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ALS_Daughter

New member
Joined
Jul 30, 2007
Messages
6
Reason
PALS
Country
US
State
MA
City
Quincy
Ok, I need to go to bed, so I'll keep this brief.

My Dad has MS, for the past 30 years. He is a paraplegic, and bed-bound, mostly. He nearly died 3 weeks ago, from a severe kidney infection (MRSA), 4 days before my wedding. I swear that's what kept him going, as when he came around from the infection and the drugs, he said "i gotta get out of here! My Daughter just got married!" :)

But, a little over two weeks ago, the day before my honeymoon, my Mom was diagnosed with ALS. Bulbar, but her symptoms are progressing pretty slowly, in the ALS clinic Director's opinion. Started about 2 years ago, voice first. Her most severe symptoms, on the ALS Diagnostic Scale, are with voice and swallowing. She has fine motor skill problems, like buttons, etc, but she can walk and drive and do housework fine. So that's one good thing. He prescribed her Rilutek and Amytriptiline...Thankfully, her Ins will cover the Rilutek.


At this point, we're still kinda in shock. I'm 100 miles away. My little brother (age 25) is their caretaker when he's not at work. My Dad has a VNA. I worry about my Brother though...

So, hello new friends. Sorry to meet you, but at the same time, I've read this forum through and through and I'm happy to be here. :)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi ALS daughter. I am glad you found this little corner of the internet but sorry for the reason you have to be here. It must be frustrating to have parents who need you so much and to be so far away. Try not to let it get you down, though. As time goes on you will find ways to help from afar!

Since both of your parents have serious illnesses, you might do a little research to find out what is available for each of them in their region. Emailing the Ms and ALS clinics for their advice will take a load off brother, for starters. For example, a personal care attendant (if he qualifies) for Dad can help lighten the load for everyone. I'm thinking in that sort of direction. Get help from whatever source is available because regardless of the patient being helped, the whole family benefits. Good luck and keep us informed! Cindy
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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Other
Country
HM
Congrats on your marriage!

Please feel free to come to this forum for anything you may have questions about.

Sorry you had to find us. Hopefully we can help support you thru this process with your Mom. I know it must be hard to be feeling wonderful because you just got married and at the same time down due to your Mom's diagnosed.

Hang in there. It is going to be stressful for your younger brother, so please try to help him thru it. He is so young.
 

ccox

Active member
Joined
May 30, 2007
Messages
71
Country
US
State
TX
City
austin
Goodness, what an enormous amount of stress you must be under. I'm fairly new here too, but everyone seems very helpful and nice. My mom was diagnosed in June with upper and lower forms of ALS (speech, swallowing, walking).
Has your mom seen an ALS specialist in your area?
Carla
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
ALS DAUGHTER, I'M SO SORRY YOU HAVE TO HEAR BAD NEWS DURING THE HAPPIEST TIME OF YOUR I WAS A CA. DAUGHTER AND MAIN CAREGIVER AT A VERY EARY AGE ALSO. I WILL SAY THAT IT MADE DYING A REALITY TO ME. nOW I HAVE ALS AND MY YOUNG DAUGHTERS HELP ME. yOUR LOVE AND CARE IS THE BEST MEDICINE FOR YOUR PARENTS. YOU AND YOUR BROTHER PULL TOGETHER AND I PROMISE YOU WILL GET THOUGH THIS ASK GOD TO HELP YOU THROUGH THIS AND GIVE YOU PEACE HE WILL HELP YOU IN THIS TIME OF NEED. MAY GOD BLESS YOU AND YOUR FAMILY. JANF
 
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