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janicebuf

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hi everyone, i don't know if you remember me but my brother was the one who had the 'bulbar' sympotoms a few months ago. i wrote about him and you all were so helpful.

we just found out for sure he does have als. he is 46 years old and i don't know what to say to him! i am so disgusted with this disease and wish they'd find a cure. we spend millions to fight a needless war and yet can't find help for als. obviously i am angry as we have lost more than 20 family members at this point, all in their prime. he will be going to syracuse and hopefully get in the clinical trial of ceftriaxone (sp?) the dr. thinks it may be slower progressing than typical in my family. how the heck does he know that? he noticed symptoms in april and right now he can eat ok and his speech is somewhat warbled but it has gotten worse for sure since april. any advice anyone? thanks.
 

TBear

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Hi Janice:

Sorry about your brother. I guess it's the familial form. I think, for you right now, that the best thing you can do is look at the Manual for People Living with ALS that is available on the Canadian ALS Society web page (top right hand of this page). Although it's geared toward patient care in Canada using Canadian health sources, most of the stuff should be useful to you as a caregiver and/or friend.
Try that first and then ask questions as you need. We're here to help in any way we can and we don't bite... maybe nibble a bit but nothing dirty.
Good Luck

T.
 

janicebuf

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to tbear

thanks t! yes, i know it's familial. howver, i lost my sister 4 years ago to breast cancer at age 41. this just sucks no matter what way you look at it.
 

Al

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Hi Janice. If you stick around here long enough you will come to realize that no matter how big a train wreck your life looks right now, someone is going to come along with a bigger one. Not to minimize your pain but you will find solace here and some good support when you need it. As we usually say , try to look at the positive things and don't lose your sense of humor. I hope you noticed that I spelled humour the American way to make you feel more at home.
 

TBear

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... you're a good man Al!

T.
 

Al

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Thanks. Is the weather bad up there? You have been on here as much today as I have been and I don't work. Oh by the way you weren't being sarcastic were you?
 

janicebuf

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thanks al

you are all so very kind. i am sorry if i sound bitter but i am. i've lost so many people to this disease it's ridiculous! believe it or not, i do have a sense of humour~notice the spelling:) it's just that i am very, very angry right now! thanks again, janice
 

TBear

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Janice... it's okay to be angry... so long as you don't pick on me! Thank you for for your concession on spelling... now the moderator won' t be confused!

Al... I was NOT being sarcastic... this time. I was doing a lot of research online today at work and managed to keep my browser open. It's quiet at the hangar right now so I have no interruptions... except for the guys from the military who came in looking for stuff. They had a grounded Cormorant on the ramp here at YQA and I ended up helping them out for awhile with some supplies and a small hand. Huge helicopter... has 3 engines. Biggest I've flown is a 204. It makes that look like a flea.

T.
 

TBear

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... and oh yes the weather was fine all day. It was starting to cloud over this afternoon and it looked like it might rain, but the radar didn't show anything close.

T.
 

Granny

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Hi Janice, I do remember your posts from before.
And who says men are not sensitive! These two have given you some good advice, Janice.
I can't imagine what you feel like, having gone through this so many times in your family. I can understand your being angry. But, you also sound strong, and I know you will be there to help your family with this. We are here anytime you want to ask questions or vent, or show your humor/humour.
You will be in my prayers.
Leah (Granny)
 

Al

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Hey Tbear isn't a Cormorant just a Sea King with newer enjines? I didn't really think you were being sarcastic. I know you are above that.
Janice I can't even imagine how you feel. I have ALS myself and I am the first in my family. I don't pray to God to help me but I pray that I am not the first in the chain. I have 2 children and 1 new beautiful grandaughter. I hope that I won't pass it on. Hope is the only thing that is a constant with this disease. Hope for treatment. Hope for a cure and if all else fails hope that there really is a God and a heaven.
 

janicebuf

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Leah

hi leah, thanks for your words of encouragement...i do have a few ?

don't you have bulbar? if so, how has that progressed? do you have fasiculations? where? sorry to get so personal, i am just trying to learn as i go. thanks janice
 

Granny

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Hi Janice,
I don't mind in the least sharing my journey with ALS. We all learn each other, that is the great thing about this forum.
Yes, I do have bulbar. I was diagnosed in April of 2003 and had symptoms beginning in fall of 2002 with slurred speech.
The only fasiculations I have had were in my tongue. That does not happen now, but my tongue is useless. My speech is gone, the volume is fine, but I cannot form the words. I have trouble swallowing and only eat pureed foods, shakes and supplement it with tube feeding once a day.
I have a lot of trouble with excess saliva.
So far my arms and legs are still strong. The Physio visited recently with a set of exercises for me , and when she tested my strengh and flexibility, said I was as strong or stronger than most "normal" people. Again, I think this is just an example of how everyone with ALS has different symptoms, and progresses at a different rate.
Thanks Janice for being here and for sharing with us.
 
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