Monday, March 31, 2008

Revising Social Security Disability Laws to Benefit Those with MS

I received a request from Stuart of Stu's Views and MS-Related News to post the following message. I believe this is an important issue for those of us with MS whether we anticipate needing the protections of Social Security Disability Laws in the near future or not.


A Message from Bob - Concerning Social Security Reform
( Bob is the gentleman who has been trying to help all in need of Social Security reform) See a previous article of what he has been doing:
August 27, '07: Fighting for disability rights in America
Hi Stuart:
Could you post this?
Please consider sending a quick email to your senators by cutting and pasting the following:

Dear Senator ___________: (Find your senators at )

During the past year, Stu's Views and M.S. Related News has helped gather over 6,000 signatures from individuals afflicted with multiple sclerosis, as well as from physicians, hospital administrators, pharmaceutical company executives, celebrities, social security administration and other federal employees, as well as major chronic illness advocacy organizations, including United Spinal, the Multiple Sclerosis Foundation and several others, to revise our nation's Social Security Disability programs to more adequately address the unique circumstances and challenges of MS victims.

Recent testimony before congress included recommendations to eliminate the five-year limitation on "expedited reinstatement" for disability recipients with serious chronically disabling conditions, such as MS, who desire to attempt to return to work should their condition permit. This is extremely important as no one can predict the severity and course of a disease such as MS.

Many individuals who receive SSI/SSDI would welcome the opportunity to resume working if they knew that federal assistance would resume expediently should their condition worsen in the future. Under the current program, automatic resumption of benefits only continues within five years of disability approval. Beyond that timeframe, individuals who do return to work and then get ill again must apply for SSDI/SSI all over again. This is unfairly restrictive for those who suffer from MS and other chronic illnesses.

A formal presentation made to the House Ways and Means Committee by Terry Moakley, Vice President for Public Affairs of the United Spinal Association to the House Ways and Means Committee on January 16, 2008 included a key recommendation to eliminate the five-year limitation for expedited reinstatement of disability benefits for chronically disabled individuals who desire to work as they are able, without jeopardizing their benefits should their condition worsen in the future.

The following excerpt of the testimony specifically addresses a key area of necessary reform...
Allow ongoing presumptive re-entitlement for those able to work, but who have continuing disabilities – Continued Attachment. (Title II and SSI). We recommend that Title II and SSI disability beneficiaries have a “continued attachment” to the programs as long as their impairments last, even if they do not receive cash benefits because of their work earnings. Beneficiaries of the programs who are sometimes able and other times unable to be employed should have continued attachment to the cash and medical benefits that can be activated with a simple and expedited procedure that is as “seamless” as possible. Many beneficiaries fear working to their full potential because it might cause a permanent loss of cash and/or medical benefits. This is a particular concern for beneficiaries who (a) have relapsing/remitting conditions such as mental illness or many chronic illnesses or (b) need accommodations that may be available in one employment setting, but difficult to obtain in the future. The Ticket to Work and Work Incentives Improvement Act partially addressed this problem by allowing a limited “expedited reinstatement” to benefits, but this is not a complete solution since it is available for only 60 months from termination of cash benefits.The existing expedited reinstatement program could be improved by making the following statutory changes: (1) Eliminate the 60-month time limit; (2) Provide provisional cash and medical benefits until SSA processes the request for reinstatement (current rules limit provisional benefits to six months); (3) Ensure that both cash and medical benefits are promptly reinstated once SSA has approved the reinstatement; (4) Explicitly recognize that people may use expedited reinstatement repeatedly; and (5) Provide that beneficiaries are eligible for expedited reinstatement if they are unable to engage in SGA when they are no longer working.

In short, this is an important first step in revising our nation's SSDI/SSI programs to more adequately address the unique circumstances of those battling MS and other serious chronic illnesses.

Here is the link to the entire testimony.

Please consider how you can use your strong reputation and influence to ensure that the House and Senate will work together to revise SSDI/SSI laws that will improve the security of over 400,000 Americans whose lives and livelihoods have been shattered by multiple sclerosis.

Thank you, in advance, for your help and personal involvement in this vitally important issue.


