yet another new diagnosis

I'm Kim, I guess today I am looking for tools to help me deal with all the attention froms family and friends in a positive way. I so want to do this gracefully and it's not easy. Why am I fighting with my husband and how do I turn this around beefore it is too late?

Hi Kim,
Welcome to forum.... We do understand where you are... First, breathe...the novelty with family and friends will wear off and things will calm down. You and your husband have some decisions to make, but again, breathe. We don't know where you are in terms of your condition so specific advice is hard, but register with MDA and ALS Association, sign up for SSDI with social security (automatic approval but a 5 month wait). Are you involved with an ALS clinic? Ask, ask, ask the good people here... This site has been a lifesaver for me!

Jen

Welcome aboard. You and your family are grieving. It will take time.

Please register at the CDC and take their surveys to assist in research.

As Jen stated, take it a day at a time. At first I was so worried about my husband, I forgot to enjoy what we have today. . We still have time to enjoy traveling, music and our family. This is a great forum with lots of knowledge and support.

Welcome Kim,

There is plenty of life after diagnosis - even if you don't see it right now. Give yourself a break.
And as others have said - take it one day at the time. The shock fog will lift. I promise.

For me, the elixir was/is prayer. And this forum. The people here are awesome.

Hope you come back Kim. You're not alone.

sorry that you had to find us but so glad you did. reaching out to tohers who r going thru the same thing helps. prayers and hugs to you and your family

Hi Kim
I was just diagnosed last week and understand your concerns. Read these forums, there is great info you can pull from. I'm just taking one day at a time & planning visits with family & friends. I have my first ALS clinic on the 17th & hope to get more info then. Sign up for your local ALS chapter. Go to a specialized ALS clinic for your care. Then go to a support meeting. Hopefully this will help your husband. He is probably in denial/anger stage. The life you had planned has a different path now. It will take some time & patience to make your new life plan. I have you in my thoughts & prayers. We are here for you.

Hi Kim, so welcome to the forum. I was diagnosed in January and still have not adjusted to what is happening to me, some days better than others, but I surely do appreciate my kids and grand kids so much more, it's like our bond has become so much stronger then every before. It is very frustrating for the person who has it and for the family probably even more, cause they don't know what to do, and it is upsetting for them also. Try to enjoy each day and as they say, take time to smell the roses. God Bless

thanks Jen,

I am with UAMS in arkansas. Thanks for the heads up on the automatic approval. I guess I can find away to pay for my own insurance. My company stops paying for it after 12 weeks. Thanks to everyone for all the warm welcomes and I will go do some research on the previous threads. Best wishes to all

Sorry for your diagnosis, it really is a horrible moment... and then learning how to tell people, especially without crying. I still cry sometimes, especially when I think of my kids. That said, it does get easier with time and you become used to your new normal. Great advice here, try to stay ahead of what's happening, so if you need some equipment, you;ll have it already. Good luck and check out the different older posts, there's a wealth of info on this site.

Hi Kim, I am sorry for your diagnosis but glad you found us. I still have my sad moments and cry, especially as Helen was saying...I cry alot when I think of my kids.

take time to read posts on this site. use the search bar to help answer questions. please attend support group meetings, they will become a new batch of good friends maybe some printed material for your husband to studywill offer unlimited support, go to a multi discipline clinic regularly and ask questions of all the reps, breathing exercise, balance exercise, range of motion exercise, and the list goes on, once you settle in its not that overwhelming. maybe some printed materal for your husband to study to help prepare home for this journey

kimmyk said:

thanks Jen,

I am with UAMS in arkansas. Thanks for the heads up on the automatic approval. I guess I can find away to pay for my own insurance. My company stops paying for it after 12 weeks. Thanks to everyone for all the warm welcomes and I will go do some research on the previous threads. Best wishes to all

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You may find that the ALS assoc will help with any supplies.

U can check into Medicaid if necessary, too. Medicare starts the same time the checks do, no two urartians wait, which helps.

Get whatever is anticipated while you still have the insurance. Be sure to apply for the SSDI sooner rather than later if you're not going to continue to work.

When I applied, I hand delivered every record and file personally. That saves time, too.