ALS no help

[Harlin]

I've been living with ALS about a year, but got diagnosed in August 2012. So far, I only lost most of my speech and weak turning things. The only person that helps is my friend. I am worried that she does realize what's coming. My Dad had ALS so I know what's coming.
Is there aware to get help when you have no family? I go to dr alone, I am getting diaphram pacer installed alone . Lucky I can still drive but I am worried when I have to depend on other people. Any ideas


Thank you

 

[pearshoot]

maybe a coffee bruch, invite all your friends, tell them whats going on, whats to come, and ask for their assistance when they have time to help. i know this will take a lot of courage on your part but you may be surprised how many friends are waiting to be asked to help. do not turn any assistance offered no matter how small. number of turn downs can result in turn offs. with limited speech print it out and have someone read it.. wishing you success

 

[bob_s]

Contact your local ALSA. Mine put me in touch with support services. Also MDA is bigger and can be helpful. I am now getting some home visits after falling, which is covered by insurance. Are you on Social Security disability? And then you get Medicare. With ALS diagnosis, approval is fast tracked.

Bob

 

[dbltree]

Contact your local ALSA. Mine put me in touch with support services. Also MDA is bigger and can be helpful. I am now getting some home visits after falling, which is covered by insurance. Are you on Social Security disability? And then you get Medicare. With ALS diagnosis, approval is fast tracked.

Bob

I second Bob's comments, our ALSS is awesome and a huge help but also am blessed with a wonderful wife and church family as well.

 

[Harlin]

I just got social security disabilty and medicare and keeping Aetna as backup. Those a great Ideas I never thought of that! Thank you so much.

 

[ltbeauti]

to find your nearest ALSA chapter go to

In Your Community - The ALS Association

they have helped me so much. Get in touch with the patient seervices coordinator. They have helped me with grants and a walker, scooter, travel chair and other stuff. They can help.

 

[Barbie]

So Sorry you are facing this alone right now. there is also an on line care giving calender that you can ask your friends to contribute to there are everal but one is called Helping hands dot com (or Org) and another is caring bridge. people you know can sign up for things you need with out you feeling like You are constantly asking and being rejected which i so hard emotionally.

check it out.

good luck!