The ALS Forum - How On and Offline Support Can Work

Something I would recommend with all my heart to anyone facing an ALS diagnosis as a patient or a caregiver/close relative is some type of external support.  Friends are great, but they don't have ALS and their hearts are breaking for you.

You need people to discuss things with, things like Health Care Directives and shower chairs and the best canes, things like what a clinic visit feels like. Things like coming home and looking at each other and dealing on three or four levels with a "no treatment, no cure" prognosis/diagnosis while you do laundry, work, car repairs and try to get some pleasure out of life.

In that way, while Stage 4 cancer families and people coping with disabilities of all kinds have some things in common with you, where you find of heap of "YES - I get it! Here's what you can do about issue X!" is in that thing called the ALS Community. In 2017, you experience that community mostly online in places like ALS Forums. You can also experience it via participation in ALS fundraisers like the annual MDA and ALS Walks, or with in person support groups.

I dislike in person support groups. Seeing a lot of people at once in various stages of ALS is difficult for sure. There is at least one in person group for CALS only (family/caregivers of ALS patients) but somehow I still find myself preferring online.

I can go to ALS Forums, and it's the one spot where interact with people dealing with the same thing. I feel less alone, less like the freak that got hit by lightning because maybe somehow I displeased God. No, God does not work that way, and here are others, and Brian definitely did not displease God because he is just an awesome guy, so good on that count.

We do lots of stuff on our little Forum, including telling people with severe health anxiety why they do NOT have ALS. Providing resources for the newly diagnosed and their CALS. Sharing info about everything from how new research studies are going to the best bath chairs, power wheelchairs, and why leg braces are a great idea for many. We talk feelings too, but usually in a different way then you see in say therapy or even with friends. In the forums you can talk about the screaming in your head and ideas for quieting that down so you can go about coping with life and maybe seeing a movie. It's not the analytical exploration or even the sympathy that is emphasized (though there is plenty of that too), it's more about keeping it together and getting it done.

The thing you have to be careful with is reading too much when you are in the wrong mood. Some people's stories will haunt your nightmares, and are powerful reminders that we are all in the same place in the end. Those stories can be okay if you are prepared for them, if you are in the frame of mind to value today and not get too wrapped around the future. I can even be supportive to others in those later stages usually, but some days, wow, just wow.

I have "met" a lot of everyday heros on the Forum, and I am blessed to "know" them, if only online.

Thanks Forum friends for helping us enjoy a glass of wine and a Weeds binge watch on Netflix. I don't know what we would do without you.

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