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anor

New member
Joined
Sep 17, 2017
Messages
3
Reason
Loved one DX
Diagnosis
09/2017
Country
us
State
Illinois
City
chicago
hi everyone. i'm writing this with tears in my eyes and i'm reaching out for support. a family member was just diagnosed. i'm terrified, scared, in denial. i don't understand what is going on and i keep breaking out into sobs as i walk down the street. do you recommend a second opinion? what is to be expected with the new drug radicava on the market? what about stem cell therapy? please help. God bless you all.
 
I'll add two cents:

Stem Cells take a lot of money and I never heard of anyone getting any benefit in ALS.
Always get a second opinion, and from an experienced neurologist who specializes in ALS. Think Mayo Clinic, world class experts.
Support your family member with physical help: food, dishes, mow the grass... Their caregiver (spouse?) is going to be very busy.

Lemme add this: It's my personal belief that a person with ALS is totally in charge of their own life and manner of dying. So I think the PALS should get whatever they want, even if we disagree with them. We might think their decisions are wrong, but it is, in fact, their life.
 
To add my 2 cents to Mikes 2 cents...

Stem cell "clinics" have two, and only two, results: a depleted bank account and a disappointed patient. Some people grow tumors.

There are valid FDA approved trials ongoing, Google Brainstorm, but this technology is NOT available from a clinic.

This is indeed my opinion, but it's supported by facts and my observations over 5 years of having ALS.
 
thank you both. i read online that brainstorm might come to canada in 2018. does anyone know anything else about this? will it be available to anyone who travels/pays?
 
Very doubtful, Canada has socialized Healthcare...
 
Anor, give yourself time, and your family member support as well. Start reading a little at a time, for a fuller picture and you will see kinds of help you may be able to provide when you are calmer. Remember that everyone progresses differently, but the one thing we know is that the future isn't written and you can still have good times with your relative.

Best,
Laurie
 
Thank you Laurie <3
 
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