New Diagnosis

[PaulGrewe]

Hello,
I was diagnosed on Aug 24,2017. My condition is progressing quickly. My legs are getting weaker. I went from walking two months ago to barely walking and using a wheel chair to be mobile. This some scary stuff happening in such a short amount of time. I am taking riluzole for now. Have contacted the ALS clinic at Johns Hopkins about Radicut. They sent me the paperwork and will be handling everything for me. I hope it helps. As fast as this is coming on I'm scared.

 

[Nikki J]

Sorry to welcome you. I hope things slow down for you. Of course you are scared- who would not be? You are among friends here and as you get to know us you will see there is life to be lived.

Please ask questions when you want to. Search ( use advsnced option) can be helpful too

Best of luck with radicava.

 

[KimT]

Stay connected to our community. The people here are the best. Do you have a good support system?

 

[soonerwife]

So sorry to hear about your dx and that things are changing so quickly. You have found a great place for info and support.

 

[Angiegal]

Hi Paul
Welcome. Hope you stick around, the folks here are super helpful, and amazingly resourceful.

Angie

 

[Narrowminded]

Hi Paul,

Welcome. This place is like heaven on earth. Great people here and someone will usually have a good answer to your question, or at least know where to point you if they don't.

Hugs to you as you absorb what's going on. It is scary.

hugs,

Sue

 

[Atsugi]

Hi Paul,
Are you a military veteran? We have a special forum to explain VA benefits.
Have you had time to take care of your final affairs? Don't wait too long. We had a lawyer visit my wife in her hospital bed here at home--just in time.
Google "Five Wishes Living Will." It's a comprehensive guide to Advanced Directives. It's important to have that in writing.

 

[lgelb]

Very sorry, Paul. Ask questions any time, on any subject.

Best,
Laurie

 

[PaulGrewe]

Stay connected to our community. The people here are the best. Do you have a good support system?

No Kim I do think I might have found one.

 

[PaulGrewe]

Hi Paul,
Are you a military veteran? We have a special forum to explain VA benefits.
Have you had time to take care of your final affairs? Don't wait too long. We had a lawyer visit my wife in her hospital bed here at home--just in time.
Google "Five Wishes Living Will." It's a comprehensive guide to Advanced Directives. It's important to have that in writing.

Thank you for the heads up. Hard taking care of yourself and looking for living. found a place hope this one is it.

 

[PaulGrewe]

Hi Paul,

Welcome. This place is like heaven on earth. Great people here and someone will usually have a good answer to your question, or at least know where to point you if they don't.

Hugs to you as you absorb what's going on. It is scary.

hugs,

Sue

Yes it is very scary to deal with.

 

[Tedstehr]

Paul, sorry to hear of your diagnosis and what you feel is a fast progression. Coincidentally, I was diagnosed on the same day.

When did you first notice symptoms? That might give you a better idea of your progression. I echo the sentiment of others, this is a great place with wonderful, caring and knowledgeable people. Welcome Paul.