Month: April 2009

bookmark_borderCrip News

Posted on by PaulaO

From ADAPT:

99 Arrested as ADAPT Blocks Independence and Constitution Avenues on the Hill, then Crawls Up the Capitol Steps

April 28, 2009

Washington, D.C. — ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took the fight to include long-term services in Health Care Reform up to Capitol Hill today. On Monday, Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress.

“I guess what happened at the White House kind of got us wondering who is leading the country, the President or Congress,” said Bob Kafka, ADAPT Organizer from Austin, Texas. “Sad to say but President Obama gets a D on disability rights after his first hundred days. Throughout his campaign and currently on his website he promises to support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution. Many of us who voted for him feel angry and betrayed that he isn’t keeping his promise.”

The Community Choice Act (CCA) (S. 683, HB1670), introduced in March 2009 by Sen. Tom Harkin (IA) and Rep. Danny Davis (IL), would remove what is known as the ‘institutional bias’ in Medicaid. B Currently, Medicaid pays for older and disabled people to go to nursing homes and institutions, but won’t pay for the same assistance, generally at a lower cost, in a person’s own home. Many states have limited or no home and community based services with lists that keep people waiting for years in institutions and nursing homes before they have any hope of getting services. Some wait so long they die before their name reaches the top of the list.

“It’s no surprise we decided to have a presence on Capitol Hill today,” said Mark Johnson, ADAPT Organizer from Atlanta, Georgia. “We blocked streets to make it visibly clear that we aren’t going awayb& and we won’t go away until CCA passes or is included in Health Care Reform. Research has shown that people who live in the community are healthier and have fewer secondary conditions. It’s fiscally irresponsible to increase health care costs by not insuring that people have the choice to receive services and supports in their own homes. And it’s bad policy to put all the dollars only into front-end health care, once again denying people with disabilities their civil rights and forcing them to continually be the last people served.”

After police arrested 99 people from both the House and Senate sides of the Capitol, the remaining 400 ADAPT members went to the Capitol, many spilling out of their wheelchairs and crawling up the Capitol steps to hold an impromptu CCA rally, reminiscent of the famous stair crawl on the day the ADA was passed in 1990.

ADAPT winds up its week in Washington on Wednesday by holding a joint rally with SEIU, the fastest growing, largest home care union in the country, with a membership of over 420,000. Sen. Harkin will speak at the rally, as will an ADAPT member and his SEIU attendant. People with disabilities and seniors want workers who are paid a living wage, who have health care benefits, and time off. Supporting a fairly compensated workforce reduces turnover, increases reliability and insures a better trained attendant workforce for those who need assistance in their daily lives.

“After the rally, we will go in teams to visit every member of Congress, asking them to co-sponsor CCA and include long-term services in Health care reform,” said Barb Toomer, ADAPT Organizer from Salt Lake City, Utah. “There will be well over 1000 people visiting Congress on Wednesday from a number of different disability and provider groups, all with the same message: pass CCA and include long-term services.”

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FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org//

I used to work for United Cerebral Palsy of Mercer County (NJ) as the Program Coordinator for the RespiteOptions program. My job was both cool and frustrating as heck. I had a staff of respite workers that went to the homes of people with disabilities and stayed with them so the caregivers could have time off. While there, the respite workers did everything from helping with homework to bathing. This gave the caregivers (usually exhausted parents) time to get away and do their own thing. Some caregivers did the grocery shopping or had dinner out or even just took a long nap. For the most part, this was only for 40 hours a month but for most of the families, it was what they needed.

We were funded partially through the United Way. When the program first started, they (UCP Mercer) thought that with the respite care, a family would eventually no longer need the help. It turned out to be the opposite. And the United Way wanted to see more families being served but with the same amount of funding. One year, a young mother of a daughter with severe disabilities did some research. The state of NJ did not have an institution with the level of staffing her daughter would need. Instead, she would have to go to (I think) Indiana. And NJ would have to foot the bill. The cost of a single year for this one pre-teen girl? Over $300,000. For one child. Our yearly budget to serve 40-50 families a month? $100,000. This mother admitted that without that scant 40 hrs a month, she would not have the energy to keep her daughter at home. United Way got the point and continued to fund the program. Remember, this was way back in ’88 or ’89. Prices have significantly increased since then.

