New to ALS... Any info welcome

[Emgio]

Hi there,
My mum has just been diagnosed with ALS this week and I just wanted to get as much information that i could. I have been reading through lots of web pages with "medical" info on it, but wanted to get some advice from people who are living with this disease and know more than just the medical facts.

Is there anything I can do for my mum? Any herbs/remedies/lifestyle choices/foods etc that can help? Is there anything to make her life easier? She is still mobile, walking with a walking stick or walker depending on where she is going. She can no longer drive, and her speech is becomming really slurred. Is there anything i need to know that I won't find on these websites?

I really would appreciate any replies. Very scared and confused at the moment.

Thanks so much in advance!
Emma

 

[missmineau]

Emma, With heavy heart I welcome you to the club. My mom was diagnosed in the fall of 2010 and it has been quite an emotional ride. Stay connected on this forum, read and ask questions, it has helped me a lot. Just knowing your not alone in this journey has given me comfort. Is there and ALS Chapter near you? They are full of info and support ideas. As the boy scout motto goes "be prepared", try if you can, to stay one step ahead of the disease, as in what you will need for equipment, ect. Make sure you have someone in place to talk to, this disease brings out a huge range of emotions on a daily basis. Most importantly spend as much time as you can with your mom, treat each day as a gift! Know you are not alone in this journey we are all in it together.

 

[KC2U2]

sorry to hear,, welcome to the forum

 

[KissJ]

Welcome! It is sad that you are a member here, and yet it is a blessing too. You will receive a lot of support here! Is your mother a Veteran? My husband is and receives benefits as it is considered a veteran's disease with a 60% high occurance with Vets. The benefits are very helpful, but they are slow. So, yes be prepared.
Even if she isn't a vet, you have to be prepared! You have to stay a step ahead of the monster! In otherwords, be prepared with equipment, information, medical issues....etc... As it progresses you will need to be prepared.
The ALS and MD Associations are there for you and are very helpful. They have closets with equipment to loan, transportation to take you to and from doctor visits taking you straight there and back so you don't have to pick up people along the way! We have a social worker that is with the ALS and she is there for us 100% of the time with advice, resources, and experience. She is a heaven sent. So, register with them...call them, and the minute you do, they are there for you!

 

[sadiemae]

This is full of GREAT info. Love and miss you Joel!

http://www.lifewithals.com/index.html

 

[notgivnup]

Emma welcome, so sorry for your mom's d x. As you search the boards you will find lots of info but most of all you will find people willing to help with love and support on this new journey.

 

[Emgio]

Wow... thank you so much to everyone that has replied... i already feel like i have a lot of support. And this is my first time using a forum so i'm not really sure the best way to write on here. No she is not a veteran, and no I haven't registered with any associations, so I will definitely get on to that. I keep googling the disease hoping that I will see something hopeful... but it doesn't look like it. I think it's going to be a long road ahead for us. Thank you so much for responding.

 

[Emgio]

Sorry that you have lost someone to this awful disease

 

[momap53]

Emma, so sorry you needed to find and use the forums. It's a wonderful resource!

 

[tmasters]

Emma,

It's good to be hopeful. A positive attitude helps. There are many drugs in the research phase and I'm sure there will be something in the next 10-15 years but unfortunately this is too late for most of us.

I would caution you to be TOO hopeful as you search the internet for solutions. There are many scams out there. Sadly, there are people willing to take advantage of a desperate person.

-Tom