New to forum and to disease

Nikki J · 03-22-2012, 07:26 PM

My sister was just diagnosed today. I am devastated! I want to know how to help her stay as well as possible for as long as possible. She has a very smart 9 year old daughter. she is wondering how/what to tell her.... oh so many questions, so many issues... what do you all wish you had known what are you glad you did what do you wish you had done differently?
Thank you all
Wishing you all peace and comfort
Nikki

susanf · 03-22-2012, 08:18 PM

Welcome. This forum has been a lifeline for many of us. It's a wealth of knowledge and many wonderful people. Many of us have kids ttoo. I have a 12 year old daughter. A very nice person told me do not let the disease define who you are. I think of my glass half full.

notgivnup · 03-22-2012, 08:23 PM

So sorry about your sisters diagnosis Nikki. Just be there for her. We here are all here for each other and you will find the support you and her need, also lots of info. Ask her to join the forum also, she will get to know loving supportive people in the same situation with lots of great advise. Welcome to the family. Live one day at a time to the fullest!

momap53 · 03-23-2012, 08:34 AM

Hi Nikki,
I'm so sorry to learn of your sister's diagnosis. It's wonderful that she has such a loving and supportive sister.
You'll find a lot of information here from these very generous PALS and CALS.
You can learn to do searches in the archives of the forum on topics that are of interest to you and look for tags at the bottom of a thread for links to others that are similar. Many members joined in on one called "telling the kids"

Help your sister be proactive in making changes and getting equipment on hand before it's critical. Avoid falls at all costs!

Toto's Dorothy · 03-23-2012, 09:20 AM

Nikki,

I'm so sorry of your sisters diagnosis. When she is able to, have her sign up too. You have found the best place to be. These are the most knowledgeeable and caring people I have ever met.

Questions, qukstions and more questions. Please don't be afraid to ask. Someone here has probably been through it and will have the remedy.

Oh, and I have many children and 2 that are 11 and 13.

Sorry that you and your sister have joined a family nobody wants to be a part of,

Georgia Peach · 03-23-2012, 12:34 PM

Travel, walk, eat out often, take time to smell the flowers, help her enjoy life with the family.... We thought we would have more time. Never enough time and the disease marches on. Get help early, file for disability, record her voice or video tape.

Again I thought I would have more time to do all of this for my husband. Good Luck and thank goodness that you are in her life. Our church family and VA have been the God send for us. AND she must have an advocate to help navigate what needs to be done before she needs it. Everyone who experiences ALS has a rough journey. Thanks for posting.

Nikki J · 03-23-2012, 02:08 PM

Thank you all. she is being so brave I don't know how she and all of you can do it...
Bless you all
Nikki

genavin · 03-23-2012, 04:52 PM

Nikki,

So sorry for you and your sister. My thoughts are with you and your family.

My husband was diagnosed in September 2010, and we have three kids (currently 14, 12 and eight). First, we didn't rush telling them until we had time to process what was happening. Once we did, we took some very good advice from various people and told them the basics (Dad is sick with a disease that affects his nerves and muscles. He will continue to get weaker. There is no cure.) Then, we let them ask questions. Over time, they have asked more when they were ready to hear more. They are now all very clear on everything, including his prognosis. We always answer their questions honestly and directly.

cubcake · 03-23-2012, 05:24 PM

I know someone said it before, but my biggest regret as of now is not having recordings of his voice. You'll want to hear her say I Love You everytime you need it. She'll want that, too.

Nikki J · 03-25-2012, 10:26 AM

thank you all. the voice thing is a great idea.
love
Nikki

Ms. Pie · 03-25-2012, 01:05 PM

Welcome to the forum Nikky! I'm so sorry for your sister's diagnosis. I have 6 sisters that I'm strong for and in turn, they're strong for me. We do this together. Let us know if you have any questions.

panguinjen · 03-29-2012, 03:49 PM

Nikki, I'm sorry to hear about your sister. My husband can no longer speak and I miss his voice more than anything so those that said to record her voice are right. Live each day as fully as you can. My prayers are with you all.