From Pam, a Caregiver of a PALS:

 

My idea is to set up a blog for caregivers with tips that only a caregiver can give, as well as some personal essays on living with ALS.

The idea is that frenzied caregivers could Google "caregiver tips ALS" and find ideas that my husband Steve and I have from whys and hows of using pivot discs to what kind of clothing works for wheelchairs (for instance, we like Target's men's sleep pants because they have a button close and are very soft. We like Eddie Bauer's new polo shirts, but order them in Tall so the shirt is less likely to ride up and give a belly flash.) Because my blog is independent, I can provide a link to these sites and not worry about the legal ramifications of making an organizational recommendation.

As we know, ALS affects each person differently, so I would like to meet others who have different circumstances, such as using a working with speech difficulties , using a vent, feeding tube, or what to do when your arms go first, not your legs. Eventually, I would either interview or write up their tips, or if they have the skills, publish their writing as guest contributors. However, for now I'm looking to just get a format up and start blogging three times a week.

Personal essays would be reflections on issues like learning to accept new medical equipment in your home (I put our shower chair out on the porch for a month until Gail Houseman came over and told me, for a shower chair, it looked pretty good. Connie says this is a common reaction, and it brings a bit of humor to share), How we still go out on hiking trails, no that we have a power chair, and reflections about how our different (adult children) manage their relationships with us living with a longish illness.

The social media aspect is less about a commitment to my daily blogging, but rather a way for me to collect for others simple things we've learned along the way and to get them up without a lot of worry about publishing a book someday. Not every ALS patient has the time to learn what we are learning after two years with the illness. I would expect comments to the posts, but not discussion boards.

I also imagine developing guest contributors, with the idea that I could cultivate an editor-in-chief to keep the blog going when I am worn down or peter out with new material. However, I don't have the energy to manage a large effort.

Rather, I'm looking to build a simple format with broad categories that allow me to tag and keyword topics as they are written about as a blog and to store them. Today's blogs allow for twitter and Facebook feeds, but I'm not interested in doing either, so if there were a companionable Twitter/Facebook person, I'd consider linking or integrating the feeds. Likewise, I imagine a series of links that are descriptive of the most useful parts of various sites (for example, "The national ALS Association offers a free download of a sample Living Will to help you think through end of life issues common to ALS patients.) or Alisa, you offered many links to adaptive equipment at a recent caregiver's workshop, and I might provide that link, but then write what we liked about the site and what wasn't as helpful.)

I'm not looking for the association to sanction content, but I am looking for early collaborators who would be willing to help me think through category names and common search words that I could build the site around and make it most helpful. Also, if you know of any sites that sound similar to what I'm describing, I'd appreciate a link, so I can be sure I'm not reinventing something I just haven't yet found!

I welcome your thoughts and ideas!