It has been proven over and over that keeping someone at home is much cheaper than paying for institutional care. When in their own home (or even a small group home) the person is happier, healthier, and either improves or maintains their level of abilities. My friend Jean has managed to keep her son Sam out of an institution. She’s had to prove how much better he is at home in order to keep his nurses. In an institution, Sam would not have advanced as far as he has since his brain injury 3 yrs ago. The nurses are much much cheaper than the institution would be yet she has to fight and appeal on a regular basis.

Medicaid and Medicare could save themselves a chunk of change by allowing folks to stay at home. Institutionalized care is a model that does not work for all people. When someone in their 30s has to live in a nursing home because Medicare/Medicaid won’t pay for home nursing, that is wrong on so many levels.

bookmark_borderPost Notification Subscriptions

Posted on by PaulaO

If you are already subscribed to be notified of new posts, you will need to re-subscribe using the new method.

In two weeks (or whenever I get around to doing it), I will delete the database section for all current subscriptions registered with the old form (the one that was in the sidebar). If you do not re-subscribe, you will no longer receive notifications. Basically I am switching from a non-WP plugin form to one that is a plugin and easier to manage spam (yes, the bastids get me that way, too).

New subscription page link

As always, if you have any difficulties with either process, just let me know.

bookmark_borderBrain Cells vs Space Time Continuum Thingy

Posted on by PaulaO

Guess which one won?

Okay, so I get that when we look at starlight, it is starlight that first left the star a long time ago. I get that. The star could be blown up into smithereens but we don’t know that yet because the light from it hasn’t gotten here yet. I get that, too. The following is from a LiveScience article about a “Giant ‘Blob’ Found in Outer Space“. It’s a cool article with puzzling questions with no answers. Yet.

A strange giant space “blob” spotted when the universe was relatively young has got astronomers puzzled. Using space and ground telescopes, astronomers looked back to when the universe was only 800 million years old and found something that was out of proportion and out of time.

(…)

Ouchi and Ellis said one possibility is that by chance, astronomers captured the moment a galaxy was forming in the early universe — something that never has been seen before.

As astronomers gaze deeper into space, they are looking farther back in time. What Ouchi found was from 12.9 billion years ago. Only three other objects have been seen that are from deeper in time and space.

Now, didn’t that just fry a few more brain cells? So, like, the further we are able to look into space–other universes and stuff–the further back into time we are seeing. But, wouldn’t we really be seeing the future? No, that’s not right. If my imaginary star blew up yesterday, I’d not know it until 300 yrs from now because it is 300 light years away. But by aiming a really strong light at it…Oh, Wait….I think I got it….We are looking back in time because what we are seeing happened 300 yrs ago. And the further into space we can look, the further away the light source, so the further back into time we go.

Ouch, there went another one.

I think I will write Fantasy novels and leave the SciFi to those who can grasp these concepts long enough to make them real in their manuscript.

bookmark_borderThe Science of Night Owls

Posted on by PaulaO

Ha! Ha freakin’ ha!

I got you now, all you weirdo “early birds”. Ha!

Night Owls Stay Alert Longer than Early Birds

The early bird may get the worm, but the night owl has more stamina, a new study suggests.

The differences come from the interactions between two regions of the brain, including one that is home to the master circadian clock.

(…)

The participants went to a sleep clinic, where they followed their normal sleep schedule. At 1.5 hours after waking up and again at 10.5 hours, they had to perform a task that required sustained attention.

The researchers found no difference in the attention levels of the two groups at 1.5 hours after waking, but the night owls were more focused than the early birds after 10.5 hours spent awake.

The difference was a result of the shift in the balance between the two mechanisms that control alertness: the light-triggered circadian signal and the buildup of the pressure to sleep through the day (called the homeostatic process), the researchers said. As the day wears on and the time since sleep becomes greater, the pressure to sleep mounts; at the same time, the continued daylight triggers the circadian signal that promotes wakefulness.

While researchers had thought that the two systems operated independently, the study found that “the two are always interacting together,” said study co-author Phillipe Peigneux.

