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Posts: 3
Joined: Jul 29, 2011

Would like to speak with someone that suffers from ALS/Lou Gering's disease

Posted by @yellowdaisy, Jul 29, 2011

Hi everyone,

It’s painful when you find out a loved one is sick and then out of nowhere they tell you they suffer from a Disease called ALS!!!! well this person was my mom that just turned 64… We live in NJ and I have requested it a appointment for her to the MN mayo Clinic… Can someone help me? as far as what steps to take??? and what to expect…

God Bless Everyone,




Posts: 1
Joined: Aug 06, 2011
Posted by @mart, Aug 6, 2011

Hello, San,
My beloved husband has ALS. It is SO HARD to hear about anyone suffering from this monstrous disease for which there is no cure. Most neurological diseases like MS, MD and Parkinson’s have no cures but they are at least not fatal. ALS kills people within five years of diagnosis, so we are told by the Neurological Insitute at Columbia University. If you are near Princeton U perhaps they have a similar institute attached to their medical school and can help you and your Mother. All very best wishes go to you both.


Posts: 3
Joined: Jul 29, 2011
Posted by @yellowdaisy, Aug 9, 2011

Hi Kath,

Sorry to hear about your husband, yes indeed it’s monstrous disease that I can’t believe with so much technology that they have not found a way of stopping or found a cure for this 🙁

Let God be your strength and help you and your husband this difficult journey.
I thank you for the advice and i will look it up.

God bless



Posts: 2
Joined: Jan 08, 2012
Posted by @lexie4444, Jan 8, 2012

my brother has


Posts: 9
Joined: Sep 10, 2011
Posted by @essence10, Sep 10, 2011

Hi, I am sorry to hear about your mom. Presently, my brother has ALS and he is a great person for you to talk to. He is very knowledgeable about
ALS and I am sure that he wouldn’t mind talking to you.


Posts: 1
Joined: Apr 23, 2012
Posted by @kiwicafe, Apr 23, 2012

I was diagnosed with ALS in August 2011 after symptoms began appearing earlier in the year. It’s a toughie. I just finished reading Luckiest man and it saddens me that nothing more is known about this condition than when Gehrig first visited the Mayo Clinic. I am realistic regarding my situation, I take natural supplements and am on a ViPap breathing device at night which has made a huge difference. ALS is a part of life. We all die at some point. We don’t appear to have much choice over how we die 🙂 and so what time is left is for living. Focussing on what I can do. I write and work on other creative endeavors. I blog I try and write transparently regarding my circumstances. The main thing I hold onto is my faith and that I am not alone. I am not a christian and stay away from the whole idea. maybe I am a gnostic 🙂 I like the search for knowledge. Today I can walk from the house to my garden studio without poles. I sit in my wheelchair and write. If I stand and try to do housework or cook, I am headed for a bad day. My partner is awesome, we are a team. My family are coming together in ways they have never done before. I feel blessed. I totally relate to Lou Gehrig, my life, lived in NZ, Australia, New York and Venice Beach, now back in NZ, has been awesome. I am filled with gratitude.

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