Thankgiving Day has passed. You are invited to read about a few things for which I am thankful.
My little brother turned 36, so he's practically almost 40 now. lol.
I spent the week at Bethany Beach in Delaware, relaxing in a house owned by one of my piano families. Thank you Shannon.
What a luxury to be in a home large enough to sleep a dozen individuals comfortably and out-fitted with an elevator. Spacious, organized, quiet, and calm. Very good for the soul.
On Wednesday, my Sweetie and I walked down to the beach and looked for unusual shells, sanddollars, sea glass, smooth rocks, etc. We didn't find anything quite as unique as the horseshoe crab shell which was sitting on the beach house porch or the beautiful array of seaglass sitting in the family's bookcase.
We did find some interesting specimens and the most beautiful (when wet) black rocks. It was great fun watching the tide come in, with the increasingly large waves crashing before reaching the shoreline.
The day before, when we drove to Rehobeth Beach, we saw several surfers and boogieboarders catching some waves. Oooooh...cold!!!
Walking in the sand really put my legs to the test. I tried to stay on the harder, flatter sand but of course that was difficult to do. I got so very tired and the walk back to the beach house was excruciating. Each step was like hauling 100 lbs through quicksand.
When we reached the street, I found a bench to sit upon and wait for some feeling to return to my thighs, then my knees, and finally my calves (sorta). My Sweetie offered to go get the car, but I thought that walking on a flat surface for a few blocks might help relax the muscles. It did somewhat.
Waking up on Thursday, my calves were so incredibly spastic. If I hadn't experienced similar intense cramps before, I would have been crying from extreme pain and frustration. But being an experienced and knowledgeable MSer, I took it all in stride (while taking some extra Baclofen and trying gentle stretches).
The legs decided to cooperate enough to carry me, with my Sweetie, to enjoy a seafood Thanksgiving dinner in Ocean City. Even today those calves are still very sore and stiff, but it was well worth it to walk along the beach so close to the waves, enjoying the solitude and calm.
I think I'd choose to spend the week of Thanksgiving at the beach again in the future. That was very relaxing and I feel rejuvenated.
Saturday, November 29, 2008
Thursday, November 27, 2008
Carnival of MS Bloggers #24 - Thanksgiving Edition
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Hope, Thanksgiving, and Community
Once upon a time there was a little girl who had MS. She lived in Indiana with her Auntie Vi, Uncle Arthur, and Mother Rosie. She loved her life with her family, but dreamed of a place faraway, a place full of adventure and a cure for MS…some place over the rainbow.One especially dark night, there was a tornado that blew the little girl up, up, and away. When she awoke, she was in a very strange land and she was afraid. She saw a sign: “Welcome to the Emerald City, Seattle!” Before she could think about that, a blue seagull flew over her and sat down in front of her.
“Hello, little girl,” spoke the blue seagull. A talking bird! How wonderful, the little girl thought. The blue seagull twisted his head all around until he was looking at her upside down, “What’s your name?” The shy little girl cleared her throat and said softly, “Diane?” The blue seagull’s head spun all around like a top before screeching to a halt, “Are you telling me or ASKING ME?”
Then muttering something through his beak, he flew away, leaving Diane all alone again. She grew frightened and wondered aloud, “What should I do? Where should I go? I have MS and I’m scared.”
“Follow the yellow sick road!” Diane jerked her head to the right, looking for who had said that. “Yes! Follow the yellow sick road!” shouted another voice, but where were the voices coming from? So many voices began screaming the same command: “Follow it! Follow it.”
Diane saw before her a path of yellow. With each step she encountered an odd sensation: vertigo, stars in her eyes, numb feet, weak hands, piercing migraines, depression, and a heaviness in her legs. As she walked further, she saw a corn field ahead and hoped there might be a cob to snack on. If only she could make it one…more…step… suddenly Diane felt a soft tap on her shoulder.Standing behind Diane was a beautiful woman in a billowing dress holding a wand with a bright white star on the tip. “Dear, where are you headed?” spoke the gentle lady.
“I’m looking for a cure for MS,” said Diane with great authority. “WHO are YOU?”
“I am the good witch of the north. The person you seek is the Wizard of Plaus; he is very plausible.”
“How do I find him?”
“You must stay on the yellow sick road. But be very careful along the way,” said the good witch as she started to be blown upward, “the wicked witch of the west coast is never far away. Stay on course, my precious child. And good fortune to yooooooou,” her dress blew up like a sail and she floated into the clouds as silently as she had appeared.
“No! Don’t leave me all alone with MS!” cried Diane.
“Oh, my sweet, dearest, ugly, little slime. Your MS is my delight. T-Cells! Take flight! Attack her nerves! Eat her myelin.” Rubbing her mole infested rumpled hands together, the wicked witch of the west, gazed into her foggy magic ball as the winged T-Cells and viruses began flying out the cracked windows of her crumbling castle walls. With her 13 inch fingernails she grabbed a passing T-Cell. “And don’t forget her spinal cord and brain.”“BREAK THE BLOOD BRAIN BARRIER!” they screeched as they flew.
Diane fell near the corn field. Looking up at the pastel sky, two large eyeballs stared back at her! “AHH!” she screamed to an echoed “AHHH!” from the scarecrow attached to the eyeballs. “Who are YOU?” asked the scarecrow. “I’m Diane. I need to talk to the Wizard of Plaus. I need a cure for MS.”
The scarecrow helped her up. “Mrs? Miss?” “No, no, MS—Multiple Sclerosis. It is a disease of the central nervous system.” The scarecrow frowned; his stitched rag mouth turned upside down, “Oh, the brain. If I only had a brain. I’m going with you and ask the Wiz of Plaus for a brain.”
Off the two went, both falling and getting back up as they moved, neither expecting what jumped out in front of them---a lion! He roared so loudly that the straw blew out of the scarecrow and all that remained was his hat and two button-eyeballs. “Look what you did!” shouted Diane.
The cowardly lion hit his head with his giant paw. “Aw shucks. I’m so sorry. What was I thinking? You both came upon me out of nowhere and scared the fur balls out of me. What are you doing way out here?”
The scarecrow’s stitched rag mouth started speaking. “We are going to see the Wizard of Plaus. She wants a cure for MS and I want a brain. Now help put me back together. With that said, he directed the lion and Diane exactly how to build him back together. “I am, am, am, I mean if you don’t mind, I um, would like to, uh, go along and, well…well…”
In unison Diane and the scarecrow impatiently barked, “Well, WHAT?!”
With his tail between his legs, the lion said meekly, “Ask for some courage?”
After continuing along their way, the troop of three soon saw an enormous structure rising high into the sky, up into space like a needle. The Emerald city’s Wizard of Plaus was only a skip, or twenty, away. SQUEEEEEEEEEL
What was that, they wondered. KEEERRR-PLUNK. In their path a tin can fell. “Help me. Please help me.” Diane thought--- what next? A talking scarecrow, a cowardly lion, and now a talking tin can? A glance to the right showed that in fact this was the head of a tin MAN! The scarecrow took off running, returned with an oil can and began to oil and reconnect the tin man’s head.“Oh, that feels chicken-biskets good! Thank you. Who are you wonderful creatures?” asked the well-oiled tin man. After introductions were made the troop became four. The tin man wanted a heart. But before they began to skip, the flying T-Cells and viruses had arrived. They swarmed Diane, causing her body to stiffen like iron.
