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Mary Ellen

New member
Joined
Feb 4, 2008
Messages
1
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
Illinois
City
Belleville
Hello. My sister (age 52) was diagnosed with MND last week. My eyes ache and my face hurts from crying. The progression of her disease is alarming-- from minor symptoms in June mimicing other possible diagnoses to significant muscle atrophy in hands and weakness in legs and the undeniable truth. Now I must be strong for her and I think I might find it here. Thank you for listening.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome Mary Ellen. Sorry for the reason you are here. Feel free to ask questions or vent. We truly understand what you are going through.
AL.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Sorry to hear of your sister's diagnosed. Please search the threads for lithium. Latest hope for PALS. Be strong. With knowledge comes some peace - at least for me.

Sharonca
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hi Mary Ellen,

Very sorry you had to seek this forum out. You will find lots of support here.

Is your sister going to an ALS Clinic? Sharonca mentioned Lithium. Italian researchers have released their publication regarding their trial on PALS with Lithium.

http://www.pnas.org/cgi/reprint/0708022105v1.pdf

This offers some hope for all PALS. You may want to pass this info on to your sister and her physician.

Good Luck!
 

Rae Ellis

New member
Joined
Feb 5, 2008
Messages
6
Reason
PALS
Diagnosis
01/1997
Country
US
State
Arizona
City
Surprise
Stay Up-beat!

Hello. My sister (age 52) was diagnosed with MND last week. My eyes ache and my face hurts from crying. The progression of her disease is alarming-- from minor symptoms in June mimicing other possible diagnoses to significant muscle atrophy in hands and weakness in legs and the undeniable truth. Now I must be strong for her and I think I might find it here. Thank you for listening.

Mary Ellen...My husband was diagnosed with PMA (Lower MND) in 1997 and we thought our life had ended. After the initial shock, we have tried to stay very positive. Take one day at a time and learn to deal with the obstacles of that day, week or month. Try not to look ahead at "what might happen." I think something that has helped us, is to be prepared before we needed something, i.e., ramps, high toilet seats, canes, walkers and now he is in a motorized wheelchair....a true blessing. The wheelchair accessible van is worth it's weight in gold. We have noticed that he seems to stablize for about six months or so and then has some subtle decline. This is a devastating disease but it could be worse and is for many, many people. Jim can still stand to urinate and shower and it has been ten years. Hopefully your sister will be receptive to using a cane, arm crutches and eventually a wheelchair. My husband fought those for a long time and suffered many falls that broke bones and bruised him. When he falls, it assaults his entire body and we see a decline in his mobility that he doesn't get back. Try to keep her from falling. I wish you and your sister good luck and I hope this helped a bit.
 

MarciaA

Distinguished member
Joined
Mar 13, 2006
Messages
116
Reason
PALS
Country
US
State
MN
City
Owatonna
Mary Ellen,

Welcome to the best group of supportive people on the planet! As others have said, feel free to vent, ask questions, whatever. My sister was diagnosed two years ago and she is now 53. ALS is a horrible disease but luckily we don't need to go through it alone. Rae Ellis mentioned a lot of accomodations...wheelchair, braces, walker, etc. My sister balked at some in the beginning, but embraced them all as they came because they all gave her that extra edge that she thought that she had lost forever. Hang in there and please know that we're all here for you!

Marcia
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Mary Ellen,

God bless your sister, you and the rest of the family. My heart goes out to you. I lost my youngest sister instantly to a car accident - she was 22. (1976) I lost my oldest sister in Dec 1999, after 12 years of fighting cancer. A sister who is your friend is like no other relationship and I am so very sorry you have to go through this. It does sound like her progression is fast and I totally agree with all the suggestions that she get the accommodations as soon as possible. I was a consultant for kids and a big part of my job was accommodations that help the quality and quanity of life.

However, the other thing is time. You have some - cherish it for both of you. You are mourning now, but also use every opportunity to learn from her and to love her. You will not regret one moment you spend with her and let her open up to you. God Bless you so much and give you strength and Peace. Sincerely, Peg
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
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