New to this site! Overwhelmed !

[Lisa d]

Hi, my name is Lisa , my husband was diagnosed with als in August of 2013 . His situation is complicated by a previous spinal cord injury in 2007 that left him a quadriplegic! We were trying to cope with all the medical issues and changes and then in 2012 he started to have some speech problems and some strength decline in what he had intact from his previous injury! They finally diagnosed him and we couldn't wrap our heads around it! How much can he take! Well his speech has deteriorated. I can understand him but not always but others have a hard time. We have 3 teens and life is beyond hard! I have read some posts and it's nice to know I'm not alone!

 

[cheerleader]

Oh, Lisa, know you will find strength, understanding, and support here. So sorry life is tough- 3 teens at a time is hard enough- and now this! Your plate is very full, my dear, but as I'm sure you've already discovered, one day at a time is the only way to stay sane. Hugs. Donna

 

[Lisa d]

Thanks Donna , one day at a time is the only way! Today was a very hard day but tomorrow will hopefully be better

 

[cheerleader]

Attitude is the key to everything! Hooray for you.

 

[Gembead]

Hi Lisa, welcome to this site, you will find a lot of information here and a place to share and vent if you need to. Sorry to hear of your husbands situation. One day at a time and take the offers of help as family and friends offer.
Love Gem

 

[Nuts]

Welcome, Lisa. Here you will find understanding and acceptance. In another thread you appologised for complaining--don't worry about that. Vent, complain, discuss--it's all ok here. I can't imagine dealing with this on top of already being a quadraplegic AND raising three teens. My heart goes out to you. How are the kids doing?

 

[gooseberry]

Welcome Lisa! This site will give you so much and in time you will give back. You can ask any question of this crowd, rant,rave, get moral support, you name it. People will help you anyway they can. Als is a crazy, unpredictable in many ways, destructive disease. It turns our lives upside down and puts you on a wild rollercoaster ride. Just remember, we are always here for you. It may not be the same person but someone will help you. Many hugs for you. Steph

P.s.We used to live in Ellicott City and Frederick, MD

 

[Lisa d]

Thank you everyone for all the kind words!I have felt so alone in this journey! It has been a long 7 years taking care of my husband ,kids , finances and everything else! We don't have any family help and it's hard to ask friends to help with my husband! He is so particular how he likes everything! I have been blessed to have some help during the week for about 25 hours but evenings, nights and weekends are all me! My kids help but I do not let them do transfers or personal care! I want them to still see my husband as dad! My kids are my sanity! They are my normal! My heart breaks for them to watch this decline! Friends and family don't understand how all encompassing caring for a very sick person can be!

 

[dalvin]

Welcome....

 

[WMS10]

I'm so sorry for your situation. Everytime I read one of these stories I want to drop everything and go help. Obviously not possible with my own responsibilities here. You have had a tough road but I'm afraid a tougher road may lie ahead. My advice would be to make sure you know his wishes (vent, dnr? Etc), make sure your wills and other legal documents are in order. And you MUST find help. If insurance, social security etc will not pay, talk to local ALS chapter for ideas. You need to stay healthy for your kids. Get some help! Wishing you the best.
WMS.

 

[cheerleader]

WMS10- what a pleasure to read your post! You sound so much stronger than when you first came here! Hope that means you are doing as well as you can, and feel supported and understood here! A support group means so much in our well being!

 

[JimInVA]

Greetings, Lisa!

I'm glad you found us. One should never have to go through this... and especially not alone and without someone to share with who understands. I hope you can find some refuge and the feeling that comes from finding yourself in good company. Sometimes, we need a questioned answered. Other times, you'll do the answering. And there will be those times that you simply need to talk. Just remember that while each one of our rides on this ALS train will be unique, there is much that we all have in common. Welcome...

Jim

 

[affected]

welcome Lisa to the club no one wants to join.

I'm so sorry that you have had this dumped on top of everything else. We will do all we can to support you along the way.

 

[Lisa d]

Thanks for the support! I felt the same way about you when I read your first post!

 

[andycap]

Welcome,Lisa you will find more knowledge here then at any doctors office.I read what everyone is talking about on this Forum just about everyday and feel a little wiser for it.

Keep Coming Back.
Andrea