“Lion, swat them!” commanded the scarecrow, “Tin man, put your cool metal on her. I’ll give her my stick arm to walk with.” The tin man wrapped his cool arms around Diane and the lion bit and swatted the T-Cells until they gave up and flew away.
The wicked witch of the west coast was furious at her immune system “mission unaccomplished” and she took a step outside to shoot her returning warriors with Solu-medrol; but the Emerald city rain dealt her a deadly blow. “I’m melting.” The Seattle rain melted her away forever. Her anger blinded her to the effect fresh rain had on her.
“We are here,” said the troop as they eyed the huge tower. A guard with a bad haircut blocked the entrance. “Don’t worry,” said the tin man, “he is the bill and gates keeper; just throw apples at him and he runs away.”“WHO GOES THERE?” bellowed a booming voice from the top of the space jousting needle. The lion began to shiver and the scarecrow turned to leave, stopped only by the tin man. Diane spoke, “I want a cure for MS. Scarecrow wants a brain, Lion wants courage and Tin Man wants a heart.” “GO AWAY” Go away? That’s it? “Look, an elevator, let’s go to the top,” said the scarecrow. Up they went until the doors opened and there, standing with a microphone was: Madonna.
Diane couldn’t believe her eyes. “YOU are the great Wizard of Plaus?! You are just Madonna!”
“Excuse me? JUST? I am a music legend, a cultural icon. Yeah, I’m a frigging wizard too AND I write children’s books. I’ve been watching you. You are all jerks. Lion. You want courage? YOU’RE A FRIGGIN’ LION, King of the Jungle. You gave an arse whuppin’ to those T-Cells. Tin man, woe is me; you want a heart, WHAT ARE YOU A VIRGIN? You hugged Diane when she was down. You cared about her. That takes heart, you dope.
And YOU, scarecrow, you want a brain? WELL JOIN THE CLUB! You figured out how to save Diane and fix tinny and put your own SELF back together WITHOUT YOGA OR BOTOX. You bowlbeepers already HAVE what you want.
The lion let out a roar that shook Mt. Rainier; the tin man felt his heart beat; the scarecrow straightened his hat and stood tall…Diane walked slowly up to Madonna. “What about me? Where is my cure?”
Madonna took off her cone bra and put her hands on her hips. “Listen Kid, right now there is only one cure for MS that’s plausible, and the good witch gave it to you the moment you landed in Plaus; and that is hope, a belief that if you just follow your dream anything is plausible. Anything is possible."
Anything is possible. Anything is possible. “Diane? Diane?” “Auntie Vi?”
“Time to wake up. Here, let me help you with your hair. There’s a piece of straw in there…”
A few discussions floating around the MS Community blogosphere:
Lanette returns from her wedding in Jamaica. Yeah Mon, photos included.
Shauna visited Jack's Lake and saw deer tracks and an old bridge.
Lisa discussed Spasticity, Disabilty, and Solumedrol at Multiple Sclerosis Central.
Barbara shares A BODILY SCREAM OF INNER LONELINESS.
Nadja, the Denver Refashionista, is Cured!! No, not that kinda cured. Go read.
Anne thanks everybody for More Success!! in raising funds for Herrad's cushion. I thank you too and Herrad received the funds yesterday. Whooohoooo!!
Richie, Herrad's Sweetie, shares what a typical day entails for a caregiver. Thank you Richie for all that you do.
And Serina shares a favorite Christmas Story about Big Wheel in Indiana.
This concludes the 24th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on December 11, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 8, 2008.
Thank you.
Comments for this post.Thank you.
Wednesday, November 26, 2008
Flu Shots, Easier Injections, and Free MS Publications
Some articles I wrote over at The Health Central Network which you may enjoy reading. Excerpts below...
How NOT to Win Friends and InFLUence People
More writings can be found at MultipleSclerosisCentral.com.
How NOT to Win Friends and InFLUence People
Have you had your flu shot this year? I have.Subcutaneous Injections: 7 Tips for Reduced Pain and Skin Irritation
Vaccination is the best way to combat the spread of influenza “the flu” each year. The majority of adults have antibody protection within 2 weeks after vaccination and with “the flu” not appearing in certain communities until February or March, it is not too late to get your shot for full protection.
National Influenza Vaccination Week is December 8-14, 2008
For subcutaneous (under the skin) self-injections, these tips should help eliminate some pain and lessen site reactions.Multiple Sclerosis Publications available for Free
Momentum, MS in Focus, The Motivator, MS Focus, and Neurology Now
More writings can be found at MultipleSclerosisCentral.com.
Monday, November 24, 2008
The Epstein-Barr Virus and the MS Immune System
On Friday, my producer at The Health Central Network asked me to write something in response to news articles coming out of Australia regarding the Epstein-Barr virus, it's connection to MS, and the development of a vaccine.
So over the weekend I've been - reading, studying, reading some more, writing a little, going back to read again to make sure I understand, writing.........
Below is a brief excerpt of the post which went live this morning. For the full version, click the title below, read, and follow the links to the correlating studies, abstracts, and news reports. This is actually some very interesting research.
"The Kissing Disease" and Multiple Sclerosis: Is there hope for a vaccine?
As reported in The Sydney Morning Herald, Vaccine Hope in MS Link to Virus, the connection between the Epstein-Barr virus and the onset of MS, when combined with the development of an effective vaccine against EBV, may give hope to future generations of persons having a higher risk of developing multiple sclerosis.
Lead researcher at University of Queensland, Michael Pender, has said that once the glandular fever vaccine is fully tested, it could be included in Australia's childhood vaccine program for people who had a diagnosed relative (a higher risk factor).
However, Robert Booy, a professor in pediatrics with the National Centre for Immunization Research at the Children's Hospital at Westmead, said that until scientists could establish the exact cause of MS, it was impossible to ensure a vaccine did not contain proteins which could trigger multiple sclerosis.
So over the weekend I've been - reading, studying, reading some more, writing a little, going back to read again to make sure I understand, writing.........
Below is a brief excerpt of the post which went live this morning. For the full version, click the title below, read, and follow the links to the correlating studies, abstracts, and news reports. This is actually some very interesting research.
"The Kissing Disease" and Multiple Sclerosis: Is there hope for a vaccine?
As reported in The Sydney Morning Herald, Vaccine Hope in MS Link to Virus, the connection between the Epstein-Barr virus and the onset of MS, when combined with the development of an effective vaccine against EBV, may give hope to future generations of persons having a higher risk of developing multiple sclerosis.
Lead researcher at University of Queensland, Michael Pender, has said that once the glandular fever vaccine is fully tested, it could be included in Australia's childhood vaccine program for people who had a diagnosed relative (a higher risk factor).
However, Robert Booy, a professor in pediatrics with the National Centre for Immunization Research at the Children's Hospital at Westmead, said that until scientists could establish the exact cause of MS, it was impossible to ensure a vaccine did not contain proteins which could trigger multiple sclerosis.
Sunday, November 23, 2008
Our Health Care System - 5 Myths
An interesting Health Policy Op-Ed in today's Washington Post.
