Concussion is Brain Injury

BiblioCrunch and Twitter

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When having trouble with a company, go to Twitter. So it was with BiblioCrunch when I had a tiny problem: no response to my support request email within the 24-hour window they had promised on their site. I tweeted my plaint and expected nada, for it was on Saturday, usually when all but the largest companies are off.

Within a very few minutes, I received a reply — an apology and a request to email her directly. And I received a DM with the email address and another apology. I hopped to it and sent an email. But as swiftly as I emailed, they were swifter in reply and in helping me sort out my problem.

And then they went further: they offered to post my book cover and links on their Facebook and Pinterest pages, and they had noticed my book launch tweets for my soon-to-be-released book Concussion Is Brain Injury and offered to send some tweets my way too. Now that's a company that understands customer service! No wonder they sponsored National Novel Writing Month and were one of the NaNoWriMo winner goodies (yup, I had another winning November; though for the first time ever, I'm not sure what I'm going to do with this novel). I now look forward to using their site!

 

Brain Power

New COTA Case Manager, A Total 180

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Boy, did I fall down on the job. I thought I’d written a final follow-up post on my case manager saga. I hadn’t! Oops.

In a nutshell: a total 180.

I met with my new case manager in the afternoon. He spent one and a half hours familiarizing himself with my needs, writing down a numbered list of my top ones, determining which ones to begin with – he said top three, I said top four, he agreed – and then ensuring he knew how best to communicate with me (email or phone) and I knew how to get in touch with him. He also set up our next time to meet, and he didn’t cancel it later.

He left at 4:30 pm.

By 9:30 am the next day, I had two emails in my inbox waiting for me. He’d already begun on my most urgent needs and had both answers and follow-up questions for me. Wow! For the rest of the week, he kept in constant touch. I received more emails from him in two days than I did from my previous case manager in two years. But then she didn’t email me a whole lot; she preferred to call me. Even so, he emailed me more often than she called – because he was acting on my case.

In one month, he has provided specific (not general one-size-fits-all) answers on subsidy questions, determined that CCAC is supposed to act on my behalf on one matter, filled in forms, looked up services that I’d heard about, showed he was not averse to learning, made phone calls on my behalf, filled in forms. What a relief to have someone fill in forms for me. It’s bad enough when you’re healthy and in unfamiliar territory, but when you have reading problems, never mind other cognition issues, you become confused, stuck, spinning your eyes as you try to slog your way through a multi-page bureaucratic form. Applying for financial services is easier!

He is also not averse to computers. He even has his own PDA. And apparently COTA is considering upgrading the computers they give to their case managers. Yes, COTA’s case managers have computers. I’ve even seen one of the ones they issued awhile ago. Small and slow but works. So all that grief I got from the COTA boss and the 19th century methods of my previous case manager was BS.

But they’re behind me. The burden has been lifted. I feel lighter, freer, relieved. COTA is no longer draining my energy. Instead my new case manager has infused some. That’s the difference a good computer-familiar case manager who isn’t afraid to learn can make.

Internet and Computers

Quitting Squidoo for Violating my Terms of Service

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The Error message reads: “Whoops! No publishing allowed. This lens is currently locked for a violation of our Terms of Service, as per the email we sent you. You’re welcome to a) Grab your content and take it elsewhere, if you’d rather not continue with Squidoo or b) Review your content and make edits here in the Workshop to improve the lens. But you won’t be able to Publish the lens live until you can demonstrate that the violation has been addressed. Thanks.

I wrote this how-to lens on autographing books for authors almost four years ago. Squidoo decided three days before Christmas 2011 (when book sales spike) that my article was  — pick one, your guess, they won’t tell, shhhh — pornographic; contained profanity; spammy (guess too many copies of Lifeliner in my pic); something they couldn’t support cause, you know, authors autographing books for readers is so … well, words fail me; a “doorway” lens  to affiliate programs like promoting authors autographing their own books; unoriginal (all those hours I spent writing and polishing was just, well, meh); article spinning (whatever the heck that is, but if I don’t know what it means then I must’ve done it, eh?); and plagiarism.

I’ve been down the false accusation of plagiarism road with Squidoo before.

They sent a nice note saying sorry, it was a “false positive” after I found the plagiarist of my article that they blocked last May. They wrote that they would greenlight it so it wouldn’t happen again, but they didn’t think to greenlight the author, namely me. They seem to have a default stance that Squidoo authors plagiarize and so no point telling Squidoo authors when their work is plagiarized, just cut out the articles. Some site.

