ECpara new thread

[sadiemae]

I moved this here so you have your own thread

We have our fingers crossed but my husband went on Rilutek the day he was diagnosed (Feb.7) and has had very little progression of his Bulbar Onset ALS. His speech is maybe a little worse but, he still eats a lot (is selective with food that is easy to chew and swallow), has gained a few pounds, and no limb involvement yet. He's active; golfs, mows the lawn, drives, and types a lot. The only side effect so far is fatigue. I pray everyday he continues with this very slow progression. Has anyone else experienced this at the beginning? I'd say he's had mild symptoms of ALS since April last year until his diagnosis in Feb. this year. Will he suddenly start losing his muscles or can it still continue slowly for a long time? I always read how Bulbar is faster, could he be lucky enough to last a long time or am I being premature in my hopes?

 

[Anja]

I hope it will stay this way dear sasimae! There is no general way it goes, you both enjoy all that is still possible and live by the moment okay! Hugs to both of you!

 

[Toto's Dorothy]

EC,
I was a little confused by the posting. And then I saw your name at the bottom. Unfortunately, I can't answer your questions or calm your fears. I do not have Bulbar onset. But even so, each person has their own road with this disease. Just ask questions even if you think them minute. Someone here, either a PALS or CALS will be able to help you.

I'm sorry to have to welcome you to our family, but be glad to know we will support you every step of the way.

 

[kiwisally]

EC, First everyone is different, please remember that. I started having bulbar symptoms (only) well over a year ago. I was told (dia.) 7/2011. I do not take the medication your husband is on, never have. My neuro expected it to be fast. Thankfully, I still have no involvement except bulbar. I eat a VERY soft diet very slowly and do not choke. I can still drink thin liquids, painfully slowly with no choking. On occasion I can take pills with water mostly I can't, I don't choke I just can't swallow well enough. I use a TTS program on a netbook. Very few people can understand my speech and then only one or two words at a time with hand gestures by people I know well. I have had no chest infections but numerous sinus ones. I sleep with head (from waist) raised to at about a 35 degree angle and often sleep 4-5 hours at a stretch without waking, 8 - 9 hours a night. I do not nap but I have overwhelming fatigue, particularly after a meal or drinking and I spend a good bit of time in bed with feet raised. I hope this helps you in some way but please remember, no two people are the same.

 

[DeansWife]

EC - my Dean was diagnosed with Bulbar onset in Aug 11 but in retrospect, we believe it actually began back in 2008/2009. When he was diagnosed, his speech was very hard to understand but he could still eat with not a lot of choking. The choking really started bad around Nov/Dec 11. It has progressively gotten worse. He finally consented to getting a Peg tube just recently. Now I know he can get the calories he needs to keep his body weight up. This is important, so I'm told. Everything I've read says that no two people progress the same nor start the same. I'm sorry that you had to join this family! I don't wish it on anyone but welcome. Ask questions, research and read.

 

[panguinjen]

EC,
My husband sounds like yours... Every one's rate of progression is different. We started this journey in May 2010 with speech difficulties, he was diagnosed in Aug. 2011. Up until March of this year he cleaned, cooked, shopped and ran the house (he's retired, I'm not). His speech is unintelligible now and he uses an iPad, dynavox and his phone to communicate. He got a g-tube in march and has put on a couple of pounds. He's frequently tired and has diminished lung capacity. His attitude and sense of humor are great and he never complains....I'm sorry you're on this road!

Jen