son recently diagnosed
- Thread starter GailV
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GregK
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Take a deep breath and try to be calm. There is help for you, you've come to the right place.
23 is pretty young to have ALS but not impossible, get a 2nd opinion from a recognized ALS neurologist.
Contact the local ALS Association, which I believe is this one: http://web.alsa.org/site/PageNavigator/NNE_2_contact_us.html
Apply for Social security Disability Insurance (see reference to Sticky below)
Read the Sticky topics at the top of the General Discussion forum:https://www.alsforums.com/forum/general-discussion-about-als-mnd/
Especially this one: https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html
Is your son a veteran?
23 is pretty young to have ALS but not impossible, get a 2nd opinion from a recognized ALS neurologist.
Contact the local ALS Association, which I believe is this one: http://web.alsa.org/site/PageNavigator/NNE_2_contact_us.html
Apply for Social security Disability Insurance (see reference to Sticky below)
Read the Sticky topics at the top of the General Discussion forum:https://www.alsforums.com/forum/general-discussion-about-als-mnd/
Especially this one: https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html
Is your son a veteran?
4tloml
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Gail, so very sorry for your son's diagnosis. Greg's advice is right on, though, about getting a 2nd opinion from an ALS specialist, making sure everything else is ruled out. Once that happened for us, I found this forum to be the greatest help available.
Read through the stickies and the threads with topics that are relevant, then ask your questions, vent, whatever you need for support here. There are some very wise people here and although everyone's experience of ALS is unique, the road we all walk is similar. There's a lot to be learned from those farther down the road and they are generous to share it.
Read through the stickies and the threads with topics that are relevant, then ask your questions, vent, whatever you need for support here. There are some very wise people here and although everyone's experience of ALS is unique, the road we all walk is similar. There's a lot to be learned from those farther down the road and they are generous to share it.
MaxEidswick
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>get a 2nd opinion from a recognized ALS neurologist.
Ditto that!
Ditto that!
GailV
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Thank you all.
We did get a second opinion. He is being seen by Dr. Cudkowicz who is the director of the ALS department at Massachusetts General Hospital.
He is receiving disability benefits and has Medicare. He also registered with the ALS Foundation.
He is still able to get around on his but with a lot of difficulty. And his speech is getting effected now and it worries me so much. He is one of 5 of our children and its so hard to be able to help them through all of this also.
I was hoping I could get some advice on how to do all of this? I will eventually be his full time care giver but I was diagnosed 3 years ago with MS so I need to learn how to stay strong. I am the rock of the family with tremendous support from my husband and my extended family and friends. Please help me to help them.
We did get a second opinion. He is being seen by Dr. Cudkowicz who is the director of the ALS department at Massachusetts General Hospital.
He is receiving disability benefits and has Medicare. He also registered with the ALS Foundation.
He is still able to get around on his but with a lot of difficulty. And his speech is getting effected now and it worries me so much. He is one of 5 of our children and its so hard to be able to help them through all of this also.
I was hoping I could get some advice on how to do all of this? I will eventually be his full time care giver but I was diagnosed 3 years ago with MS so I need to learn how to stay strong. I am the rock of the family with tremendous support from my husband and my extended family and friends. Please help me to help them.
Nikki J
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I am very sorry. You have a lot to deal with. And you need to take care of yourself so that you can help the rest of the family. How old are your other kids?
You are in good hands with Dr Cudkowicz. I go to MGH too. Have you seen the speech therapists? If he is having speech issues he should be working to get a communication device. I am told the clinic will be adding a social worker soon. If you are not already working with one through ALSA or MDA you should try to see him/her.
Maybe we will meet up at clinic sometime!
You are in good hands with Dr Cudkowicz. I go to MGH too. Have you seen the speech therapists? If he is having speech issues he should be working to get a communication device. I am told the clinic will be adding a social worker soon. If you are not already working with one through ALSA or MDA you should try to see him/her.
Maybe we will meet up at clinic sometime!
Last edited:
affected
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Hi Gail, you've come to the right place for this help.
If you click on the general discussion about ALS/MND link at the top, there is a bunch of posts there we call stickies (because they stick to the top all the time).
They will give you some great starts for where you are at.
After that, you can go to the CALS section and start a thread about anything specific you need help on.
I'm sorry we are welcoming you here xx
If you click on the general discussion about ALS/MND link at the top, there is a bunch of posts there we call stickies (because they stick to the top all the time).
They will give you some great starts for where you are at.
After that, you can go to the CALS section and start a thread about anything specific you need help on.
I'm sorry we are welcoming you here xx
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