(link to full article)

I am confused, though, about the differences. Does this mean that the early birds are functioning less than they did at 1.5 hrs? Or does it mean they are functioning the same, but the night owls are functioning more than they did at 1.5hrs? If anyone gets the journal Science, I’d love a copy of that article.

Aha. Found this excerpt on the Science website of the article titled Homeostatic Sleep Pressure and Responses to Sustained Attention in the Suprachiasmatic Area (bolding of text is mine):

Throughout the day, cognitive performance is under the combined influence of circadian processes and homeostatic sleep pressure. Some people perform best in the morning, whereas others are more alert in the evening. These chronotypes provide a unique way to study the effects of sleep-wake regulation on the cerebral mechanisms supporting cognition. Using functional magnetic resonance imaging in extreme chronotypes, we found that maintaining attention in the evening was associated with higher activity in evening than morning chronotypes in a region of the locus coeruleus and in a suprachiasmatic area (SCA) including the circadian master clock. Activity in the SCA decreased with increasing homeostatic sleep pressure. This result shows the direct influence of the homeostatic and circadian interaction on the neural activity underpinning human behavior.

bookmark_borderWriting Fool

Posted on by PaulaO

In the sidebar, I’ve put back up one of the progress meters. I’m working on Simple Sarah again. This poor novel has been in progress (and finished twice!) since early 2004 but still isn’t done enough for my satisfaction. I’ve started completely over with some cut/paste from other versions.

Simple Sarah is to be a fantasy. The main character is Sarah and follows her as she fills the role of sidekick to a reluctant heroine. That’s it in a nutshell. There is romance involved, but this is a fantasy novel. Right now, it feels more like a romance with fantasy elements. Arrgh. But I am writing on, trying to emphasize the fantasy more. This has been a constant problem with this novel.

Anyone interested in reading the rawness that it is now and telling me if it is romance or fantasy? And perhaps give some ideas as to why you see it that way? I can send it to you via email. I’m not looking for “Love it!” kind of feedback but more of “Loved it and here’s why: ” kind of stuff. Currently it is 144 pages, double spaced, and just over 37K words. It is the first 78 or so pages (and just under 20K words) that are questionable. The beginning of a novel sets the tone for the book. Ya know? The first two chapters of BGCFA was tossed by me and the editor. But I don’t want to toss 78 pages!

bookmark_borderJoella’s Home!

Posted on by PaulaO

We got to go pick up Joella this morning. While we were being given the long discharge instructions, we periodically heard a dog whine and moan and nearly howl. Finally I said “Somebody back there’s not happy.”

The lady looked up at me and said “That’s your Joella. She’s been talking all morning.”

She wasn’t in pain, she was just protesting I suppose. I didn’t recognize her voice because Jo doesn’t often make those noises. I had listened hard when we first heard the noises but I didn’t think it was MY dog. Ha.

Anyway, we brought my baby girl home. She’s walking fine on all four legs and they said that was fine. They don’t want her walking fast, though, nor is she to get up on furniture, play with other dogs, or jump. The list of don’ts is quite long. Right now Jo is up on the bed. She wanted in there. We put her on her new dog bed in the living room, in front of the heat, and with a blanket over her back and legs. She lay there for a while then got up and went to the bedroom. I tried to coax her into coming back out and she refused. So I helped her up on the bed (she’d’ve hurt herself less if I’d let her do it herself) and she is now sleeping like a rock.


(click for larger version)

She has a bandage on her leg from the tips of her toes to just below the knee. The bandage has to stay on for a week. It is more for compression (they use fluid instead of gas during arthroscopic surgery) than for bandaging the little puncture wounds. In a week, we take her in to get that removed and to have the wounds checked. We’ll also get a chance to talk with the vet about her future and stuff. A week later, we’ll go back to have the stitches removed and to have the range of motion checked. If she is progressing well, we can start with short walks as her rehab.


(click for larger version)

They gave us a cool photo of four images they took during the surgery. My printer is not working at the moment or I’d scan it in and share it. I know, you’re heartbroken, right? The photos show the fluffy remains of the cartilage before, during and after their work. Kinda pretty in a gross sort of way.