What is your opinion on the myths and possible solutions?
5 Myths About Our Ailing Health-Care System
By Shannon Brownlee and Ezekiel Emanuel
Sunday, November 23, 2008; B03
With Congress ready to spend $700 billion to prop up the U.S. economy, enacting health-care reform may seem about as likely as the Dow hitting 10,000 again before the end of the year. But it may be more doable than you think, provided we dispel a few myths about how health care works and how much reform Americans are willing to stomach.
1. America has the best health care in the world.
Let's bury this one once and for all. The United States is No. 1 in only one sense: the amount we shell out for health care. We have the most expensive system in the world per capita, but we lag behind many developed countries on virtually every health statistic you can name. Life expectancy at birth? We rank near the bottom of countries in the Organization for Economic Cooperation and Development, just ahead of Cuba and way behind Japan, France, Italy, Sweden and Canada, countries whose governments (gasp!) pay for the lion's share of health care. Infant mortality in the United States is 6.8 per 1,000 births, more than twice as high as in Japan, Norway and Sweden and worse than in Poland and Hungary. We're doing a better job than most on reducing smoking rates, but our obesity epidemic is out of control, our death rate from prostate cancer is only slightly lower than the United Kingdom's, and in at least one study, American heart attack patients did no better than Swedish patients, even though the Americans got twice as many high-tech treatments.
Moreover, the quality of health care is different in different parts of the country. The Centers for Medicare and Medicaid Services have issued a list of 26 measures of quality, such as making sure that heart-attack patients being discharged from the hospital get a prescription for a beta blocker or aspirin to help reduce the risk of a second attack. It turns out that quality is all over the map, and it isn't necessarily better in the places we might expect, such as academic medical centers. Worse still, according to the Congressional Budget Office (CBO), there appears to be no connection between how much Medicare and other payers spend on patients in different parts of the country and the quality of the care the patients receive. You are no more likely to get that beta blocker or aspirin in Los Angeles than in Portland, even though Medicare spends twice as much per beneficiary in Los Angeles.
2. Somebody else is paying for your health insurance.
Nope. Even when your employer offers coverage, he isn't reaching into his own pocket to cover you and your fellow employees; he's reaching into your pocket, paying you lower wages than he would if he didn't have to pay for your health insurance.
Rising health-care costs are partly to blame for stagnant wages. Over the past five years, health insurance premiums have risen 5.5 times faster on average than inflation, 2.3 times faster than business income and four times faster than workers' earnings. Four times. That's why wages have been nearly flat since the 1980s, even as U.S. productivity has been going up. In effect, about half the money you should be earning for being more productive is being sucked up by ever more expensive health-insurance premiums.
If you pay taxes, you're also paying for the health care provided through state and federal programs such as Medicare, Medicaid, the Veterans Administration and the military. All told, the average family of four is coughing up $29,000 a year for health care through taxes, lower wages and out-of-pocket medical expenses.
3. We would save a lot if we could cut the administrative waste of private insurance.
The idea that we could wring billions of dollars in savings this way is seductive, but it wouldn't really accomplish that much. For one thing, some administrative costs are not only necessary but beneficial. Following heart-attack or cancer patients to see which interventions work best is an administrative cost, but it's also invaluable if you want to improve care. Tracking the rate of heart attacks from drugs such as Avandia is key to ensuring safe pharmaceuticals.
Let's just say that we could wave a magic wand and cut private insurers' overhead by half, to what the Canadian government spends on administering its health-care system -- 15 percent. How much would we save? Not as much as you may think. Private insurers pay a little more than a third of what we spend on health care, which means that we'd cut a little more than 5 percent from our total budget, or about $124 billion. That's not peanuts, but it's not even enough to cover everybody who's currently uninsured.
More to the point, we only get to save it once. That's because administrative waste isn't what's driving health-care costs up faster than inflation. Most of the relentless rise can be attributed to the expansion of hospitals and other health-care sectors and the rapid adoption of expensive new technologies -- new drugs, devices, tests and procedures. Unfortunately, only a fraction of all that new stuff offers dramatically better outcomes. If we're worried about costs, we have to ask whether a $55,000 drug that prolongs the lives of lung cancer patients for an average of a few weeks is really worth it. Unless we find a cure for our addiction to the new but not necessarily improved, our national medical bill will continue to skyrocket, regardless of how efficient insurance companies become.
4. Health-care reform is going to cost a bundle.
Only if you think that covering the uninsured is our only priority. Yes, making health care available to all citizens is the right thing to do. But it isn't the only thing to do. We also have to fix the spectacularly wasteful and expensive way doctors and hospitals deliver care.
Our physicians are working within a truly dysfunctional, often chaotic system that prevents them from caring for us properly. Between 50,000 and 100,000 patients die each year from preventable medical errors. According to the Centers for Disease Control, 1.7 million Americans acquire an infection while in the hospital and nearly 100,000 of them die from it. Laboratory imaging tests are routinely repeated because the originals can't be found. Patients with such chronic illnesses as heart failure and diabetes land in the hospital because their physicians fail to monitor their condition. When patients have multiple doctors, there's often nobody keeping track of the different medications, tests and treatments each one prescribes.
Our doctors and hospitals are failing to provide us with care we need while delivering a staggering amount that we don't need. Current estimates suggest that as much as 20 to 30 percent of what we spend, or about $500 billion, goes toward useless, potentially harmful care.
There are two bright spots. One: We can improve the quality of care and cut costs without rationing. There are models out there for how to do it right -- the Mayo Clinic, the Geisinger Clinic in Pennsylvania, the Cleveland Clinic and California's Kaiser Permanente are just a few of the organized group practices that are doing a better job for less. Their doctors are better than average at using the best medical evidence available. They're more likely to be using electronic medical records, which can help keep track of patients who have multiple physicians and need complex care. And they're less likely to provide unnecessary care.
Two: Even moderate reform of the delivery system would improve care and save money. The Lewin Group's analysis shows that a bill proposed by Sen. Ron Wyden, an Oregon Democrat, calling for a more comprehensive overhaul of the health-care system than either McCain's plan or Obama's could actually insure everyone and save $1.4 trillion over 10 years. More reform is cheaper.
5. Americans aren't ready for a major overhaul of the health-care system.
We may be readier than you think. A recent study published in the New England Journal of Medicine found that only 7 percent of Americans rate our health-care system excellent. Nearly 40 percent consider it poor. A whopping 70 percent believe it needs major changes, if not a complete overhaul.
Now is not the time to think small, to cover a few million Americans and leave the bigger job of controlling costs and improving quality for another day. We can't afford not to reform the delivery system as soon as possible. At 17 percent of gross domestic product, health care is the biggest single sector of the economy, and it's consuming a larger and larger proportion every year. According to CBO projections, health care will account for 25 percent of GDP by 2025 and 49 percent by 2082. That's simply unsustainable. Any plan that reforms health care has to do more than simply cover the uninsured. The nation's health and wealth depend on it.
brownlee@newamerica.net
Shannon Brownlee, a visiting scholar at the National Institutes of Health Clinical Center, is the author of "Overtreated." Ezekiel Emanuel, an oncologist and author of "Healthcare, Guaranteed," is chairman of the center's Department of Bioethics. The views expressed here are the authors' own.