Squidoo also wrote in their email to me dated 22 December 2011:

We aim to support high-quality, original and useful lifestyle content that real readers will be glad to land on.”

Yes I can see how comments like these most recent ones would mean readers were not glad to land on it:

“i like this..” Oct 24, 2010 5:14 pm

“I will release my first book and it is all about my experiences as a mystery shopper. I found this site very informative and I am so excited to sign my book to someone who will really appreciate it. Thanks for the signing guides and more power” MysterySh0pper, Dec 11, 2010 6:32 am

“Thanks for the ideas….my first book signing is coming up in a few days!! http://map-thenovel.com” nitronarc, Feb 21, 2011 9:23 pm

“A lens about how to autograph a book: now I’ve seen it all! I am impressed with the research you did! (I’ve never had to autograph a book, but I have had to autograph the CD copy of an ebook!)” TravelingRae, Jun 18, 2011 12:16 am

This week, after I finished revising my novel and finally had the energy to deal with this company and do their work for them, I searched for plagiarized words from my autographing article, and it looks like it was copied elsewhere then possibly taken down or made invisible. Although Google shows other sites as having plagiarized my article, the sites themselves no longer show it, as far as I can tell.

Violations of my copyright are the only thing important to me.

Then I also noticed all my Squidoo lenses on installing and using Ubuntu were taken down. I can’t be bothered yelling at this stupid company again. If it doesn’t have the ability to know which writers are original and to see that it had screwed up before with the same writer, it’s not worth the effort to tell them. I know I said I was going to take down my Squidoo account last time they blasted me with their spraying figure-out-which-term-you-violated-then-maybe-we’ll-talk gun. But didn’t. This time I am.

There may be orphaned links on my website to my old Squidoo lenses once I’ve cancelled my account. Please let me know if you find any.

Last time, they only made nice because I blasted them back and reprimanded my copyright violator — thanks for the help Squidoo in telling me about them and helping me demand they take the plagiarized copy down, not — but I was mollified. This time, I don’t see why again I have to be treated as guilty until innocent. If they default to that position, then they have a problem with their contributors. From telecoms to Squidoo, I’ve had enough of behemoth companies banging their weight around. I quit. Writers looking for autographing advice — and my other former Squidoo essays — can come straight to my own website, thank you very much.

"We're lucky to have you around."
Essay

CBC’s Marketplace Posits A Theory About COLD-FX

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Bad science: have a pet theory, manipulate the results to suit it.

Marketplace mimicked bad science well this past week. Their theory: COLD-FX does not work. Their results: don’t fit.

A little manipulation was in order using panning camerawork, fun quizzes, people-on-the-street interviews journalists are addicted to, jerky camerawork as they follow some poor target, lowered voice, clever camera cuts, grainy footage, undercover-type footage, selective submission of papers for scientific analysis (truly, have doctors and researchers not yet cottoned on to how journalists manipulate them?), highlight preferred statements over blasphemous one, present conclusions as mind-blowing, etc., etc.

Well, I don’t like it when my health is threatened, and so it’s time for a little fun. After all CBC’s Marketplace can’t hog it all.

But first: I take COLD-FX, have done for several years, as a preventative measure. I started because since my brain injury, I’ve become quite susceptible to colds; worse it takes me a month to recover from one. Going from cold to cold while trying to cope with the fallout of brain injury is extremely unpleasant. I took Flonase for awhile, but the side effects aren’t great. COLD-FX allowed me to stop the Flonase and for the first time in ages, I went a whole year last year without one respiratory infection. Hallelujah! I take COLD-FX as a preventative or prophylaxis because if I took it immediately in response to a scratchy throat, my body would still take weeks to recover no matter how efficacious COLD-FX is because that’s how it rolls these days with any illness I contract. I figure not getting one in the first place is better.

And so in the cause of health, I brave watching Marketplace. I haven’t watched it in years, ever since it went from trustworthy straightforward journalism to the gotcha kind. The old Marketplace may’ve been staid, but I trusted and respected it. New Marketplace makes me roll my eyes and switch the channel.

Anywhoo…

I sit back and watch … a mom-child convention. Huh? I don’t know what a COLD-FX luncheon for hockey moms has to do with a market report on a product. But it sure looks suspicious! Marketplace has set the mood and begins to reel us in with choice words.