Oh, I guess I never said what they’d found during the surgery! What they were looking for was a “pebble in her shoe” in the form of a bit of cartilage that had come loose and was either floating around or had re-adhered in the wrong place. What they found was nothing. There’s no cartilage left except for the fluffy remains. The top of the ankle bone and the bottom of the tibia have nothing left between them. So they cleaned the remains out (it looks fluffy soft but is instead like fluffy sandpaper, slowing wearing down and scraping the bone). So Jo has osteoarthritis in her ankle. She’ll be on anti-inflammatory meds the rest of her life and will have pain. A “pebble in her shoe” would have been a fixable problem with excellent prognosis. There’s no fixing this. At least I know how to care for her since osteoarthritis is one of my main issues. I’ll know that when I am having a high pain day, she probably is, too. How ironically convenient.

bookmark_borderJudging What You See

Posted on by PaulaO

By now, many people have heard of Susan Boyle. If you’ve not, here’s the scoop.

The UK has a reality show called “Britains Got Talent”. It is what American Idol copied. (there’s a whole other essay on the difference in show titles, eh?) Last week, a 47 yr old Scottish woman came out onto the stage. She’s overweight, double chinned, nice brown dress. She is unimpressive in every way. Then, after a short interview of sorts, she starts to sing.

You have to see the video yourself to understand. (The video has had just under 23 MILLION views and the embedded link for it has been removed.)

Susan Boyle blew them away. Out of the water. Even Simon (who I cannot stand) was floored. Why? Because she has an incredible voice wrapped in a real world body. Very little make-up, no eyebrow tweezers (ouch ouch ouch), no plastic surgery. Personally, I don’t care what her body looks like. I’ve got one of those real world bodies, too. Before she went out onto the stage itself, I was assuming this was going to be one of those “why oh why did her friends not tie her down and drug her until this was over?” things. I hate it when people think they have talent when in fact they can’t sing any better than my dogs! I find it painful. Not just my ears, but my spirit as well because people laugh at them rather than offer them help. They are put down and teased. But when Susan Boyle stepped out onto the stage, and I heard her speaking voice from that angle, I knew she could sing so I kept watching. But I had not clue her voice was that damn good.

Another YouTube video is actually a still photo with sound behind it. It is of a charity CD made in 1999 in which Susan Boyle participated. How did anyone not notice her then? Here’s the link to that recording of Susan singing “Cry Me a River”.

Do a YouTube search for her name and you’ll be swamped with videos and copies of interviews. I liked the one with ITN News.

Some articles that have popped up this week discuss the difference between a frumpy woman having a great voice and a frumpy woman who doesn’t. That her frumpiness is Cool and Oh So In only because she can sing. From “The Susan Boyle Phenomenon” article at The New Agenda:

When I first watched the clip, I was disturbed by the audience’s initial eye-rolling and derisive laughter. This, I thought, is why I have so little tolerance for pop culture. The twits were laughing at Susan Boyle for no other reason than that she was not young and not gorgeous. Apparently it was heinously absurd for a not-young, not-gorgeous woman to even haul herself out there on a stage (boo! hiss! climb back in the Kitty Condo with your cats why don’t you!) much less have the sheer monstrous hubris of thinking she could sing.

But of course she can sing, beautifully, and everyone in the world is now thrilled by this reminder that even not-young, not-gorgeous women still have value. If they can sing.

Go, Susan, Go! Me and the other frumpy women in the world will be watching you succeed.

bookmark_borderAmazon Ranking Part 3

Posted on by PaulaO

Got some more info via linkages:

The Guardian (UK): Amazon’s de-ranking is not just a glitch

AfterEllen.com – Amazon’s “Glitch” Myth Debunked

Google News search results for “Amazon Glitch”

Google News search results for “Amazon Rank”

The page for Butch Girls Can Fix Anything now has the book listed in the category of “Books” but nothing else. Whoo Hoo. I feel better now.

bookmark_borderAmazon Ranking Cont.

Posted on by PaulaO

Now that the heat of the ranking crash has died down slightly, it’s time to look through the rubble for truth.