What is your opinion on the myths and possible solutions?
5 Myths About Our Ailing Health-Care System
By Shannon Brownlee and Ezekiel Emanuel
Sunday, November 23, 2008; B03
With Congress ready to spend $700 billion to prop up the U.S. economy, enacting health-care reform may seem about as likely as the Dow hitting 10,000 again before the end of the year. But it may be more doable than you think, provided we dispel a few myths about how health care works and how much reform Americans are willing to stomach.
1. America has the best health care in the world.
Let's bury this one once and for all. The United States is No. 1 in only one sense: the amount we shell out for health care. We have the most expensive system in the world per capita, but we lag behind many developed countries on virtually every health statistic you can name. Life expectancy at birth? We rank near the bottom of countries in the Organization for Economic Cooperation and Development, just ahead of Cuba and way behind Japan, France, Italy, Sweden and Canada, countries whose governments (gasp!) pay for the lion's share of health care. Infant mortality in the United States is 6.8 per 1,000 births, more than twice as high as in Japan, Norway and Sweden and worse than in Poland and Hungary. We're doing a better job than most on reducing smoking rates, but our obesity epidemic is out of control, our death rate from prostate cancer is only slightly lower than the United Kingdom's, and in at least one study, American heart attack patients did no better than Swedish patients, even though the Americans got twice as many high-tech treatments.
Moreover, the quality of health care is different in different parts of the country. The Centers for Medicare and Medicaid Services have issued a list of 26 measures of quality, such as making sure that heart-attack patients being discharged from the hospital get a prescription for a beta blocker or aspirin to help reduce the risk of a second attack. It turns out that quality is all over the map, and it isn't necessarily better in the places we might expect, such as academic medical centers. Worse still, according to the Congressional Budget Office (CBO), there appears to be no connection between how much Medicare and other payers spend on patients in different parts of the country and the quality of the care the patients receive. You are no more likely to get that beta blocker or aspirin in Los Angeles than in Portland, even though Medicare spends twice as much per beneficiary in Los Angeles.
2. Somebody else is paying for your health insurance.
Nope. Even when your employer offers coverage, he isn't reaching into his own pocket to cover you and your fellow employees; he's reaching into your pocket, paying you lower wages than he would if he didn't have to pay for your health insurance.
Rising health-care costs are partly to blame for stagnant wages. Over the past five years, health insurance premiums have risen 5.5 times faster on average than inflation, 2.3 times faster than business income and four times faster than workers' earnings. Four times. That's why wages have been nearly flat since the 1980s, even as U.S. productivity has been going up. In effect, about half the money you should be earning for being more productive is being sucked up by ever more expensive health-insurance premiums.
If you pay taxes, you're also paying for the health care provided through state and federal programs such as Medicare, Medicaid, the Veterans Administration and the military. All told, the average family of four is coughing up $29,000 a year for health care through taxes, lower wages and out-of-pocket medical expenses.
3. We would save a lot if we could cut the administrative waste of private insurance.
The idea that we could wring billions of dollars in savings this way is seductive, but it wouldn't really accomplish that much. For one thing, some administrative costs are not only necessary but beneficial. Following heart-attack or cancer patients to see which interventions work best is an administrative cost, but it's also invaluable if you want to improve care. Tracking the rate of heart attacks from drugs such as Avandia is key to ensuring safe pharmaceuticals.
Let's just say that we could wave a magic wand and cut private insurers' overhead by half, to what the Canadian government spends on administering its health-care system -- 15 percent. How much would we save? Not as much as you may think. Private insurers pay a little more than a third of what we spend on health care, which means that we'd cut a little more than 5 percent from our total budget, or about $124 billion. That's not peanuts, but it's not even enough to cover everybody who's currently uninsured.
More to the point, we only get to save it once. That's because administrative waste isn't what's driving health-care costs up faster than inflation. Most of the relentless rise can be attributed to the expansion of hospitals and other health-care sectors and the rapid adoption of expensive new technologies -- new drugs, devices, tests and procedures. Unfortunately, only a fraction of all that new stuff offers dramatically better outcomes. If we're worried about costs, we have to ask whether a $55,000 drug that prolongs the lives of lung cancer patients for an average of a few weeks is really worth it. Unless we find a cure for our addiction to the new but not necessarily improved, our national medical bill will continue to skyrocket, regardless of how efficient insurance companies become.
4. Health-care reform is going to cost a bundle.
Only if you think that covering the uninsured is our only priority. Yes, making health care available to all citizens is the right thing to do. But it isn't the only thing to do. We also have to fix the spectacularly wasteful and expensive way doctors and hospitals deliver care.
Our physicians are working within a truly dysfunctional, often chaotic system that prevents them from caring for us properly. Between 50,000 and 100,000 patients die each year from preventable medical errors. According to the Centers for Disease Control, 1.7 million Americans acquire an infection while in the hospital and nearly 100,000 of them die from it. Laboratory imaging tests are routinely repeated because the originals can't be found. Patients with such chronic illnesses as heart failure and diabetes land in the hospital because their physicians fail to monitor their condition. When patients have multiple doctors, there's often nobody keeping track of the different medications, tests and treatments each one prescribes.
Our doctors and hospitals are failing to provide us with care we need while delivering a staggering amount that we don't need. Current estimates suggest that as much as 20 to 30 percent of what we spend, or about $500 billion, goes toward useless, potentially harmful care.
There are two bright spots. One: We can improve the quality of care and cut costs without rationing. There are models out there for how to do it right -- the Mayo Clinic, the Geisinger Clinic in Pennsylvania, the Cleveland Clinic and California's Kaiser Permanente are just a few of the organized group practices that are doing a better job for less. Their doctors are better than average at using the best medical evidence available. They're more likely to be using electronic medical records, which can help keep track of patients who have multiple physicians and need complex care. And they're less likely to provide unnecessary care.
Two: Even moderate reform of the delivery system would improve care and save money. The Lewin Group's analysis shows that a bill proposed by Sen. Ron Wyden, an Oregon Democrat, calling for a more comprehensive overhaul of the health-care system than either McCain's plan or Obama's could actually insure everyone and save $1.4 trillion over 10 years. More reform is cheaper.
5. Americans aren't ready for a major overhaul of the health-care system.
We may be readier than you think. A recent study published in the New England Journal of Medicine found that only 7 percent of Americans rate our health-care system excellent. Nearly 40 percent consider it poor. A whopping 70 percent believe it needs major changes, if not a complete overhaul.
Now is not the time to think small, to cover a few million Americans and leave the bigger job of controlling costs and improving quality for another day. We can't afford not to reform the delivery system as soon as possible. At 17 percent of gross domestic product, health care is the biggest single sector of the economy, and it's consuming a larger and larger proportion every year. According to CBO projections, health care will account for 25 percent of GDP by 2025 and 49 percent by 2082. That's simply unsustainable. Any plan that reforms health care has to do more than simply cover the uninsured. The nation's health and wealth depend on it.
brownlee@newamerica.net
Shannon Brownlee, a visiting scholar at the National Institutes of Health Clinical Center, is the author of "Overtreated." Ezekiel Emanuel, an oncologist and author of "Healthcare, Guaranteed," is chairman of the center's Department of Bioethics. The views expressed here are the authors' own.