(Insert your signature and address here)


To all MS Bloggers and Health Policy Bloggers reading this, you are encouraged to copy and post this message on your blog as well. We need to get the message out and sometimes grassroots movements can be powerful. Thank You.

Sunday, March 30, 2008

Chronic Illness and the Patient

I came across an excellent post today by Dr. Wes who discusses a new focus in health care reform - chronic illness, aka "the patient."

First, Blame the Patient by Dr. Wes

Here's a prescription for health care reform in case some of us are not aware of the fete accompli that we have reached in the policy world with the upcoming election - here's a quick summary of what's coming:
  1. First, blame the patient.*
  2. Do not, under any circumstances blame:
    • The relentless bureaucracy hell-bent on continued expansion
    • The rising cost of technology
    • The lack of tort reform
    • Overtesting occurring because of defensive medicine
    • The annually increasing percentage of administrative overhead for healthcare delivery in the US, now approaching 30% of the entire healthcare bill
    • Direct-to-consumer advertising
    • The un-checked hospital construction industry
    • The increasing median age of our populace
    • The lack of transparency of true costs within the system
    • No restriction on healthcare delivery in futile situations
  3. Next, assemble an impressive array of like-minded and highly gifted individuals who sincerely believe the patient is the problem.
  4. Assemble lots and lots of "partners" with financial conflicts in this debate to stand by your side.
  5. Build a very fancy website at significant cost.
  6. Spend lots and lots of money on "new media consultants" to be sure the blog-o-sphere learns of this website
  7. Pat yourself on the back for defining "the problem."
We appreciate the detailed spreadsheets of costs provided by the Partnership to Fight Chronic Disease. Given their apparently extensive talent bank and funding for this type of analysis, we look forward to seeing comparable line-item analyses for the costs of ever-burgeoning healthcare bureaucracy.


* Of course, do not CALL it "the patient," instead, work to "fight chronic disease."

So as someone with two chronic diseases, I'd like to hear someone from the Partnership to Fight Chronic Disease explain exacting how following their suggestions would have prevented my developing multiple sclerosis or rheumatoid arthritis, and thus limiting the personal economic impact of living with those two chronic diseases.

Suggestions to Improve Your Health from the PFCD website:

In the fight against chronic disease, every American has the responsibility – and power – to make healthy lifestyle choices. But the efforts of an individual are often helped or hindered by factors in their environment, such as their workplace, family, and community at large. The PFCD recognizes that chronic disease prevention requires both individual effort and community support to successfully fight the rising epidemic of chronic disease.

Personal Health
Good health comes from making smart choices about the way we live.

Family history plays a role in your health and your risk of developing chronic illnesses. But medical experts say lifestyle decisions and the choices you make about the foods you eat, the amount of exercise (and rest) you get, and other behaviors like smoking can also play a large role.

Doctors tell us that an active and healthy lifestyle can help you prevent most chronic diseases.

With a commitment to staying healthy, you can do a lot to help prevent most chronic diseases. Most health professionals provide the following guidelines for good health:

  • Get appropriate medical care, including preventive health care
  • Get the right amount of exercise
  • Eat healthy foods
  • Get regular health screenings (because many diseases can be better managed if caught early)

Family Health
Good health starts at home. Parents can set an important example at home to help their children maintain a healthy lifestyle. Talking to your family about healthy behaviors can help them learn the appropriate ways to maintain a healthy lifestyle.

There are many ways to incorporate healthy living into your family's schedule:

  • Include physical activity into your daily routine, and get your family involved. Take a family walk in the morning before work or school or in the evening after you've had dinner.
  • Encourage your family (especially children) to drink water or milk instead of high-sugar fruit drinks and soda.
  • Serve a variety of healthy foods at meals, and keep nutritious foods in your cabinets.
  • Limit the amount of time your family spends watching television, using the computer for recreation or playing video games.

Community Health
Community-focused health initiatives can reach a relatively large group of people with messages of health improvement that resonate with residents. Support of the community makes it easier for individual residents to accomplish their health goals. Every aspect of the community, including schools and workplaces, needs to be involved.