Brilliant marketing idea” — sounds like COLD-FX was all about marketing, not about helping people fight the bane of our lives: colds. (Let rolling eyes commence.)

take a natural product, ginseng and get some science behind it.” — tsk, tsk, imagine makers of a natural health product standardizing their product and using the scientific method. What will they do next? Conduct and publish more than one study?

just like a pharmaceutical drug” — the nerve!

“research pays off” — damn, it sounds dirty, having solid research backing their product.

Marketplace then capitalizes on something no lay person is going to know, that Health Canada takes years — and years and years — to approve new products, and it isn’t always for kosher reasons either. Imagine a company that decides it’s had enough of Health Canada’s notorious foot dragging and, gasp, puts on political pressure to light a fire under the bureaucrats to actually work on it. Tut, tut. Bet all companies wish they could do that. What would be better though is if the politicians reformed Health Canada to approve — or reject — new products in a timely manner based solely on science.

Oh look, now we have the person-on-the-street interviews. It’s interactive, snazzy, and provides a we’re-here-for-you backdrop to the “expert” interview. And here’s where the manipulations get awesome.

Erica Johnson asks their chosen expert from a prestigious Toronto hospital about the claim for immediate relief for colds and flu. Erica asks Dr. Andreas Laupacis, a general internal medicine specialist: “Is there any research that’s been done showing that Cold-FX helps stop colds in their tracks?

He answers, the camera moving and panning, weaving and zooming on him, on her, on both: “Certainly all the [camera cut to Andreas only] clinical trials I’ve looked at there’s no such [camera cut to Erica only] evidence. They’ve studied patients with [camera cut to Andreas only] Cold-FX to prevent flus. I didn’t see any studies to show whether Cold-FX works or not in people that notice a flu coming and then take Cold-FX.

Erica: “That’s right. The pitch: to stop a cold in its tracks.

Uh, no, not right, he said “flu.” You Erica said “cold.” Two different viruses; two different topics. Just like the flu vaccine has zero effect on a cold and some effect in preventing flu, any product that can prevent a cold may not necessarily prevent the flu. Your expert, Marketplace, did not say COLD-FX does not prevent colds. He said flu, and only flu. (That’s probably why there were separate studies for colds and flu, more below.)

But a little repetition by Erica nicely masks that distinction. Gotta admire the manipulation.

What the heck did the Health Canada letter to Marketplace actually say? A few words pulled out say nothing and cannot be relied upon. I mean if movie companies can pull out glowing excerpts from bad reviews… If you want to know, check out their website for Health Canada’s statements (more below).

On to the “undercover” work! The better to make COLD-FX look like a big, fat fraud. Jerky camera work. Blurred faces. Closed captioning of what pharmacists say. The pitch: “Remember: there’s no published evidence for [taking COLD-FX for immediate relief].

For some reason, I keep hearing the Twilight Zone theme.

More experts! This time Marketplace sends a select list of published articles on COLD-FX for analysis by Andrew Lane Ilersich, MSc, BScPhm, RPh at the Univeristy of Toronto. But it’s kind of boring just saying what they said. Quiz time! Grand revelation after each question and answer session! But did the analysis really say what Marketplace asserts it said?

As Syd Baumel wrote on the Marketplace website: “To begin with, the scientist didn’t do an independent search of the literature in case there were other studies of Cold FX out there. He only analyzed the four submitted to him by Marketplace.”

Andrew Lane Ilersich, MSc, BScPhm, RPh did put in his short summary headline of the meta-analysislimited scope.” (More below.)

COLD-FX has ten citations and it looks like about eight clinical trials listed on its website. Cherry picking is sweet.

Baumel again: “Cold FX enjoyed a 15% reduction in cold frequency compared to those who took a placebo. Very modest effect, but statistically significant. To the individual user, this suggests that if you take Cold FX, it’ll spare you from getting a cold about one time out of 7.

I personally didn’t understand this whole “once in seventeen years” of taking COLD-FX assertion on Marketplace. I’ve never heard statistics interpreted that way before, not in stats classes or research I participated in or studies I’ve read. Fifteen percent is one in seven and would be a standard way of putting it.

