My Sister

[Mary Ellen]

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]

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]

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]

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]

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]

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]

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]

Hi Mary Ellen,


I just found this site for a free on line magazine about ALS called "Hope." It may have been mentioned before but I just saw it. I thought all of the articles were helpful, but the question and answer were really good and I think would be helpful to you.

http://www.alsa.org/files/cms/Resou...N=7dc133-6ef4e95a-ca6c-455c-a5a9-d4aabb2eec60


Best Wishes, Peg