A few ways communities can support healthier living are to:

  • Ensure the community infrastructure supports healthy habits (e.g., walking paths, safe playgrounds).
  • Urge local school boards to support physical education and better nutrition in schools.
  • Support local community organizations that focus on health and wellness.
  • Make wellness a community priority by creating an environment that supports and promotes healthy behavior.

Workplace Health
Businesses around the country are reaping the benefits of workplace wellness programs. Increased satisfaction, reduced absenteeism, and lower health care costs are just some of the many benefits of these programs.

Why should employers care about wellness?

Employers can improve their bottom line and increase efficiency by focusing on ways to enhance their employees' health and wellness. Providing good health coverage is an important building block to good employee health. With health care costs rising due to preventable and manageable chronic diseases, more focus on preventive health is needed.

Workplace wellness programs can provide value in many different ways to a

  • Cost-benefit analyses show wellness programs make economic sense for the company by better controlling health care costs. Every dollar spent on health promotion led to an average reduction of more than $3 in health care expenses.
  • Wellness programs help reduce absenteeism and presenteeism** (being present at work but too ill to perform well). As a result, employee productivity increases.
  • A commitment to health and wellness in the workplace is correlated with higher employee satisfaction and improvements in morale.
  • Spending is lowered** with an average 26% reduction in health costs and an average 30% reduction in workers' compensation and disability management claims.

**These references are drawn from Partnership for Prevention® which is a national membership organization dedicated to building evidence of sound disease prevention and health promotion policies and practices and advocating their adoption by public and private sectors.

When I tried to find a main office address for Partnership to Fight Chronic Disease, I found an APCO contact number instead. APCO is the same company which helped launch the Partnership for Prescription Assistance of which I am hardly a fan. Just an interesting tidbit of information to ponder.

(P.S. The whole "workplace wellness" issue is one deserving further discussion. )

But before PFCD, there have been and are other organizations grappling with chronic illness. Some of these include:

Partnership for Solutions - Better Lives for People with Chronic Conditions
National Chronic Care Consortium
Improving Chronic Illness Care

From the Partnership for Solutions website:

Chronic Conditions - Definition
A chronic condition lasts a year or longer, limits what one can do and may require ongoing care. More than 125 million Americans have at least one chronic condition and 60 million have more than one condition. Examples of chronic conditions are diabetes, cancer, glaucoma and heart disease.

Common Problems
Many with different chronic conditions face common problems, including very high costs that are often not covered by insurance, and a complex health care system that it is difficult to use. Both private insurance plans and government programs are not easy to navigate.

People with vastly different chronic conditions face similar challenges in getting the care and support that they need, including:

  • Enormous medical bills that can ultimately lead to bankruptcy for some families;
  • Difficulty in keeping a job or even working at all, a challenge that extends to caregivers who must give up work to care for their loved ones;
  • A complex and difficult-to-use health care system in which physicians, social agencies, and others do not always work together on behalf of patients.
As traditionally practiced, the American model of medicine excels at treating emergencies such as injuries, heart attacks, and appendicitis. American medicine is less effective at providing care over an extended period of time for one or more chronic conditions. Moreover, American health care is rarely able to carefully tend to the basic needs of patients such as bathing, dressing, preparing meals, or transporting people to and from medical appointments. The health care system is also not equipped to design and alter physical environments to maximize a person's ability to function independently.

Growing National Problem
The number of people with chronic conditions is growing at an alarming rate. In 2000, 20 million more people had one or more chronic conditions than the number originally estimated in 1996. By the year 2020, 25% of the American population will be living with multiple chronic conditions, and costs for managing these conditions will reach $1.07 trillion.

This chart projects a steady rise in the number of people with chronic conditions. The number of people with chronic conditions is projected to increase from 125 million in 2000 to 171 million in the year 2030.

The current health care system excels at responding to immediate medical needs such as accidents and severe injury and sudden bouts of illness. American health care is less expert at providing ongoing care to people with chronic conditions and improving their day-to-day lives.

What accounts for this dramatic growth in chronic conditions?

  • The large population of baby boomers is aging, and their health is beginning to deteriorate.
  • Advances in medical science such as vaccines and antibiotics have extended our life span, leaving more people vulnerable to chronic conditions related to aging such as cancer, Alzheimer's disease, osteoporosis, heart disease, as well as the limitations brought about by strokes.
  • At the other end of the age spectrum, some chronic conditions, such as asthma and diabetes, are on the rise.