Anyway, how many people would bother reading the entire meta-analysis (PDF) to get the correct picture? Don’t your eyes glaze over at the very thought? So it’s pretty safe for Marketplace to reproduce only one paragraph from the plain-language summary and not the paragraph that states clearly that the studies “demonstrated a reduction in the risk of getting a cold.” It’s that old pull out one statement, ignore the other trick to make it sound like it’s saying what you want to. Here’s the entire summary:

“COLD-FX is effective for preventing colds in adults. Research findings from 4 experimental studies (randomized controlled trials) that compared COLD-FX to a placebo (dummy treatment) including over 1000 adults demonstrated a reduction in the risk of getting a cold. In all studies, the COLD-FX was used in a dose of 400mg/day. The duration of treatment ranged from between 2 months and 6 months.

Relative to placebo, the risk of getting a cold was reduced by about 15% when COLD-FX was used. The absolute risk reduction was about 6% (this means that if the overall chance of getting a cold is, for example, 50%, then taking COLD-FX reduces it to 44%). Altogether, 17 people need to be treated to prevent 1 person from getting a cold.

For those who contracted a cold, there was insufficient evidence that the duration or severity was reduced.

This analysis did not explore the effects of age, dose and/or duration of therapy on the effectiveness of COLD-FX, nor the cost-effectiveness of COLD-FX.”

How interesting: the analysis did not explore effects of duration of therapy or dosage taken, one or both of which would have large effects on COLD-FX’s efficacy, one would surmise.

Onto the gotcha journalism CBC enjoys. It makes their target look like they’re up to no good, even when s/he has a clear, legal reason for not answering their in-their-face questions (I mean, what journalist doesn’t know how lawyers make people shut up, even for the silliest of reasons? The buy-out seems to be the reason here. Oh, but perhaps journalists figure most people wouldn’t know how effective lawyers are at silencing people? I feel for target Shan, caught between a lawyer and a journalist. Gak.).

So Erica asks the big question. And Jacqueline Shan answers: “[I was just talking about Cold-FX inside.]

Erica: “We didn’t hear you talk inside.” Really? They were able to track her down but were unable to make it in time for her talk?

Shan: “Our company was bought by Valeant. So I’m not allowed to make any public statement… You need to contact the company.” Pretty clear to me. It must suck for a journalist to be stonewalled by a large company, so take it out on an individual instead, eh?

Onward!

Oh hey, the lowered voice method! A lowered voice hints at nefarious doings, hints there was a bacteria cover-up even though Health Canada said there is no health risk in its last statement to Marketplace.

Marketplace quotes: “Based on currently available information, the presence of E. hermannii in a finished natural health product would be unacceptable.” Health Canada clarifies:

“Our earlier language was perhaps too black and white and did not accurately convey the science behind acceptable levels

After laboratory assessments were conducted by Health Canada scientists of the product on the Canadian marketplace, a low level of the bacteria Escherichia hermannii was found. Following a thorough assessment by Health Canada Scientists, it was determined that the level found presented the lowest risk to health and safety of Canadians [my emphasis] and, as such, no recall was initiated.

It is important to note that all health products have benefits and risks. When health products are found on the market that pose an unacceptable level of risk to health, Health Canada takes appropriate steps to mitigate and manage these risks.”

To be sure, I don’t recall any mass deaths or hospitalizations from COLD-FX-related E. coli contamination back in 2008 or 2009. Do you? But who needs to prove a dangerous bacteria contamination when all you have to say is “bacteria” to spring suspicion and fear into every viewer’s breast?

I feel for Marketplace. They really had to work hard to prove their theory about this product, going here and there, running all over the planet, from city to city, from expert to expert, using cameras that produced grainy pictures in China while using excellent ones for the scenes in which Erica appears.

On to the good stuff: an interview with Don Cherry.

Love the Don Cherry interview: one science-illiterate person talking to another, talking about two totally different things. One about immediate relief, the other about prevention. Neither notices. You don’t see this in the Markeplace piece, but in the extended Cherry piece I’ve embedded above.

Cherry begins by saying he doesn’t work for them anymore and he’s a little ticked off with COLD-FX, the company. Yet, get this, he still takes four COLD-FX capsules a day and ten a day, like the hockey players, if he feels a cold coming on. He relates in the extended Cherry piece that after a lifetime of being plagued by colds, after he began taking COLD-FX, he’s had just three colds in eight years. I don’t think anyone, least of all, Marketplace, or anything, like being fired, is going to pry the product out of his hands. He likes being cold-free too much. Me too, actually.

