Happening too fast

[Jeannie]

Hello All,
I have only posted once before on this a month or two ago but I read everyday, as you are all down to earth and honest.
My mother in law was diagnosed in Jan (1st. symptoms started last March) Anyway, the social worker I spoke to said that she has als that is taking her with a vengince (sorry for spelling)
I am just so shocked how fast this is all happening. She has lost her ablilty to speak, eating is horrible it took her an hour to eat a hot dog, and she is losing a tremendous amount of strength in her arm.
I guess I am just wondering does anyone else have bulbar onset with very rapid progression?? I don't know if this is "normal" or that I am just feeling sorry for myself and my family as to how quickly we are losing her
Thank you all for your support and help
Jeannie

[andyvaughn]

Jeannie,
I finally have some HOPE to offer. My husband also has bulbar onset, his first noticable symptom was slurred speech in January 08, although in hindsight I think that the onset was more like November, as he started "chewing" in his sleep then, waking me at night. Anyway, in January slurred speech, followed almost immediately by greatly diminished loss of strength and atrophy of his left arm, followed immediately by his left leg. But, we were at the ALS clinic today, did a video swallow study, did the whole eval, you guys know the drill, everyone sees you.. it is an all day thing, kind of like disneyland, only no fun. So, the doctor and the therapists all say that he is definately no worse than his last visit 6 weeks ago. He finally has either reached a plateau, or the lithium (hoping for the lithium) is working.
So, that is my experience to offer... everyone kept telling us that sometimes this wicked thing will just suddenly plateau, and for 6 wonderful weeks it seems to. He does have fasciculations on his right arm, but no loss of strength or movement. So, I hope that this gives you some hope... I know everytime someone told me about it possibly slowing down and their experience with that I would just pray that it would happen for my husband also... and I also pray this for your mother in law...
Andrea - wife of Pals Jim.

[Jeannie]

Andrea,
thank you for your encouragment. This disease is just horrific. My MIL drs aren't for some reason on board with the lithium and I have no idea why. I am hoping for a plateu like your husband. She really is having a tough go of it. Now that the nice weather is here her allergies are making her breathing even worse. AHHHHHH
Thank you for offering some glimmer of hope
God bless you and your husband.
In friendship
Jeannie