Talking to a friend about ALS

[jtone1234]

Hello everyone!
I have a friend who recently tested positive for a gene for a familial form of ALS. He appears to be presenting with the begining stages of the disease, and has not seeked any formal medical treatment. I am a newly graduated registered nurse, and he often asks me questions about the disease and certain aspects of treatment. I have done quite a bit to educate myself on the disease process and treatments (I primarily take care of cardiac patients so I have had little exposure to neurological disorders other than what they covered in school), but obviously providing any kind of long term effective care is way out of my level of expertese (or legal ability, for that matter). I would like to talk to him about seeing a neurologist (let alone look into support groups and other psychosocial support), but I don't know exactly how to approach such a conversation (it's quite different when it's your close friend as opposed to a patient, as you can imagine). I was wondering if anyone out there has any suggestions.

Thanks, and God bless.

 

[Phil M]

Its a tough call. For one, he is probably not in any danger right now from not going. I had obvious symptoms for a year before I got my diagnosed, and that is totally my fault. What they will do is...do some test, the worst of which is a emg. And I didn't think it was all that bad. Anyway, If he got his diagnosed, they will put him on Rilutek, and a muscle relaxer if he is having cramps. Thats about it! I'm 3 years in, and thats still the only medication I take for ALS, other than something to help dry my mouth out.
I'm sure most people here are going to say get him to go now, and I don't disagree with that either. I'm just saying in my case, I don't think it hurt a thing. But...I was a slow progresser, and fals can progress fast in some people. I think he will go when he is ready, and you could talk to him if the right time presents itself.

 

[Katie C]

I think if you read your own post you've already answered your question... you wait for him to bring up questions and then you say look.. I care too much about you to risk giving you the wrong answers. This is way out of my expertise. I would feel so much better if you would see a neurologist.. would you like me to help you find one?

You sound like a very good friend.. hang in there, and good luck.