In all the hoo-hah, Marketplace forgot to mention an important point: “in the United States alone at least 1 billion colds per year have been reported” (from Predy et al, 2005 CMAJ article) with each person catching on average two to six colds. We know each cold costs several days of lost work or reduced productivity, never mind that it makes one feel lousier than hell. This is not peanuts. Dissing an effective remedy for colds harms public health.

The meta-analysis they had done listed four studies. I took a gander at them. (Note: in the meta-analysis, they were not identified in proper reference format, but I’m pretty sure I found the ones looked at as there can’t be more than one in the same year by the same authors on the same topic.)

2004 study: Elderly nursing home residents, 90 percent of whom had received the flu vaccine, had fewer cases of flu when taking COLD-FX for 8 weeks and 12, that is, 1 of 97 versus 7 of 101 who took a placebo. Taking COLD-FX reduced the risk of a fragile, elderly person from catching flu by 89 percent. By the way, flu kills the elderly.

2005 peer-reviewed study in CMAJ (Canadian Medical Association Journal): Healthy adults who took the same dose as in the 2004 study but for 4 months caught 0.68 colds versus 0.95 for placebo and also only 10 percent caught more than one cold while 22.8 percent in the placebo group got multiple colds.

“These results are similar to those reported for zanamivir and oseltamivir therapy. These antiviral agents have been reported to reduce the severity and duration of illness by 1.5-2.5 days. In comparison, the ginseng extract treatment was found to reduce the duration of a cold by 2.4 days.”

2006 study: A variation of the 2004 study, in which after two months of use, COLD-FX reduced the risk of contracting a respiratory infection by almost half (48 percent) and the duration by 55 percent. I assume the infections were colds because they state that there was no influenza in the community during the study.

2011 study: A larger version of the 2005 study.

“data indicate that CVT-E002 at a dose of 400 mg/day or 800 mg/day is safe and well tolerated and results in a reduction in the number, severity, and duration of Jackson-confirmed URIs (upper respiratory tract infections) when taken as seasonal prophylaxis by healthy, community-dwelling older adults. Further studies with larger sample size are warranted to determine possible dose-related effects of CVT-E002.”

Ilersich concluded: “In summary, these results support the effectiveness of COLD-FX for preventing colds. There is insufficient evidence of a reduction in severity or duration of colds.Insufficient evidence is science-speak for do more work, we don’t know one way or the other yet.

By the end of the twenty-two-odd minutes, Marketplace’s entire piece, when read between the lines and engendering Herculean effort not to be distracted by the bells and whistles, boils down to COLD-FX prevents colds. The claim it provides immediate relief needs further study; the China connection is no different than every other product we buy (have you checked where your frozen veggies are grown lately?), thus is not COLD-FX specific and is a separate topic; the bacterial contamination is old news and a non-starter. In other words, Marketplace told its alert viewers to take COLD-FX daily if you want to prevent colds.

Perhaps that’s why it ends its piece in the bathroom — with a shot of Erica and another expert washing their hands with soap, claiming that it’s more effective than COLD-FX. Washing hands with soap is effective in reducing colds. But what’s their published evidence proving their theory right? Where’s the double-blind randomized trial that compares the two methods side-by-side in reducing severity, duration, and frequency of infections, one for colds, one for flu?

 

——————-

References:

McElhaney JE, Gravenstein S, Cole SK, Davidson E, O’neill D, Petitjean S, Rumble B, Shan JJ. “A placebo-controlled trial of a proprietary extract of North American ginseng (CVT-E002) to prevent acute respiratory illness in institutionalized older adults.” J Am Geriatr Soc. 2004 Jan;52(1):13-9. Erratum in: J Am Geriatr Soc. 2004 May;52(5):following 856.

Gerald N. Predy, Vinti Goel, Ray Lovlin, Allan Donner, Larry Stitt, Tapan K. Basu. “Efficacy of an extract of North American ginseng containing poly-furanosyl-pyranosyl-saccharides for preventing upper respiratory tract infections: a randomized controlled trial.” CMAJ October 25, 2005 vol. 173 no. 9.

McElhaney JE, Goel V, Toane B, Hooten J, Shan JJ. “Efficacy of COLD-fX in the prevention of respiratory symptoms in community-dwelling adults: a randomized, double-blinded, placebo controlled trial.” J Altern Complement Med. 2006 Mar;12(2):153-7.