Saturday, November 22, 2008
Make Room for a few More - New MS Blogger Alert!!
Newly Diagnosed MS Bloggers -
My Journey with Multiple Scleorsis
Kelley
Bifurcate in the Road
Kmilyun
My Story of Life with Lyme and MS
Melissa
The Barber Three
lainaks
New MS Caregiver Blogs -
A Place To Scream
Richie - Herrad's beloved
Paula in Tennessee
Paula - Husband has MS
New URLs for Familiar Blogs -
MS Dissonance
Shannon
The Perseverant Pincushion
Trish
De-Clare-ation
Clare (formerly SlimmingWhirled)
My Journey with Multiple Scleorsis
Kelley
Bifurcate in the Road
Kmilyun
My Story of Life with Lyme and MS
Melissa
The Barber Three
lainaks
New MS Caregiver Blogs -
A Place To Scream
Richie - Herrad's beloved
Paula in Tennessee
Paula - Husband has MS
New URLs for Familiar Blogs -
MS Dissonance
Shannon
The Perseverant Pincushion
Trish
De-Clare-ation
Clare (formerly SlimmingWhirled)
Friday, November 21, 2008
Spasticity, Disability, and Solumedrol
Some articles I wrote over at The Health Central Network which you may enjoy reading. Excerpts below...
Solumedrol: It's All The Rage!!
Thanks for going over to MultipleSclerosisCentral.com to read and comment upon my humble musings. I appreciate it greatly.
Solumedrol: It's All The Rage!!
If you have multiple sclerosis, it just might be possible that you’ve also experienced the dreaded IVSM. IVSM = Intravenous Solumedrol, a treatment which involves really high doses of glucocorticoid steroids, specifically Methylprednisolone.Frankenstein, Ginger, and Me
Solumedrol, a potent anti-inflammatory steroid, is used as an emergency treatment for acute exacerbations. It does not affect the course of the disease, but it does shorten the length of a relapse by putting a stop to ongoing inflammation and closing the blood-brain barrier.
If your relapses have not been too severe, maybe you’ve not had the ‘pleasure’ of IVSM so far in your MS career. I applaud you in that. But if you do have to undergo the infusion, hopefully these tips will help make your experience more tolerable.
Halloween is past, over, done for this year... and I have Multiple Sclerosis, but that doesn’t make me a MonSter, does it?Disability: What's your Kurtzke Expanded Disability Status Scale (EDSS) Score?
Not really, but lately, I am Frankenstein!!! The 1931 Boris Karloff version.
Why am I walking with the stiff lurch of the classic film creature you ask? Spasticity.
Although the EDSS lacks sensitivity to short-term changes in a patient’s status, it is used extensively in national and international trials to evaluate the effectiveness of therapy. It is heavily weighted toward ambulation assessment and fails to assess cognition, upper extremity function, and fatigue.
Fundamental to the EDSS is the Functional Systems (FS) Scale which evaluates seven areas of the central nervous system which control bodily functions (0 = normal function and 6 = unable to complete task). The FS scores are especially important in the less severe forms of disability where a patient may have same abnormal disability but is otherwise still ambulatory.
Thanks for going over to MultipleSclerosisCentral.com to read and comment upon my humble musings. I appreciate it greatly.
Wednesday, November 19, 2008
Ensure your Insurance? Crazy MS!!
Peep. Peep. Peep.
Well, as Diane mentioned in Multiple Sclerosis Worth Reading, I was mentioned in the latest Momentum Magazine from the National MS Society (Winter 08/09). The article is about planning for your future and my contribution deals with health insurance. I'm including my portion of the article below -
What's Ahead for You? Planning to Plan by Heather Boerner (pp. 24-30)
Excerpt from pages 26-27:
Planning to put money where your future is: insurance and savings
For Lisa Emrich, $325 a month is a small price to pay for ensuring her insurance.
That's how much she spends now on her individual health insurance. As a self-employed musician and music teacher, she was shopping for a policy that would pay for her MS needs. [MS drugs, specifically] Insurance brokers advised her to hold onto her current insurance for dear life. So even though she could have been added to her boyfriend's insurance policy when the couple moved in together, she said she's unlikely to let her own insurance go. You know, just in case.
"It's sort of an insurance policy for an insurance policy," said Emrich, 40, who lives in Washington, D.C. "If anything did happen--if he changed jobs--paying an extra $325 a month might be a good investment."
Since her diagnosis in 2005, Emrich has made several other good investments: She opened a Self-Employed Pension account and an Individual Retirement Account.
She's lucky. She's always been a good saver. But even if you don't have that advantage, you should still think about how you can protect yourself financially. Some people with MS work without much interruption in their earning power for decades. For others, sudden symptom progression leaves them without work--and without health insurance. For everyone, financial planning is one of the most important tools to protect against the unpredictable.
[Personal note: This insurance policy was obtained in 2000, years before receiving the official MS diagnosis. The policy was underwritten which explains why it doesn't cost over $500 as do other individual policies in the state do, if you have MS. See Mandy for an example.
In this article, "MS needs" really means "MS drugs." I like my insurance policy except that pesky detail which limits my coverage to $1500 each year for pharmaceuticals. Oh, and maybe the part where standard MRIs cost me a $500 co-insurance. But other than that, I'm good. I guess.
Oh, except that other part......]
Eventually, this edition of Momentum Magazine will be included here.
Well, as Diane mentioned in Multiple Sclerosis Worth Reading, I was mentioned in the latest Momentum Magazine from the National MS Society (Winter 08/09). The article is about planning for your future and my contribution deals with health insurance. I'm including my portion of the article below -
What's Ahead for You? Planning to Plan by Heather Boerner (pp. 24-30)
Excerpt from pages 26-27:
Planning to put money where your future is: insurance and savings
For Lisa Emrich, $325 a month is a small price to pay for ensuring her insurance.
That's how much she spends now on her individual health insurance. As a self-employed musician and music teacher, she was shopping for a policy that would pay for her MS needs. [MS drugs, specifically] Insurance brokers advised her to hold onto her current insurance for dear life. So even though she could have been added to her boyfriend's insurance policy when the couple moved in together, she said she's unlikely to let her own insurance go. You know, just in case.
"It's sort of an insurance policy for an insurance policy," said Emrich, 40, who lives in Washington, D.C. "If anything did happen--if he changed jobs--paying an extra $325 a month might be a good investment."
Since her diagnosis in 2005, Emrich has made several other good investments: She opened a Self-Employed Pension account and an Individual Retirement Account.
She's lucky. She's always been a good saver. But even if you don't have that advantage, you should still think about how you can protect yourself financially. Some people with MS work without much interruption in their earning power for decades. For others, sudden symptom progression leaves them without work--and without health insurance. For everyone, financial planning is one of the most important tools to protect against the unpredictable.
[Personal note: This insurance policy was obtained in 2000, years before receiving the official MS diagnosis. The policy was underwritten which explains why it doesn't cost over $500 as do other individual policies in the state do, if you have MS. See Mandy for an example.
In this article, "MS needs" really means "MS drugs." I like my insurance policy except that pesky detail which limits my coverage to $1500 each year for pharmaceuticals. Oh, and maybe the part where standard MRIs cost me a $500 co-insurance. But other than that, I'm good. I guess.
