recieve PM's A goo place is the come for tea thread, will send you a link on FB.
Hi Jeanie. I'm sorry for your diagnosis. The shock can be devastating at first but it gets better with time.
Unfortunately, the clinic is not what it once was. They lost the dietician and then they lost a wonderful Nurse Practitioner named Pat who everyone felt in such good hands with. Dr. M is out of the country right now and attends a lot of speaking engagements and conferences. I feel a little lost there, too, but they know me and it's a convenient drive. I have to stay on top of my own care. I used to go to UCLA...you could try that.
Never had burning or churning in the chest. Chest pains should never be ignored. You might want to get a referral to a cardiologist.
My heart goes out to you. You are so strong and giving in spite of it. Rapid progression?
I don't know how to resolve my living situation. I wrote a little about it in my post. If I stay in my home I am at the mercy of unloving caretakers that I won't have the strength to manage. Other family living situation with son not ideal. Too many things happening so fast. My son doesn't percieve the urgency that I'm sensing by my progression. I have a call in to ALS society for guidance. It's such a fight. Is it worth it? How do you feel now??
My first symptom was nausea, which baffles my Neuro. It crippled me and ive tried everything under the sun. Im living back with my mother with my twins. They have told me its time for hospice, so thats where I am. I got my feeding tube last year, but opted out for the vent. Get all the equipment ahead of time & get in a drug trial! There are great people on here, so any and all questions you have we are here for you! Hugs
Thanks, honey. I know if I wasn't so physically uncomfortable it would help. And with such strange symptoms! Do you see daily changes like I do? What is your situation heathwise and your living situation?
Hi there... Wanted to send you a HUG, because I have been there...Some days the darkness, hopelessness looms. Just remember you arent alone, even though your condo echoes the silence. Try not to focus on next week... Look at today. Its the little things that I find beautiful.... I found my peace in Jimmy Valvano's famous speech, and I hope it somehow helps you....
"There are 3 things we must do each day; Laugh, Cry & Think. If we accomplish that its a Full day,, and if we are able to do that all week, well we have something pretty special!!!"
Sending you my love and shoulder to lean on. Hugs Michelle