Janet E. McElhaney, Andrew E. Simor, Shelly McNeil, and Gerald N. Predy, “Efficacy and Safety of CVT-E002, a Proprietary Extract of Panax quinquefolius in the Prevention of Respiratory Infections in Influenza-Vaccinated Community-Dwelling Adults: A Multicenter, Randomized, Double-Blind, and Placebo-Controlled Trial,” Influenza Research and Treatment, vol. 2011, Article ID 759051, 8 pages, 2011. doi:10.1155/2011/759051

Brain Health

COTA Case Manager, the Saga Continues

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Update to Case Management drama:

I met with my case manager from COTA (see previous post for the story so far). I told her to get to it; I didn’t even give her a chance for her usual draining chit-chat. I needed my energy to get through the session with her; thankfully my moral anger kicked in to lend me energy and thinking power. I first pried the phone number of the Homemaking service from her by asking her point-blank for it. Later, she justified not giving me the phone number two months ago — she didn’t think she had to give it to me because I already had it, because she thought in that vague way of hers that I had already received help earlier from them. I’m amazed my eyeballs didn’t fall onto the table. I demanded to know why I’d ask for homemaking help if I’d already received it? She repeated she thought I had it. She was thinking of the student who helped me for a few months before quitting abruptly. Not exactly a provincial Homemaking program.

Anyway, after I got the phone number, I asked her for all the information she had gathered to date. Of my list of items, she had three done — sort of. She had a phone number for one; 311 for the second; an information sheet from the City of Toronto for the third. (And, oh yeah, an application for the funding help I’d been receiving for years.) It took her since October 18 to gather that. She said she had to research them on the Internet, that she doesn’t know about these Toronto services.

Her territory is the City of Toronto. She’s been working in this job for at least two years, but she didn’t tell me precisely how many. I do not have esoteric needs.

She also doesn’t know what the Rotary Club offers, which I’ve been told by two doctors and a therapist should’ve been contacted on my behalf for at least one item on my list that she said there was no help for.

As I mentioned in my previous post, she had totally gotten some of my needs wrong. But she denied it. She insisted that she’d gotten my list all correct and hadn’t asked me to repeat any of my needs in a follow-up phone call. She insisted that she had listened (the implication being I’d misspoken — imagine, me, the “articulate one” telling her I needed something I’d been receiving for years). When I informed her of her error last week and what she should’ve been looking into, she didn’t leap to correct it because she “wasn’t at work.” Apparently knowing she was meeting me today was not enough incentive to make things right.

She constantly apologised: “I’m sorry you feel this way.” Would you feel apologised to with those words? Nope, me neither. I finally told her to quit it, that if she was truly apologetic, truly understood how much she’d screwed up, she’d say she was sorry for screwing up. I then lectured her on ehealth and computerization. I have no idea if she took in anything I said. She just sat there. She did intimate at one point she didn’t want to carry a laptop around on the TTC. Good thing all the students and biz folk I see on the subway with their laptops don’t agree with her. They’d get much less done and make errors, as well as spending twice the time on the same task, transcribing pen and paper to computer when they got home or to work. I rhymed off a list of lighter computer devices she could carry with password protection. It made me wonder if any of these people pay attention to the world-shattering Apple launches.

I called her boss. She said she’d talk to the case manager and get back to me. CCAC did not react like this when I called about a disrespectful OT; they believed me — they didn’t say they had to talk to the OT as if to imply they needed verification — and immediately looked for a replacement.

After she left, I needed  a nap. But I stopped myself because I need to sleep at night. However, the rest of my day has been disrupted because as a person with a brain injury, it’s very difficult to refocus. I went from anger to weariness to distractedness to upsetedness. That’s when I called my MPP to see if I could be un-split. Only people with brain injuries — the folks who by the very nature of their injury need things to be simple — are split between COTA and CCAC. As I understand it, no one else is. People with cancer get 100% of their help, including case management, from CCAC. I’m ready to cry over this injustice and unnecessary bureaucracy. I’m hoping by writing this, by venting, I can get back to my day.

Update 4 Jan 2012:

The case manager’s boss called after speaking with the case manager. She wanted to discuss some issues. She wanted to persuade me to continue on with my case manager and was wanting to work things out so that could happen. I cut her off. I wasn’t working with that case manager, and I didn’t want any contact by any means with her. She tried again, and I cut her off again. So then she said there were issues that had to be discussed. There is nothing more upsetting than talking to someone with a sweet, gentle voice who implacably talks to the patient as if they are a problem, and in this case, will not meet the patient’s request for a new case manager unless the patient gets abrupt and brusque and refuses to discuss working with the problem case manager.