But this discussion would be incomplete without some external validation that the discussion of chronic disease has very little to do with multiple sclerosis or rheumatoid arthritis. Dr. Gross, a neurologist who blogs for Health Central, had this to say recently.

MS and Like Diseases Get Short Shrift In “Health Care” Debate by Dr. Gross

But as I have noted previously, "What does this have to do with expensive disease care that is involved in a disease such as Multiple Sclerosis (MS) that, except in a very general sense, has nothing to do with carbs, jumping jacks, cholesterol, or the American penchant for gorging down a wheelbarrow full of Chicken Nuggets with a side bucket of fries as a prelude to Type II Diabetes and Obesity?"

Beyond that of course is the example of the late John Ritter whose unfortunate early death had to do with a ruptured thoracic aneurysm, not a marquee problem at a Wal-Mart clinic. Of course not- the diagnosis and treatment of a thoracic aneurysm like that of Multiple Sclerosis requires high-powered specialty care!!!

We must have universal affordable specialty care for all patients with MS, an issue largely different from smoking cessation programs offered by HMO's. The former is a big-ticket item for seriously ill people, afflicted with a disorder whose onset had nothing to do with life style. The latter is a laudable health improvement low budget project, some kind of public service announcement that's personalized.
Discussing chronic disease and prevention is a smoke screen for examining the real needs for health care reform in America. Any movement which ultimately will be used to boost the business of "disease management" is suspect in my book. While I agree that we each need to strive to lead a healthy lifestyle, both physically and emotionally, I do not believe that the efforts of the Partnership to Fight Chronic Disease will spark that sense of personal preservation within each of us.

Saturday, March 29, 2008


Like a number of bloggers it appears, I received a request to read and review SHAKEDOWN by Joel Goldman. At first I thought - wow, somebody thinks that I actually have readership - and second I thought - well, she must think that I'm eloquent if she wants ME to review a book. Then, I discovered that I wasn't the only one. Then I decided - sure, I'll get a free book out of it and maybe it'll be a good one.

The reason we MS bloggers were targeted is due to the uncertain nature of our disease, the often physical limitations experienced due to the disease, and most importantly the fear of telling others about our MS lest it jeopardize our relationships, job security or retirement plans. You see the author, Joel Goldman, has a movement disorder and he weaves issues surrounding a yet-to-be-diagnosed neurological condition into the story, a condition which threatens the main character's job and personal relationships.

Here's the Rundown:

Best-known for his Edgar and Shamus nominated Lou Mason thrillers, Joel Goldman's SHAKEDOWN is the launch of a new series featuring Special Agent Jack Davis. In the author's words, Davis is "a man in mid-life whose mission is to give a voice to the voiceless victims of crime, to speak for the dead."

Jack Davis is also hiding a secret from the world that may jeopardize his career --- a worsening movement disorder. When his secret is discovered while working a crime scene, Jack finds himself dealing with the fallout on both professional and personal levels, changing his life forever.

In SHAKEDOWN, Davis must come to terms with what is happening to his body while trying to do the work he is meant to do: solve crimes. Accepting his body's changes while trying to work is an all too familiar struggle for author Joel Goldman: Goldman himself has been diagnosed with a movement disorder.
From the Back Cover:

The lives of three people collide over mass murder at a Kansas City residence that Special Agent Jack Davis has carefully staked out for weeks. Kate Scranton, whose job is spotting lies for high-priced courtroom lawyers, is convinced that mild-mannered Latrell Kelly knows something about the crime. But Latrell is hiding far more than Kate can guess. And with Jack half-blinded by an imploding personal life, and someone on his own side leaking crucial information, they're headed straight for the ultimate danger zone...
What Critics are Saying:

"[SHAKEDOWN is] Goldman's latest terrific thriller.... Goldman's surefooted plotting and Davis's courage under fire make this a fascinating, compelling read." ---Publishers Weekly

"SHAKEDOWN is a really fine novel. Joel Goldman has got it locked and loaded and full of the blood of character and the gritty details that make up the truth. Page for page, I loved it." ---Michael Connelly

