New to ALS... Any info welcome

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Emgio

New member
Joined
Nov 14, 2011
Messages
3
Reason
Loved one DX
Country
AU
State
Victoria
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

Active member
Joined
Dec 2, 2010
Messages
43
Reason
Loved one DX
Country
CA
State
Sask
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

Distinguished member
Joined
Sep 20, 2010
Messages
229
Reason
PALS
Diagnosis
09/2010
Country
US
State
LA
sorry to hear,, welcome to the forum
 

KissJ

Distinguished member
Joined
Jul 6, 2011
Messages
376
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
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!
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
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

New member
Joined
Nov 14, 2011
Messages
3
Reason
Loved one DX
Country
AU
State
Victoria
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

New member
Joined
Nov 14, 2011
Messages
3
Reason
Loved one DX
Country
AU
State
Victoria
Sorry that you have lost someone to this awful disease :(
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
Emma, so sorry you needed to find and use the forums. It's a wonderful resource!
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
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
 
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