Here’s some genuine journalists giving their reports:

– NPR’s All Things Considered:

– LA Times Jacket Copy:

– LA Times Technology column: Amazon begins to re-rank affected ‘adult’ books; theories swirl

– The Guardian (UK): ‘Gay writing’ falls foul of Amazon sales ranking system

Then there are bloggers/forumites everywhere making comments (including myself). But here are some noteworthy ones with good opinions and/or factual information:

– Dear Author blogger Jane: Amazon Using Category MetaData to Filter Rankings

– Lesbian Fiction Forum (where I hang out) – Amazon De-ranks “Adult” Books (this thread is highly emotional for valid reasons. Be warned there are some tough language, hard opinions, and soap box standing.)

There was, for a few hours, some twit saying he was the one that did this as a hacker. His code has been looked at (he actually said exactly what he allegedly did) and has been deemed faulty. In other words, “weev” didn’t do it. And if “weev” actually did, he was stupider than stupid for admitting it. His original post has disappeared. I think he said he did it as a joke that got blown completely out of proportion.

If anyone knows of any other news article, blogger post, forum thread, whatever, let me know.

bookmark_borderJoella’s Bones

Posted on by PaulaO

For about two months or so, we’ve known Joella has a problem with one or both of her back legs. Joella is very very stoic. We can never really tell if she is in pain or not feeling well unless she somehow communicates that in her special, subtle ways. Over the years, we’ve gotten (kinda) good at reading her. One of the few signs that something was wrong was she would be standing and one of her back legs would shake like mad. The other, and the one that made us realize it was something big, was she started to not want to sit down. Everyone sits prior to getting their meal and Jo was giving us weird signals, telling us she couldn’t do it.

I took her in for her yearly checkup and the vet took a good look at her back legs (and other things as well, of course). Our greatest fear was she had “blown” the cruciate ligament in her knee. She was scheduled for some dental work the next week so while Jo was asleep, they took a bunch of x-rays. Those showed that one knee was quite arthritic looking, but stable. The other one looked better but was really loose, possibly from that ligament. We got an appt. to see a veterinarian orthopedist and that appt. was today.

We really liked Dr. Crouch and felt comfortable with his opinions. He feels it is NOT her knee(s) but one of her ankles. One of the knees has a bone spur like thing that might be causing some limitation, but is not the cause of the pain or the shaking. He feels that there is something wrong like a bit of cartilage is damaged or broken off or something like that. Joella had panosteitis as a teen. It is possible, according to this vet, that this growth problem caused some of the cartilage to not fit correctly.

We then had a long lesson in canine skeletal anatomy. When I was shown what the knee was and what the ankle was, I wasn’t surprised it was the ankle that was bothering her the most. Dogs walk on their toes. Those paw pads? That’s not the bottom of their foot, that’s the padding at the base of their toes. I readily admit to not truly understanding how the human versions relate to the canine ones. It never occurred to me that they walk on their toes. Once I realized that, then the rest fell into place. I had watched how Joella walked and how she was favoring what I now know is her ankle. I also noticed that it was larger than the other.

So next Tuesday, Joella will have arthroscopic surgery on her ankle. They’ll go in there and remove whatever is causing the problem. It could be as simple as a bit broke off and has settled in the wrong place or it could be that part of the ankle will need to be removed. We’ll be able to bring her home the next day. Recovery is simple compared to the one we thought she’d have to have (TPLO). She’ll be really limited for two weeks then can begin to go on short, short walks. We’re looking at about 6-8 weeks total before she is fully recovered. (for the TPLO surgery, this is how long she would have been confined to a crate and not even started rehab!) We will spend the week cleaning up the house some and making room for a dog bed in the living room. We have one that we got for PopCorn but a second one means the other dogs won’t hog it from her. I’m not sure yet what we’ll be doing for night time. Jo sleeps on the bed at my feet. Not sure if this will be allowed or not. Once she is over the surgery, we’ll be evaluating the rest of her leg (and the other one) to see what else is wrong. The vet thinks (and we agree) that repairing the ankle is the most important. With it fixed, any problem not related to it will remain. He believes that she will be fine and we’ll be able to control her pain via arthritis medication.

Below are some anatomy images of a dog’s skeletal system. I got the first image from Wikimedia Commons and the others are just snipped from it. It only shows the skeleton and not the ligaments that go into holding it all together. The vet had some cool models to show us and they included the ligaments. Wow. They were cool. And scary. They (dogs) look so big and strong until broken down into such a defined section. So much could go wrong. One bit not working can screw up the entire area.