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Tanya

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Joined
Oct 12, 2008
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11
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Loved one DX
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Kansas
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Weir
I have been reading the posts on the website to possibly find some answers to my sister in laws diagnosis. She was told two weeks ago Monday. I realized that you all seem to be willing to answer questions that I may have. I have always been the "studier" in the family and quite frankly didn't understand the significance of her diagnosis. I have to admit that the more I look, the more worried that I am becoming. Right now I don't know what to ask, but, I feel like the questions are right there. I would appreciate any help and any patience with this because I am quite confused and a little scared of all this. I'm trying to let her cry and be hopeful at the same time, but, I really don't know myself what to do. All the doctors seem to be throwing things at her and advice is coming in from everywhere. Her and I have always been close and honest with each other (we've been married to brothers for over 12 years), but, I'm lost on this. Like her, I'm not asking for sympathy, just a few answers. It looks like you all are close and open with each other and I would be willing to help anyone that could help us. Thank You, Tanya
 

CindyM

Moderator emeritus
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3,543
Reason
Learn about ALS
Country
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New England
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Welcome to the forum, Tanya. I am sorry to hear about your SIL. This site has a lot of information and folks are very supportive. If you have specific questions, try the search feature on this forum, or just ask. There is no topic that we have not discussed at one time or another. Cordially, Cindy
 

Tanya

Member
Joined
Oct 12, 2008
Messages
11
Reason
Loved one DX
Country
US
State
Kansas
City
Weir
I know that this may be a stupid question, but, what is bulbar pulsey? SIL is on a drug for one month and then going to find out what kind of ALS she has. She has slurred speech and weakness on her left side and doctors first thought that she had stroke. She is having trouble buttoning her jeans, etc. She had no symptoms as of May of this year and over the summer, the change is unreal. Should I expect things to continue on as fast as it has. They are also talking about putting her in a clinical study. She is only in her forties and soooo energetic.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Tanya ... bulbar palsy is just a name for the collection of symptoms your SIL has. Palsy means weakness, and "bulbar" indicates the part of the brain that is affected, which used to be called the "bulb." This part of the brain controls speech, swallowing, breathing, and also emotional expression.

So "bulbar palsy" means there is a weakness in a specific part of the brain, but it doesn't tell what could be causing it. "Bulbar palsy" appears in a number of different diseases. One thing to note, your SIL's emotions could get out of whack .... she could get weepy, anxious or laugh hysterically at the "wrong" things. Don't worry about these emotional outbursts. They are part of bulbar palsy, and her doctors will be able to control them with meds.

I'm so glad your SIL has you there for support. Any neuro disease is scary, but there are ways to control the symptoms. Everyone on this forum will be pulling for you. Send us any question you have, and we'll try to help.

Hang in there,
BethU
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Welcome Tanya,
Yes, you will find tons of support here for both you and your sil. Beth gave a wonderful description of bulbar onset. That is also what I have. My speech is slurred, and I have the crying/laughing thing from time to time, but that's about it now for 4 months.
Let her lean on you and talk when she's ready, and please know that this forum will help you both as much as we can,
Keep the faith,
brenda
 

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
Hi
I hate to have to read these posts, about just "finding out" and wondering what is going to happen, dont get me wrong I literally get on here first thing in the morning and the last thing I do before I go to sleep, It just saddens me so to hear of another. I will tell you that there is no time line, everyone is so different, I choose to call this not a "cookie cutter disease". Everyone progresses on different levels and then plateau's . I will tell you that I was so in denial. I just couldn't believe this was happening to "us". I just want you to know this is the BEST place for information, and MOSTLY there is a lot of hope here and last but not least HUMOR! You have to see the forest through the trees....Just hang in there and hang out here..............I will talk to you again I am sure everyone around here will tell you, I am a talker and do have a different sense of humor...........But hell you have to laugh to keep from crying............My husband loves westerns....so sometimes I will go in his room and act like I am having a shootout..........He just laughs with his eyes as he can no longer talk..........But you have to find some good in all of this HELL, and know that we are all just passing through, and I feel that God sometimes takes certain people that he knows are strong enough to endure this hell and make the rest of us look at life alot different , I sometimes tell my Freddie when he wonders what he did wrong to be punished like this. I tell him that he was the chosen, because of his strength for the rest of us to learn something. He will often ask me if he is going to heaven, I always assure him YES, he is making the way here on earth for all of us to see............Only the strong will sometimes go through the worst for the best for all of us....
I usually don't go on and push my religious beliefs on anyone but for me God is what gets me through this living hell, this disease does effect ALL involved.

Well take care, I gotta go before I start a novel............lol.......
Your Friend,netty
 

katekath

Distinguished member
Joined
Oct 2, 2008
Messages
148
Reason
CALS
Country
SGP
State
SG
City
SG
I tell him that he was the chosen, because of his strength for the rest of us to learn something. He will often ask me if he is going to heaven, I always assure him YES, he is making the way here on earth for all of us to see............Only the strong will sometimes go through the worst for the best for all of us....

Netty, thank you for saying that. I just need a little boost after seeing my mum in the hospital yesterday night. The nursing care is terrible. She has pneumonia, but thank God, it is subsiding. She can't sleep due to the shouting from the other patients at night, but was very responsive yesterday. Still, it hurts so bad to see her going through this. So, thank you for saying that. :)

Take care,
Wan
 

comfortermom

New member
Joined
Oct 16, 2008
Messages
6
Reason
CALS
Country
US
State
IN
City
NewCastle
I have been reading the posts on the website to possibly find some answers to my sister in laws diagnosis. She was told two weeks ago Monday. I realized that you all seem to be willing to answer questions that I may have. I have always been the "studier" in the family and quite frankly didn't understand the significance of her diagnosis. I have to admit that the more I look, the more worried that I am becoming. Right now I don't know what to ask, but, I feel like the questions are right there. I would appreciate any help and any patience with this because I am quite confused and a little scared of all this. I'm trying to let her cry and be hopeful at the same time, but, I really don't know myself what to do. All the doctors seem to be throwing things at her and advice is coming in from everywhere. Her and I have always been close and honest with each other (we've been married to brothers for over 12 years), but, I'm lost on this. Like her, I'm not asking for sympathy, just a few answers. It looks like you all are close and open with each other and I would be willing to help anyone that could help us. Thank You, Tanya

Hi Tanya. I know what you're going thru. I went thru the same feelings when my daughter was daignosed at the age of 29. You don't know any answers, and don't even know what questions to ask and it's really scarey. My daughter is now 41. Don't let those predictions of "how long she has" get to you. The thing about ALS is, everyone is different. It affects everyone differently. Everyone progresses at a different rate. NOBODY knows. Especially the doctors. She needs to get on the computer and get in touch with others with the disease. That's been the lifesaver for my daughter. Get in touch with me offline, and I'll help her get in touch with my daughter, who can link her with all the important connections.

And regarding you: take it one day at a time. God will give you strength to handle today. It does no good to worry about tomorrow and what might happen. Usually the things we worry don't work out that way anyway. LIve for today. Love today. Be strong today. Let tomorrow take care of tomorrow.
 
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