work

For a week, I’ve spent my afternoons painting our enclosed garden. When we built it last spring, the wood was new and lovely, but rain and sun have taken a toll on everything, leaving it dingy and dull. And now that we have a custom-built white shed (courtesy of my…

We’re now moving into the sixth month of quarantine, and it’s looking more and more like the world isn’t going to snap back to the way it was before all of this craziness started. I’m starting to think that’s not necessarily a bad thing, because some of the stuff going…

Researchers at Vrije University Amsterdam in the Netherlands are inviting employed people with multiple sclerosis (MS) to take part in an online survey, in the form of three questionnaires spaced over two months, on their working life. This study will investigating potential connections between the perceived severity of MS symptoms, and…

Exactly one year ago on this day of writing, I was down and out. This year, I’m not exactly fighting fit, but the same set of circumstances has pushed me the distance. But it didn’t floor me. OK, OK, I’ll stop with the pugilistic metaphors — it’s not exactly…

Well, it feels like it, at least. I just had the whole of the Christmas-New Year’s period off because of how the dates fell. If you only have to be physically at a work venue one day a week, it will get you like that. If I manage another…

Everything takes so much damn time! I’m strangely working — or at least doing things I purport as work, such as this column. That’s no different than before MS; I still have the inclination to prevaricate or find something inconsequential to ruminate over, like the state of the Turkish…

Have you ever asked yourself, “What am I supposed to do with my life?” or, “How did I get here?” I have asked these questions several times throughout my existence. Those questions regurgitated at the occurrence of every life-altering event. I did not receive a definitive answer that appeased…

The stars sometimes align, even for us atheists. My son was making a fleeting weekend visit from his last year at his university. It’s all we were going to see of him over the Easter period. He’s taking it very seriously and aiming for top grades in math. The week…

Shooting the breeze after work has been part of my professional life for 27 years. We’re all winding down, yes, but I’m actually still working. New ideas, niggles, gossip are thrown together over drinks. True, many of the younger generation’s beverages these days are non-alcoholic, so they tend not…

A national survey in the U.S. revealed that 98% of women newly diagnosed with multiple sclerosis struggle to discuss important personal concerns with their healthcare team.

Costs associated with multiple sclerosis increase as the disease worsens, according to a study of more than 16,000 patients in 16 European countries. The study, “New insights into the burden and costs of multiple sclerosis in Europe,” was published in the Multiple Sclerosis Journal. Researchers obtained their information from patient self-reporting. Patients used the Kurtzke's Expanded Disability Status Scale (EDSS) to assess the severity of their disease. They also reported on their quality of life and their resource use. Patients were divided into three categories. Those with a score between 0 and 3 on the EDSS scale were deemed to have a mild disease. The disease of those with scores of 4 to 6.5 was considered moderate. And the disease of those with scores of 7 to 9 was classified as severe. Patients assessed their health-related quality of life with the EuroQol Five Dimensions questionnaire. The average age of the 16,808 participants was 51 and a half years old. The work capacity of MS patients dropped from 82 percent of a healthy person's to 8 percent as the severity of the disease increased, researchers said. Patients' quality of life scores were about the same as those seen in the general population when they had a mild disease. But they plunged to less than zero when their disease became severe. The mean annual cost of having a mild form of MS was 22,800 euros, or around $26,300, researchers reported. The cost of having a moderate disease was 37,100 euros, or about $42,800. And the cost of a severe disease was 57,500 euros, or $66,340. Healthcare accounted for 68 percent of total costs with a mild disease, 47 percent with a moderate disease, and 26 percent for a severe disease. "Costs are dependent on the availability, use and price of services and on disease severity," the researchers wrote. "Costs were related to disease severity" in all countries "and were dominated by production losses, non-healthcare costs and DMTs," or disease-modifying therapies. Those therapies may be a key reason why the highest percentage of healthcare costs occurred in patients with a mild disease, researchers said. Doctors prescribe a lot of DMTs to this group. Other factors related to the high percentage were that many patients with mild diseases are still able to work -- meaning they incur fewer production-loss costs -- and this group requires fewer community services. As MS becomes more severe, patients' production losses rise, and they use more community services. "The intensity of healthcare service use varied widely across the countries," researchers wrote. "This reflects differences in healthcare organization, medical traditions, ease of access and – most importantly – availability of given services." Researchers also assessed patients' levels of fatigue and cognitive difficulties. Ninety-five percent reported fatigue, and 71 percent cognitive difficulties. Fatigue and cognitive difficulties had significant impacts on quality of life scores, researchers said.

Multiple sclerosis patients taking Tecfidera, or dimethyl fumarate, were more productive at work than those on Copaxone or beta-interferon therapies, according to a study. Tecfidera also increased patients’ quality of life, researchers said. The study covered patients with relapsing-remitting multiple sclerosis, or RRMS. The four beta-interferon treatments were Avonex, Betaseron, Rebif,…