bullbar?

[john.rt]

hi,to all of you guys, I have a problem with my friend ,he feels very sad And anxiety, I love him very much, I started feeling anxiety about him, I am afraid he decided to Suicide, his problem is one year 3months ago, he started feeling abnormal symptoms and went to neurons all over usa , Neurologists all diagnosed him with bulbar onset but he denied the diagnosed because he started the symptoms one year 3months ago, and his limb still fully Mobil, he said bulbar progress so fast to limb and iam still Mobil, that why he denied the diagnosed,his symptoms are:
1-excessive yawing
2-excessive saliva
3-slurred speech it gets worse when he is stressed or mad or laughing
4-Swallowe problem ,but still can drink, eat all types of food, slight chewing trouble but when he Swallowed a pill ,her his problem starts
5- When he eats food stick in his mouth.
6-feels from time to time a little dizzy
7-mobility is very good for for a year and a half almost, this is the reason he denied the diagnosed,he just cant believe, one year 3months he still function he said I feel I will be good for the rest of my life ,but his psychology said the opposite
8-his emg/nvc were a little bit dirty.
That’s my problem, he is very kind & polite, I feel sorry for him, does any of you there has met this type of bulbar,
Any information would be appreciated

 

[joelc]

What he is experiencing is very possible. Everyone is different on the rate they progress. He, has ALS, bulbar onset. Sorry, but I believe the neuros are correct, but he is blessed with slow progression.

 

[rgilstrap]

my husband has agessive bulbar

hi,to all of you guys, I have a problem with my friend ,he feels very sad And anxiety, I love him very much, I started feeling anxiety about him, I am afraid he decided to Suicide, his problem is one year 3months ago, he started feeling abnormal symptoms and went to neurons all over usa , Neurologists all diagnosed him with bulbar onset but he denied the diagnosed because he started the symptoms one year 3months ago, and his limb still fully Mobil, he said bulbar progress so fast to limb and iam still Mobil, that why he denied the diagnosed,his symptoms are:
1-excessive yawing
2-excessive saliva
3-slurred speech it gets worse when he is stressed or mad or laughing
4-Swallowe problem ,but still can drink, eat all types of food, slight chewing trouble but when he Swallowed a pill ,her his problem starts
5- When he eats food stick in his mouth.
6-feels from time to time a little dizzy
7-mobility is very good for for a year and a half almost, this is the reason he denied the diagnosed,he just cant believe, one year 3months he still function he said I feel I will be good for the rest of my life ,but his psychology said the opposite
8-his emg/nvc were a little bit dirty.
That’s my problem, he is very kind & polite, I feel sorry for him, does any of you there has met this type of bulbar,
Any information would be appreciated

he was diagnosed in sept of 08 it started with his speech was slurred like he was drunk. now he can only eat soups and mashed potatoes and stuff like insure or boost its a really fast moving als, one side of body he cant use and the other is real week.he cant talk at all now oly grunts its very sad to watch him waste away im sorry to hear about your friend

 

[Al]

John.rt it is quite common for bulbar onset patients to just have bulbar symptoms for a long time before getting limb progression. Your friend appears to be one of these people. It does sound like bulbar ALS but his appears to be slow progressing all round which is a good thing. We have had people here with bulbar symptoms longer than 6 years. It isn't all doom and gloom.

AL.

 

[t34gib]

I am a person with only Bulbar symptoms and I can trace them back to at least 3 years. My speech is slurred more now but I still eat, with slight difficulty chewing and swallowing is done very carefully. But I have absolutely no limb involvement. I have never hit the golf ball so well!fd My actual diagnosed is Progressive Bulbar Palsy, which in essence, is Bulbar onset, from what I understand. I am slow progression and hope it stays that way. But if not, then not. I will deal with all this one day at a time.
NancyS

 

[Al]

That's the kind of attitude we like to see Nancy.

AL.

 

[brooksea]

John.
So very nice of you to be concerned about your friend.

My husband has had bulbar symptoms that we can trace since 2005. He still talks, but only people that know him can generally understand. he also had limb onset about the same time or even before, it's hard to tell. he still walks/drives/talks with help (cards). Pretty good for almost 4 full years of symptoms! His fine motor skills are shot, but he compensates when he can.

My husband still does stuff with our soon to be 9 yr old son. The only thing it requires is energy and that is what pALS lack. So, we supplement with Boost or icecream shakes, etc...

Surely your friend has something to look forward to? What could it be?

I will tell you the story that others have already heard, about my husband flying back from a business meeting shortly after diagnosed. He would slur his words and explained to the man next him on the plane that he had Lou Gehrig's. Just so happened that man's brother died of bulbar onset ALS. My husband had no idea what he was talking about, as the neuro had not discussed "types of onset" with him. This "kind" gentleman told my husband that bulbar onset was the worst kind to get and the fastest and that he would only live 2 years! My husband came home a wreck thanks to this man!

Happy to say my husband is still here! Not always happy due to emotional lability, but happy none the less.

 

[BarryG]

John, every one of your points is exactly the same as my experience and symptoms. I started to slur my words in July of 2007 and was diagnosed with bulbar onset in January of 2008. Now my speech and swallowing are pretty much gone, almost nobody can understand me when I try to talk and eating is much more trouble than it's worth. So far I am still walking although I tire quickly and am a little wobbly and have some problems with my right hand.

I know that we have discussed this before but it bears repeating often, don't believe the statistics! They are outdated and mean nothing to us as individuals. I want to all of us to be what the statisticians call outliers, the more that there are of us that are, the sooner the doctors will change the "average" to reflect the new normal.

I hope that you can convince your friend because I want him to beat the odds too. To do this he will have to get with the program because he WILL need help eating and talking.

Thanks for caring about your friend,

Barry

 

[john.rt]

thanks guys for the reply,i will show him this