Oh, except that other part......]
Eventually, this edition of Momentum Magazine will be included here.
Tuesday, November 18, 2008
Provigil - 28% Price Hike since March 2008
Dear Brass and Ivory readers,
I thought that you would enjoy (or cringe) reading the following by Ed Silverman of The Star-Ledger of New Jersey. To put things more into perspective - the current per pill rate allowed by my insurance company is about $11 whereas two years ago it was $9.
In 2006, I was taking 2 pills per day. Now I only use Provigil as needed and then only half a tablet. Since I have insurance with prescription coverage, Cephalon considers me ineligible for their assistance program. Arrgh.
Fighting Generics, One Price Hike At A Time
from Pharmalot by Ed Silverman
Twice this year, Cephalon has sharply raised the price of its Provigil narcolepsy drug, which is now 28 percent more expensive than in March and 74 percent more expensive than four years ago, and the drugmaker said recently it plans to continue raising the price, The Wall Street Journal writes.
The Provigil price increases - the average wholesale price is now $8.71 a tablet - are an extreme example of a common tactic drugmakers employ in the US to boost profits and steer patients away from cheaper generics, the paper continues.
Here’s how it works: Knowing that Provigil will face generic competition in 2012 as its patent nears expiration, Cephalon is planning to launch a longer-acting version of the drug called Nuvigil next year. To convert patients from Provigil to Nuvigil, Cephalon has suggested in investor presentations it will price Nuvigil lower than the sharply increased price of Provigil, the Journal writes.
By the time generic versions of Provigil arrive, Cephalon hopes that most Provigil users will have switched to the less-expensive Nuvigil, which has patent protection until 2023. Meanwhile, Cephalon will have maximized its Provigil revenue with the repeated price hikes, the paper explains.
“You should expect that we will likely raise Provigil prices to try to create an incentive for the reimbursers to preferentially move to Nuvigil,” Chip Merritt, Cephalon’s vp of investor relations, told a recent health care conference, according to a transcript. Cephalon acknowledges regularly increasing prices, although until this year, the drugmaker says Provigil prices were rarely raised and offers a patient assistance program, but that couldn’t accommodate everyone who sought help.
Interestingly, just last week, Cephalon ceo Frank Baldino told a biotech conference that drugmakers should lower prices to avoid being in the crosshairs of the federal government. “It’s time to reconsider the pricing model,” he said, according to Dow Jones. “Perhaps it’s time to move toward a volume model” in which higher sales volumes make up for lower prices.
Provigil’s price increase over the past four years has been almost four times steeper than the 4 percent compound annual growth rate of the average drug price during that period, according to a DestinationRx, the Journal writes. The paper adds some insurers say may find it too costly to keep patients on Provigil once Nuvigil is introduced because generic Provigil will still be two years off.
“It’s really hard to take a higher price now for a lower price in the future when the future is very far away,” Edmund Pezalla, national medical director for Aetna Pharmacy Management, tells the Journal.
Since some patients take Provigil to help stay awake for various reasons, such as work, a portion of sale are off-label In September, Cephalon agreed to plead guilty to one misdemeanor count of violating the US. Food, Drug and Cosmetic Act and to pay $444 million to settle federal and state allegations that Provigil and two other drugs were promoted for off-label usage (back story).
I thought that you would enjoy (or cringe) reading the following by Ed Silverman of The Star-Ledger of New Jersey. To put things more into perspective - the current per pill rate allowed by my insurance company is about $11 whereas two years ago it was $9.
In 2006, I was taking 2 pills per day. Now I only use Provigil as needed and then only half a tablet. Since I have insurance with prescription coverage, Cephalon considers me ineligible for their assistance program. Arrgh.
Fighting Generics, One Price Hike At A Time
from Pharmalot by Ed Silverman
Twice this year, Cephalon has sharply raised the price of its Provigil narcolepsy drug, which is now 28 percent more expensive than in March and 74 percent more expensive than four years ago, and the drugmaker said recently it plans to continue raising the price, The Wall Street Journal writes.
The Provigil price increases - the average wholesale price is now $8.71 a tablet - are an extreme example of a common tactic drugmakers employ in the US to boost profits and steer patients away from cheaper generics, the paper continues.
Here’s how it works: Knowing that Provigil will face generic competition in 2012 as its patent nears expiration, Cephalon is planning to launch a longer-acting version of the drug called Nuvigil next year. To convert patients from Provigil to Nuvigil, Cephalon has suggested in investor presentations it will price Nuvigil lower than the sharply increased price of Provigil, the Journal writes.
By the time generic versions of Provigil arrive, Cephalon hopes that most Provigil users will have switched to the less-expensive Nuvigil, which has patent protection until 2023. Meanwhile, Cephalon will have maximized its Provigil revenue with the repeated price hikes, the paper explains.
“You should expect that we will likely raise Provigil prices to try to create an incentive for the reimbursers to preferentially move to Nuvigil,” Chip Merritt, Cephalon’s vp of investor relations, told a recent health care conference, according to a transcript. Cephalon acknowledges regularly increasing prices, although until this year, the drugmaker says Provigil prices were rarely raised and offers a patient assistance program, but that couldn’t accommodate everyone who sought help.
Interestingly, just last week, Cephalon ceo Frank Baldino told a biotech conference that drugmakers should lower prices to avoid being in the crosshairs of the federal government. “It’s time to reconsider the pricing model,” he said, according to Dow Jones. “Perhaps it’s time to move toward a volume model” in which higher sales volumes make up for lower prices.
Provigil’s price increase over the past four years has been almost four times steeper than the 4 percent compound annual growth rate of the average drug price during that period, according to a DestinationRx, the Journal writes. The paper adds some insurers say may find it too costly to keep patients on Provigil once Nuvigil is introduced because generic Provigil will still be two years off.
“It’s really hard to take a higher price now for a lower price in the future when the future is very far away,” Edmund Pezalla, national medical director for Aetna Pharmacy Management, tells the Journal.
Since some patients take Provigil to help stay awake for various reasons, such as work, a portion of sale are off-label In September, Cephalon agreed to plead guilty to one misdemeanor count of violating the US. Food, Drug and Cosmetic Act and to pay $444 million to settle federal and state allegations that Provigil and two other drugs were promoted for off-label usage (back story).
Monday, November 17, 2008
More New MS Blogs!!
Please welcome Rae and Adriana to our MS blogging family. Linda, I think we need a larger short bus.
Meet Rae. She has MS and a seizure disorder. Rae says, "I don’t let anything get me down for long, because I’ve learned that every moment is filled with possibilities for happiness and sadness, worry and excitement, and I choose to have a GREAT life."
Adriana's Home
Adriana lives in Israel. This is her weight loss journal in which she discusses other aspects of her life, including living with multiple sclerosis.
Welcome.
Saturday, November 15, 2008
Montel Williams will be Lobbying against Price-Negotiation for Medicare Drugs
The pharmaceutical industry is not so keen in government having the power to negotiate drug prices for Medicare users. This on top of the fact that Medicare Part D has been a windfall for Big Pharma and they don't want anything to interfere with that.
Read below how PhRMA plans a media blitz to work against Obama's health policy agenda. I'm sad to see that Montel l has devoted his face and voice for the effort.
