Stroke of Solstice

Winter Solstice 2015

Linda and I have been hosting “dinner with Siobhan” each Monday night for a while now. It’s a way of keeping Siobhan in touch with her friends. A couple of her friends have gone off to college and during dinner we video conference with them. One extra special good friend always shows up, and we occasionally attract other people who can’t make it regularly. The dinners are a way to provide Siobhan with variety in her weekly routine while letting her know that her friends care about her. Her cognitive disabilities mean that she can’t text back and forth with them but she can participate in video conferencing and loves it when people are here. This past Monday, December 21st, we had an exceptionally lively party with lots of people here. I made a big pot of my special meatballs, sausage and sauce. I cooked up a big box of De Checco angel hair (capelini) number 9 pasta, and we had salad, ginger beer, and sparkling cider. At 8:49 pm PST, the stroke of the Winter Solstice, I got a wonderful solstice card and we distributed some gifts, but not all gifts, since some were Christmas gifts. It takes a little extra thought to live in a mixed Solstice/Christmas family.

The Next Day

The next day dawned like many others. Hours of getting Siobhan ready for her day program, bustle around the kitchen, showers, checking schedules, getting ourselves ready for the day. Siobhan had an appointment at 3:00 pm in Beverly Hills at Lerman and Son Orthotics and Prosthetics for an orthotic fitting. She returned from her day program at 12:30 pm, I fed her lunch and eventually we made our way to Beverly Hills. Linda joined us directly from work and we did the appointment together. The fitting went well and now Siobhan has new Cascade DAFOs for her feet. Finished, we went out on the street and I said something to Siobhan and noticed that I was talking differently. We came in two cars, and Siobhan elected to ride back with Linda so off they went, closely followed by me. In the car I began experimenting with speaking. I wasn’t doing too well. My speech was slurred. I was in trouble. We arrived home quickly and I indicated that Linda should call my cardiologist. She looked up the symptoms on a medical info card she keeps handy in the kitchen and concluded that I had one of the symptoms of a stroke. Thanks Linda, for being so smart and taking decisive action when needed. Linda and Siobhan took me to the emergency room at St. John’s Hospital here in Santa Monica, where staff started evaluating me immediately. From the time of first symptoms to the time of first evaluation was about an hour. This turned out to be a crucial point.

Just In Time

As happens so often in this world, exact timing is very important. This has always been a bother to me. I have a diffused sense of time. I like to think that centuries of farming in my dad’s family have imprinted on me in some ways. Things in my time mirror appear longer. I also wonder why so many things start early in the day. From this you can see I’m not really cut out for reporting for work at a physical location. My dad always said about me: “he loves his job so much he’d lay down beside it.” But in this one special case, the case of getting me to the emergency room quickly, even I could tell that it was essential to do so. As it turns out, we arrived just in time.

Communication Rights

The evaluation team grew until the emergency room bay I was in was wall to wall people. As the assembled multitudes began to interrogate me they quickly decided that it was easier to get their information from Linda. Linda and Siobhan were outside the bay door and Siobhan was looking very upset. She normally does not like hospitals; she really doesn’t like hospitals when I’m the patient. Someone would ask me a question. Someone else would ask Linda. Linda answered, and then someone else would ask me another question. My communication rights went right out the window. I was reminded of Glenda Watson Hyatt’s life long struggle with being cut out of conversations with doctors because she is speech and language disabled. Some of the answers were being handled well by Linda but when she didn’t know something or had it different than I knew it to be and I had the answer the team was still deferring to her. In one instance I shouted to make my point. All heads swiveled in my direction, for an instant, and the cycle started over again. Frustrating.

Neurologist

I don’t know when, exactly, the neurologist arrived on the scene but when he did things got dramatically different. I will omit some details here because this is not a doctor show. The neurologist told me that a quick CAT scan showed no evidence that I was having a stroke but they were acting as if it were a stroke and there was one treatment for it, and it was essential to treat me immediately. This is where that timing thing comes in. The treatment had to be invoked quickly after first onset of symptoms. Later and the risks were greater than the cure. I chose to have the treatment.

Tissue Plasminogen Activator

This may not be a doctor show, but this detail is important. The treatment is known as tPA which stands for tissue plasminogen activator. There are guidelines for when to administer the treatment and by the time I was treated I was still well within the early window of opportunity. Also known as the clot buster, it broke up any clots anywhere in my body. There are more details such as possible side effects but I’m here at home on Friday typing away as if nothing happened. The only noticeable effect is my speech, which sounds slurred to me. The diagnosis dealing with my speech is dysarthria, resulting from neurological injury of the motor component of the motor-speech system. The doctors and speech and language pathologist all agree that I will probably lose the dysarthria entirely in a short period of time. I hope so. In the meantime I’m glad things turned out the way they did.

Discussion at @AccessibleJoe

Restricted Access Board

Fee Based Distribution

The U.S. Access Board is at the Notice of Proposed Rulemaking stage with 10 new standards, including the 508 refresh, and they are proposing to make some of the new standards incorporated by reference available only by fee and with distribution restrictions. If some of the documents we need to refer to are only available for a fee it will affect us negatively. For those earning less, the impact will be greater.

Comment by Public Resource

David Halperin and Carl Melamud of Public.Resource.Org have written an excellent comment on this aspect of the proceedings.

This issue was brought to my attention this evening by my colleague Sina Bahram who co-signed the comment.

Restricted Distribution

I have been using Section 508 guidelines, covering web accessibility, in my accessible user experience practice since 1999 and I know that the refresh of Section 508 is long overdue so I’m all for getting this information published, but this is the wrong way to go about it.

More onerous than the fee structure, the restrictions placed on open sharing of those documents will have a very chilling effect on my ability to debate the meaning of those documents which is the essence of what we do when attempting to apply the standards.

No matter how they are written, it’s the interpretation of the standards in the fast paced world of accessibility practice that matters. If we can’t freely share and debate the information we will be unable to practice effectively.

I am glossing over some details because it is late and I’m typing this on my phone. Fortunately, the comment referenced above is very thorough and explains the situation very well.

Action Required

I have written to the American Association of Law Librarians (AALL) which has a great interest in open and free access to legal information like this. If you can think of organizations like AALL and can spare a few minutes to alert them to this situation, or you can make a comment about it on the Access Board site, please do.