She began with miscommunication. If I wasn’t so upset — and one thing she knows as everyone in the brain injury community knows is that people with brain injuries have labile emotions, you never know what you’re going to get — I’d have laughed. She was talking to the person labelled articulate. I am always and immediately labelled as someone who communicates well by every therapist, every rehab person, every psychologist and doctor I’ve ever seen right from 2000 on. Any miscommunication was on my case manager’s part, but by wanting to discuss this with me as an issue, she was implying that my case manager had listened well and got down all the information correctly, thus it was me who had not communicated my needs well, who was the problem. I told her I had no trouble working with anyone else and in communicating my needs to anyone else; everyone but my case manager knows what they are.

She moved on to the issue of computers that my case manager had said I talked about. Basically, if I expected their case managers to have computers or iPhones, I should consider not receiving service from them. They don’t have funding, she said. (Why would a therapist need an agency to fund their own smartphone anyway? In today’s society, every professional should have one regardless, but apparently in the eyes of OTs, not.) Yet my very bringing it up in the first place, then suggesting we discuss it outside of the case manager issue was seen as a reason for me not to receive service from COTA. She told me I have until next week to think about it, to think about whether I wanted to receive service from them or not when she would call me back — next week because the case managers weren’t in the office (not at work?) this week and she wouldn’t be able to find out who’s available to take on my case until they come into the office next week, not that she’s hopeful there would be someone available.

It seems to me that by using that nicest-possible-we’ll-talk-to-you-when-you’re-less-upset voice and suggesting I need a week to think about it, she is threatening to remove services from me if I don’t behave. It isn’t about me having a choice, for COTA is the only publicly funded entity that provides case management services to people with brain injuries, and she knows it. Imagine what effect this would have on an ill or very injured person? They would comply and drop their request. They would put up with bad health care for fear of even that being taken away. And they would not have their needs met plus have their health worsened through the stress of thoughts of abandonment as well as the stress of being forced through gentle, implacable persuasion, to work with someone who doesn’t listen and doesn’t meet their needs.

Update 11 Jan 2012:

On Monday, the COTA case manager boss called and gave me the name of my new case manager. That’s it. Short and sweet. I was so astonished. And relieved. The only strange thing was her reaction to me asking her to spell out the new case manager’s name. I have a hard time understanding names over the phone, and so I’ve gotten into the habit of asking people to spell them out. I usually get an uh, well, never-had-to-spell-out-a-simple J-A-N-E before kind of response. But they do spell it out. She wouldn’t. She spelled out the case manager’s last name but neither spelled out the first name nor repeated it. You’d think someone working in the area of brain injury would be familiar with auditory processing or hearing problems and would not only ensure a clear phone line, but also enunciate names clearly and repeat them slowly. Sheesh.

The new case manager called me today to make an appointment to see me and right off the bat spoke slowly (not loudly, which is what people usually do when asked to speak slowly, much to my ear’s distress) and enunciated every word. It was a bit irritating, but then I told myself I had no — zero, zip, nada — problems understanding every word, including the name. He repeated his name at the end of our conversation without being asked to. How unusual after my recent experience. Hopefully, auspicious.

Internet and Computers

Greener Families Does the Right Thing: Takes Down Plagiarized Article

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I’d steeled myself to take the next step in my salvo against the ones who’d plagiarized my chocolate article, especially as I hadn’t received an email of apology or compliance. I went to the page and…

Greener Families Page for Chocolate Article Taken Down Cropped 20 May 2011

Well, isn’t that a surprise! First Squidoo does the right thing and restores my deleted article and now Greener Families does the right thing and deletes their illegal copy of it.

Two lessons I’ve learnt:

1. Don’t give up when you see injustice done: Write! Write the transgressors, use civil language, include sentences that tell them you can prove your claim, and copy legal language from websites who’ve gone through the same steps as you.

