"I Have ALS, Now What?" Introduction
The day I was told I had ALS I first cried, and then looked at what was next. Not knowing where to go I found myself looking on the Net at different sites and joined multiple ALS Facebook groups. Eventually, as I got connected I settled in on a few and left many of the Facebook groups. I am not saying don't join the groups because finding a good support group for yourself and you caregiver is very important. On the sites you will find the gamut from "Living with ALS" to "I'm dying and mad as hell" and it’s ok to be mad, sad, even scared but, I choose to "Live with ALS" and I am mentally and spiritually at peace.
Find a mentor, that's right I said mentor. This is a person(s) who you can ask questions on programs, funding, medical support and caregiver information. If your significant other is your caregiver they need a mentor as well not a friend. “Why not a friend you ask”? In my opinion a friend is there for you emotionally but a mentor will guide you through your process and grief with complete empathy as they have or are going through the same process. Of course in the end your mentor will become a friend and the benefit is you just gained another one in the worst time of your life.
So this post I hope to get you off on the right path. Through my research and others, I have gathered some documents and websites you can use to get the information you need to “live with ALS”. Reach out and find a mentor, join support groups get involved and start the medical process you need. When working the medical process always six months ahead. You may not need a wheelchair, special adaptive vehicle or other medical devices now but, you will and you want them there when you need them. The only caution I have for you is ether formal or informal will always have a few “dying from ALS” members and following them in my opinion is not good for you mentally and physically. You know the old saying “buyer beware”.
I am not going to get to deep on the spiritual speak here because I know we all have our own walk but, for me joining a church and finding my spiritual brother has help me so much mentally. I highly recommend it.
Lastly, I am her for you. Yes, you may not know me now but, I promise when you do we will be friends in the end. I hope the tools found in this post help you as they do for me.
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