Hat Tip: David Williams at Health Business Blog - "Is Big Pharma Preparing to Shoot itself in the Foot?"
Drugmaker ads to target Obama idea
Lobbyist readies for prescription price fight
Sean Lengell, The Washington Times
Friday, November 14, 2008
Read below how PhRMA plans a media blitz to work against Obama's health policy agenda. I'm sad to see that Montel l has devoted his face and voice for the effort.
Hat Tip: David Williams at Health Business Blog - "Is Big Pharma Preparing to Shoot itself in the Foot?"
Drugmaker ads to target Obama idea
Lobbyist readies for prescription price fight
Sean Lengell, The Washington Times
Friday, November 14, 2008
The nation's largest pharmaceutical lobbying group is preparing a multimillion-dollar public relations campaign to tout the importance of free-market health care and undercut an expected push by the Obama administration for price controls of prescription drugs.
The effort, which will include a national television commercial scheduled to begin airing next week, is the first salvo in what likely will be a huge battle over health care reform during the Obama presidency.
Other major industries are also gearing up for the fight, including big businesses and insurance companies. But the stakes are especially high for drugmakers, which stand to lose as much as $30 billion in revenue if President-elect Barack Obama's plan to let the federal government negotiate Medicare drug prices is implemented, according to one independent report.
"There's no question that next year will be a challenging year," said Ken Johnson, senior vice president with the Pharmaceutical Research and Manufacturers of America, or PhRMA, which is organizing the campaign.
Mr. Obama attacked drug companies repeatedly during his election campaign.
PhRMA says its upcoming advertisement, which will feature TV talk show host and PhRMA spokesman Montel Williams, doesn't criticize the pending Obama administration or any of its health care proposals.
"We're going to do an ad campaign that is designed to make people aware of the importance of preserving your free-market health care system," Mr. Johnson said.
He added that PhRMA recognizes that "some reforms are needed in order to keep that system vibrant."
Mr. Johnson said PhRMA would've embarked on exactly the same ad campaign if Mr. Obama's Republican presidential rival, Sen. John McCain, had won last week's presidential election.
Mr. Obama has said he will hold drug and insurance companies "accountable for the prices they charge and the harm they cause." He has promised to allow Medicare to negotiate with drugmakers for cheaper prices, he said.
Giving Medicare the authority to negotiate drug prices - a provision that they currently don't have - would cause the pharmaceutical industry to lose $10 billion to $30 billion in annual revenues, according to a report released last month by the Boston Consulting Group.
"If you start to take a pretty big price decrease out of that large market, it has an enormous impact on drug companies and really their ability to generate their type of shareholder return that they have had in the past," said Peter Lawyer, a senior partner with Boston Consulting.
"I think [drug companies] are rightfully concerned about it. Even on the lower end of our estimate - the $10 billion - that's a big deal, that's a big chunk of your profitability."
The report analyzed the health care proposals of Mr. Obama and Mr. McCain.
With less revenue from Medicare, drug companies may begin charging more for drugs sold outside the program. And lower profits mean less money for research and development - and a reduction in the amount of new drugs on the market in the future, Mr. Lawyer said,
While Mr. Obama continues to hammer out his health care reform plan, Democrats on Capitol Hill also are working on their own proposals to overhaul the nation's medical system.
Sen. Edward M. Kennedy in recent weeks has orchestrated meetings with lobbyists and lawmakers from both parties to craft legislation to provide affordable medical coverage to all Americans.
The Massachusetts Democrat, who has been sidelined for months with a dangerous form of brain cancer, also has organized at least 14 roundtable meetings since June with members from both parties on the Senate committees with jurisdiction over health care.
Sen. Max Baucus, Montana Democrat, on Wednesday released a blueprint for universal health care coverage. His plan calls for a nationwide insurance pool that would allow those without health insurance to receive medical care.
House Energy and Commerce Chairman John D. Dingell, Michigan Democrat, whose committee has authority over health care issues, has vowed to make health care reform a priority in the coming year.
The PhRMA campaign won't be the first health care lobbying effort designed to sway public opinion against a new president's plans for health care reform. The "Harry and Louise" TV ads in 1993 attacked President Clinton's proposed health care overhaul, and were widely credited as playing a key role in killing the plan. The lobbying group Health Insurance Association of America, which ran the ads, spent $10 million on the campaign.
Drugmakers so far have generally shied away from criticizing the new administration, saying they are taking a wait-and-see approach to Mr. Obama's pending health care reforms. But the PhRMA ad campaign indicates that the industry is leaving nothing to chance.
Drug manufacturers also gave more than $1.6 million to Mr. Obama's presidential election campaign - almost triple the amount the industry gave to the Democrat's Republican rival, Mr. McCain.
"We've been moving the pieces on the chess board around for some time now getting ready for next year, and we've got a great game plan in place," Mr. Johnson said. "We think we've earned a right at the table, and we're optimistic that at the end of the day, the majority of members of Congress will recognize the importance of the pharmaceutical industry to health care."
Thursday, November 13, 2008
Carnival of MS Bloggers #23 - MS Change Edition
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
The MS Changes Edition
I've started to notice that a lot of my friends are starting to disappear. It's like this widespread epidemic!
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.
My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.
What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.
The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.
I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.
But I will say, I have found some funny sides to this kind of thing.
The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.
During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."
When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"
See, I'm still me.
The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.
And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!
I'm not saying that it doesn't hurt that these people have disappeared from my life or some of the ones who have stayed look at me differently. I'm just hoping that if I keep showing them that I'm still here, they'll get it. And the ones that are gone, I guess they were in my life as long as they were supposed to be, right?
At Everyone Here is Jim Dandy, we find Cure Or Curse, Part II
Let me explain.
Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:
I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).
I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!
Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.
You see?
Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.
The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.
We may be slow, lazy, and stupid, but at least we have a good excuse for it.
But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.
We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.
The first rule of having to disappoint others is that this comes only after disappointing ourselves.
This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.
What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?
Think again, right?
Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.
This concludes the 23rd edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on November 27, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, November 24, 2008.
Thank you.
Comments for this post.Thank you.
Tuesday, November 11, 2008
New Blogs - New Blogs
Welcome the following ladies to the MS Blogger community!!
Penelope says, "I am a author and artist living with Multiple Sclerosis, MS for short. I am currently in a clinical trial for fingolimod, which is a pill. I like helping people and making people laugh. I started this blog to talk about my experiences with MS and the study as well as the daily trials and tribulations of living with MS."
*****
Many of you have already met Tracy on the 'Short Bus' over at BrainCheese's place. But I hope now that Tracy just might add Brass and Ivory to her little ol' blogroll for my re-announcing her. :)
*****
P.S. If you are reading this, please consider writing something in a post and linking to Brass and Ivory. (It helps boost Technorati authority which helps to keep our community higher on the Healthcare100 - Top Blogs list.)
Monday, November 10, 2008
"Looking for Hope"
Great Article from BBC -
- Arthritis sufferer Daniella Muallem's experience of using alternative remedies - Video Here.
The group, backed by charity Sense About Science, says vulnerable people are being increasingly exploited by the online promotion of such treatments.
Many untested remedies are expensive and do not work, and are often based on "unreliable" evidence, the experts say.