2. People in the wrong don’t apologise, don’t acknowledge they did wrong, and don’t let you know when they’ve rectified the situation. With people like Squidoo or Greener Families, it doesn’t matter really, other than it’s annoying, because I don’t have a personal relationship with them. But when it happens in a personal relationship, that relationship is doomed to superficiality at best and will likely fade away. For when the transgressor fails to admit wrong, apologise, and repent (change their mind, way of doing things), then the trangressed is likely to hold them at harm’s length even if s/he shows a smiling face to the transgressor. Don’t fool yourself. Being a coward and not apologising (in the hopes it’ll all go away and why can’t we all make nice) isn’t going to fix anything and will ruin what relationship you have left.

Now I can get back to my regularly scheduled programming. Yay!

Internet and Computers

Fighting Plagiarism and My Squidoo Article Restored

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As I blogged on the weekend, an article I had written back in the 1990s and had updated for publication on Squidoo.com, had been plagiarized by greenerfamilies.com. I immediately used Greener Families’s contact form to tell them to take it down. As of this writing, I have not heard anything from them.

So now that I’m feeling more human, I’ve followed the advice of two excellent articles on what to do when someone or some thing has plagiarized your work.

DevTopics in How to File a DMCA Complaint talks about splogs as an introduction on how to fight back. Until I read this post, I’d never heard of splogs before:

A splog or “spam blog” is a blog that steals content from other web sites, then aggregates and republishes the content on its own blog.”

I don’t know if greenerfamilies.com is a splog or not, but it is a strange site in that there are no last names and there is no contact information. Yet the site presents itself as a kind of company or organization that will help make people healthier and greener, a company that has professionals behind it. Legitimate companies that sell products to improve people’s lives have all sorts of information about themselves right on their websites. They don’t hide.

I also read Lorelle on WordPress’s article What Do You Do When Someone Steals Your Content. She has excellent tips on how to find out who is behind a website or blog and how to find contact  information.

Whois Search for GreenerFamilies 17 May 2011

The apparent owner of greenerfamilies.com also owns 33 other domains. That’s an awful lot of domains for a self-described doctor with a business. On greenerfamilies.com’s About page, John describes himself as a former Olympic athlete and a worldwide lecturer. Seems to me that someone with that kind of pedigree would not be hiding his last name. The photos look kind of, uh, generic for a couple of professionals.

About GreenerFamilies Cropped 17 May 2011

Using the email information DomainTools spat out, and using the templates both DevTopic and Lorelle on WordPress provided, I emailed a cease and desist message to the two email addresses I could find, namely jpahau@yahoo.com and registrars@ecommerce.com. I gave them until Friday for them to respond.

This is a Notice of Infringement as authorized in § 512(c) of the U.S. Copyright Law under the Digital Millennium Copyright Act (DMCA). This is to advise you that you are using copyrighted and protected material on your website/blog. Your illegal use of "Fat into Fuel" article at http://www.greenerfamilies.com/?p=55 is originally from my Squidoo website page called "A Nibble of Chocolate, Part Three" at http://www.squidoo.com/chocolatepartthree. This is original content, and I am the author and copyright holder. Use of copyright protected material without permission is illegal under U.S. and Canadian copyright laws.

Please remove this article immediately or we will file an official complaint with the U.S. Copyright Office, FeedBurner, and Google, Inc. Google’s response may include removing or disabling access to material claimed to be the subject of infringing activity and/or terminating subscribers.
I expect a response by Friday, May 20, 2011 to this issue. Thank you for your immediate action on this matter.

Shireen Jeejeebhoy

Meanwhile, I discovered through writing this email that – although they had not informed me — Squidoo had restored the chocolate article that they had locked out from the public and were about the delete, the same article that greenerfamilies.com had plagiarized. Was I ever surprised! Sometimes it pays to speak up. Sometimes there is a measure of justice.

Lifeliner

Last Day Lifeliner eBook on Sale!

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To finish the old year with a flourish, I have put Lifeliner on sale. Only $2.99! An inspirational story about a woman who suffered the catastrophic loss of all her bowels but whooped it up for another 20 years without eating a morsel, it is gripping readers all around the world. It will light up your New Year with Judy’s zest for life.

Click on the link, choose your preferred eBook format of choice, enter coupon code MS55X, and you’ll be immersed in this true life story in no time! http://bit.ly/aNroTb

Or if you’re an Amazon buff, check out Lifeliner on Amazon in both print and Kindle versions. Bonus: now you can lend your copy of Lifeliner to anyone with an eReader or iPad.

If you need help putting the eBook on your iPad, iPhone, or iPod Touch, see my previous posts at http://jeejeebhoy.ca.