Anna, bless your heart! What a horrible ordeal you have been through, and it's understandable that you are so frightened. My husband's first obvious symptoms happened in June of this year -- poor balance, foot drop, difficulty walking. Thank God, there are no bulbar symptoms yet, but I know that will happen eventually. At first they thought he might have PLS...has that been suggested to you? It does pretty much the same thing as ALS, but your life expectancy is longer. (Purely a layman's explanation!) Also, have you been checked for severe sinus infection? or maybe Bell's Palsy? The diagnosis of ALS is pretty much a process of elimination, so it does take a while. And everyone progresses at different rates. As I mentioned, my husband's symptoms started in June, and a short 6 months later, he cannot walk or even move his feet enough to transfer to or from bed, wheelchair, etc. With me pulling him up or using a hoyer lift, he can stand long enough for me to move the chair up to his back side, and then we very carefully lower him to the chair. So it's been a runaway train for us too! His brother died of ALS last February, before my husband even had symptoms. The brother had bulbar onset, so it was very different for him. They had diagnosed him with everything from myasthenia gravis to PLS to other stuff I can't even remember before they finally determined he had ALS. As it happened, he and his wife were in Germany at the time, and he went to a hospital in Hamburg where he was diagnosed. I hate to admit my ignorance of geography, but how close is Poland to Germany? Could you possibly go there for treatment? It was a wonderful hospital...just thought I'd mention it just in case.
Anna, I'll be praying for you. Somehow, you must find a way to calm yourself. If you believe in God, pray like you've never prayed before. Sometimes we try to do everything by ourselves, and pray as a last resort....pray first, and God will help you. He may not cure you, but He will walk with you every step of the way, and carry you when you can't walk anymore!
God bless you...I'll be checking in to keep up with your progress, so please keep us all informed. Honest, we do care, because we've been in or very near your shoes. As I've said before about this forum, we are all in the same boat...different situations and circumstances, but still the same boat! Hang in there, and keep your chin up!
