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Connie M

New member
Joined
Nov 7, 2007
Messages
1
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
OH
City
Cincinnati
My sister, a 45 yrs old, was just diagnosed with Bulbar Palsay ALS two weeks ago after having symptoms of slurred speech, difficulty swallowing, and weakness in her thumb and arm. In less than two weeks she can barely swallow and is eating only liquids - Boost - and mushy baby food type foods and can barely talk. It seems to be progressing very rapidly. We are clueless on ALS! Can anyone tell me what we should do first? She definitely needs to find a good support group. DOes anyone know of any inthe Cincinnati, Ohio area? Any info would be greatly appreciate. She has two small children, ages 2-1/2 & 6 and her husband is devastated also. Help? Suggestions?
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Connie,

i am so very sorry your sister has ALS. You need to get in touch with the ALS Assoc. I'm not sure, but the closest support group may be out of KY. If you go to the KY ALSA site and look up support group they have a contact link for northern KY.

It really breaks my heart when someone so young gets ALS and has children to boot. I know this is just a nightmare for her and her husband. I'm sure they are in shock as are you. It will take a while to move beyond the initial realization, but y'all will get through it with support from friends and family. It will be tough...

Is your sister going to an ALS Clinic? They should have reps from both ALSA and MDA that can help you with information. The ALSA has several publications regarding all aspects of the disease and quality of life issues.

You are great for trying to help your sister! Hang in there and feel free to come here as often as you like. We are all in this together.

www.alsa.org/
 

JenniLee

Active member
Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
Help is all around

Dear Connie;

What a great sister u are to get right on it --finding help. I'm 38 w/ ALS bulbar diagnosed 2/2007. Have 2 small girls; 6 & 7.

My suggestion; contact the MDA and get registered w/ them--they can help in so many ways.

Your sister's neuro should have referred her to specialists in other areas; most importantly, right now, a GI doc.

Also speech pathologist so she can obtain speech device; MDA will give $2000 towards a device. So if she has ins. - it may cost her nothing.
Cotact Social Security- she immediately qualifies for SSDI & medicare. Once app is completed & doc reports received, she'll get income ASAP (if she has worked) and a small amount F/B/O her kids.

Hope this helps.
Hugs, Jen

P.S. (an affirmation I just found)

"EVERY CELL, NERVE, TISSUE, AND ORGAN IS NOW BEING MADE WHOLE, PURE AND PERFECT. ,Y WHOLE BODY IS BEING RESTORED TO HEALTH AND HARMONY."
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Connie. There is a support group in Cincinnati. The number can be found at the www.alsa.org website and click on the In your Community tab and then on support groups and then on the Ohio tab in the state drop down menu. Hope this helps and welcome.
AL.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
Hi Connie,

Well, were all sorry your here. We wish we never had to meet you, but, there is a great support group here with wondeful people.

This sounds as if it's moving really fast. If it already has not, it will turn your lives for a good twist.

YOu need to get with an ALS Clinic, the MDA and you need to call the local ALS Association. You need to tell these people how fast this has progressed.

Things will happen very quickly and the family will need more support than you ever could have imagined.

God Bless you for being there.

Please ask any questions.

Rgds,

Jamie
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Connie and welcome to the fourm. You are doing the righthting to try to get information for your sister. She is lucky she has you! Feel free to ask anything on this forum. We have a lot of members and a lot of combined experience. Regards, Cindy
 
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