A new guide has been published to help patients recognise bogus treatments.
Sense About Science says there are now hundreds of websites offering hope to people who are desperate for a cure.
Many online adverts and chat-room conversations testify to the "incredible" benefits of new medicines and treatments, often selling the empty promise of curing the incurable, the charity says.
Some offer stem cell treatments for brain disorders for tens of thousands of pounds. Others sell cures for multiple sclerosis and cancers.
But the evidence behind the remedies is often unreliable, experts say, and patients are increasingly being exploited.
Experts and patient groups want to see tighter regulation to reduce unfounded claims.
Dr Kieran Breen, director of research at the Parkinson's Disease Society, said: "It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson's with the best available advice and treatments."
'Looking for hope'
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said the "cruellest deception" for a patient with chronic illness was the promise of a cure based on "empty hope not evidence".
Ian Douglas, who has multiple sclerosis, agreed, saying patients with incurable conditions found hope in short supply and looked for anything that might help.
"This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour," he said.
A new guide, called I've Got Nothing To Lose By Trying It (download available here), has been published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer's Society and Parkinson's Disease Society.
It aims to help patients tell the difference between beneficial remedies and bogus treatments.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said the guide would help people "bring a critical eye and a questioning mind to what they read and hear".
Have you bought remedies advertised on the web? What has been your experience with them?
Published: 2008/11/10 00:36:23 GMT
© BBC MMVIII
Experts and patient groups want to see tighter regulation to reduce unfounded claims.
Dr Kieran Breen, director of research at the Parkinson's Disease Society, said: "It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson's with the best available advice and treatments."
'Looking for hope'
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said the "cruellest deception" for a patient with chronic illness was the promise of a cure based on "empty hope not evidence".
Ian Douglas, who has multiple sclerosis, agreed, saying patients with incurable conditions found hope in short supply and looked for anything that might help.
"This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour," he said.
A new guide, called I've Got Nothing To Lose By Trying It (download available here), has been published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer's Society and Parkinson's Disease Society.
It aims to help patients tell the difference between beneficial remedies and bogus treatments.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said the guide would help people "bring a critical eye and a questioning mind to what they read and hear".
Have you bought remedies advertised on the web? What has been your experience with them?
Published: 2008/11/10 00:36:23 GMT
© BBC MMVIII
Saturday, November 8, 2008
Thursday, November 6, 2008
MS - Types, Apologies, and Canes
Some excerpts from pieces I've written recently for The Health Central Network. Please come on over the read. Don't be hesitant to join the conversation.
What Type of MS are You?
What Type of MS are You?
About 85% of people are initially diagnosed with Relapsing-Remitting MS which is characterized by unpredictable, but clearly defined, attacks of deficient neurological function. During these attacks (relapses, exacerbations, flare-ups), new symptoms appear or existing symptoms become more severe, after which there may be partial or complete recovery (remission).I'm So Sorry - Economy, Multiple Sclerosis, and Friendship
Benign MS is a subset of RRMS which is characterized by very mild and infrequent relapses. Recovery from attacks is complete without accumulated worsening of neurological function. Approximately 15-20% of people with MS have this form of the disease. Benign MS can only be identified when there is minimal disability 10-15 years after onset and tends to be associated with less severe symptoms at onset (e.g. sensory or sight).
Sometimes don't you just find yourself apologizing repeatedly? Living with MS can be difficult when you are forced to face the Economy while facing the effects of MS itself. Read this short post to see what some other folks are going through.
Paging Gimp Lisa - Your Party is Waiting at the Farthest Baggage Carrousel, Move Quickly
Things I learned on a recent trip to Orlando -
- Use the cane even if you are feeling good. The extra support will pay off later, I promise.
- Inform those who make your travel arrangements, that you are mobility-impaired so that you’re not expected to be a quick as “regular” folks.
- Traveling alone and depending upon others to take care of you can be exhausting.
Tuesday, November 4, 2008
Virginia for Obama - the Nation for Obama
Just wanted to say that Virginia has voted 52.3% for Obama.
The country has voted for Obama.
No kidding, y'all, I hear fireworks going off
in my Northern Virginia neighborhood.
Monday, November 3, 2008
"You Go To My Head"
This just made my morning. Please take 5 minutes to breathe deep and soak up the beauty.
Then, if you want to laugh, watch the following performance.
"Hockey Mama for Obama"
Then, if you want to laugh, watch the following performance.
"Hockey Mama for Obama"
Sunday, November 2, 2008
New (to me) Online Features for MS Patients
where you can post and read reviews of Multiple Sclerosis neurologists
First, why in the world did I create this forum? I had difficulty finding a neurologist that specialized in MS. A lot of them say they do (or have filled out a general questionnaire provided by a local MS chapter that then pronounces them fit to specialize), but they have their hands in too many other pots to really pay attention to the MS world. When I was looking for a specialist, I tried to find some type of ratings system on line where I could see what others in the same situation said about their neurologists. However, nothing for MS Specialists seemed to exist. In the meantime I had a few very negative experiences. Worse than that, I found that nearly all MS patients I talked to had similar, or even worse, experiences.
I decided to create this forum to help individuals with MS or suspected MS find a specialist. Others in your area have rated specialists that they have had experiences with in the hopes of helping you make a decision about who to entrust your care to.
Next is an online forum which has come to my attention through the Carnival of MS Bloggers. The members of this small community really dig us cool MS Bloggers. (Who wouldn't?) They keep their group smallish but have room for new friends. Go check it out.
However, you will have to sign-up and talk a little in the outer forum to get acquainted before being given the keys to the inner realm. But don't worry. Their standards must be pretty low, cause they let me through the doors. LOL.
"created with no artificial sweeteners"
Kurmudgeon's Korner is a forum for people with multiple sclerosis. We're relaxed and informal. We operate on the principle of mutual cooperation and respect. We talk straight. We're insanely funny. We're a private forum; Google can go most places on the internet, but not here. What you say here isn't findable. You're safe with us.
A WORD ABOUT OUR PHILOSOPHY
We're a unicorn-free zone. Meaning, we're not into cutesy bunnies and hearts and flowers and rainbows and unicorns. MS is a crappy disease and we're dedicated to talking straight about what it means and how it affects our lives--except, of course, when we're laughing so hard it hurts, which is most of the time. We don't do platitudes. If you like the glossy ads that say "I climbed Mount Everest because I take (insert drug name here)," we're not for you. If you've ever said "I have MS but MS doesn't have me," you need to find another forum, unless you've repented or are ready to consider doing so. All that said, there's probably not anywhere on earth you'll find a group of people who will understand you better, support you more, or make you laugh harder.
RULES AND REGULATIONS, CODE OF CONDUCT, AND TERMS OF SERVICE
#1. Participate.
#2. Behave yourselves.
That's the end of the rules. We figure that ought to cover it.
WHAT'S NEXT
When you sign in, you'll get to the newbies forum. Give us a post or six so we can get to know each other, and you'll gain admittance to the whole, incredibly great, funny, straight-talking forum. Since the online MS community is relatively small and many of us already know each other, please sign on with the user name your friends will recognize; it'll help us welcome each other. If you're new to online support, welcome! You'll find many new friends inside.
Subscribe to:
Posts (Atom)