"SHAKEDOWN is a chillingly realistic crime novel --- it's fast-paced, smartly plotted, and a gripping read to the very last page. Joel Goldman explores --- with an insider's eye --- a dark tale of murder and betrayal." ---Linda Fairstein
Interview with Joel Goldman, from his website:

Q: So what is Shakedown about?
A: Jack Davis is a fifty-year old FBI agent who is haunted by the murder twenty-years ago of his young son. His marriage is crumbling and his daughter is in love with an undercover FBI agent who may have crossed the line and dragged her with him. Kate Scanlon is an expert in the facial action coding system that reveals the truths hidden in micro facial expressions that flash by in the blink of an eye. When five people are slaughtered in a crack house Jack has under surveillance, his world explodes. He turns to Kate for help in tracking the killer and gets more than he asked for.

Q: Jack Davis is a departure from the Lou Mason. What makes him unique?
A: Jack Davis is a man in mid-life whose mission is to give a voice to the voiceless victims of crime, to speak for the dead. In the midst of a murder investigation, he loses control of his career, his family and his body. He has to dig deep to hold on to the people he loves and the world he believes in.

Q: How does he do it?
A: Jack only trusts the hard evidence. He has to open himself to the more subtle clues of human emotions that are hidden behind our facial masks.

Q: Is the facial action coding system real?
A: Absolutely. Dr. Paul Ekman, a psychologist, developed it in the 1970’s. Check out his website, for more details.

Q: Will we see Jack Davis in another thriller after Shakedown?
A: I'm working on a sequel to Shakedown titled The Dead Man.

Q: Anything else in the pipeline?
A: I wrote a short story titled Knife Fight that will be published in 2008 in a mystery anthology sponsored by the Mystery Writers of America. Linda Fairstein is the editor and I'll be in great company.

Q: You have a page on your website called Crime Scene. What's that about?
A: One of the things that make any story come alive is where it takes place. That's certainly been true for me. My books are set in Kansas City, my hometown. Great writers make the setting where the story occurs as real and influential in the story as any character, whether it's a neighborhood, city, county or region. With Crime Scene, I'm going to explore those places and how writers bring them to life and ask readers to share their favorites character places with me.

Q: What drives your stories?
A: That's a great question and it took me about two and a half books to figure that out. About midway through my third book, Cold Truth, I realized that I was writing about families and their conflicts as much as I was writing about murder and mayhem. The conflicts that stem from family relationships are textured, nuanced and varied. It's impossible to run out of ideas. All I have to do is ask myself what happens when things go wrong.

Q: Do you start with the characters or the plot?
A: I start with the names. I create an inventory of male and female names, usually from newspapers and obituaries. Once I get started, I don't like to flop around trying to decide a character's name. After that, I focus more on the characters because their strengths, weaknesses and relationships will drive the plot.

Q: What advice would you give to someone who wants to be a writer?
A: Just do it. The hardest thing for some people to do is to start. Writing a poem, a story, a play or a book seems overwhelming. Many people have told me that they want to or plan to write a book but they never do anything about it. If writing really is in your blood, the hard part won't be starting. It will be stopping.
More details are available - SHAKEDOWN and Joel Goldman.

So here's what I thought:
Keep your friends close and your enemies closer.

Jack Davis, an FBI agent in Kansas City, MO, is five years from retirement when an unknown medical problem threatens to end his career. Problem is Special Agent Davis has been getting the "shakes" more frequently and with more intensity while he has attempted to hide it from those around him. The cause of the seizure-like shakes is unknown and Jack is reluctant to go to the doctor, presumably for fear of what the doctor may say is the cause of the problem.

The night that someone enters the home of local drug dealer, Marcellus, a house which has been under FBI camera surveillance, and proceeds to brutally murder five people in the house, Agent Davis is seen suffering from one of his "shaking" spells in the backyard of the crime scene. Almost immediately, Agent Davis is taken off active duty, must surrender his gun and badge, and is placed on medical leave. This all happens near the beginning of the book and we know who the killer is. So where's the murder mystery or the thrill of the chase?

Well, as it turns out, the mystery lies not in solving this particular case but in discovering who is leaking information to whom regarding a much larger ongoing investigation. While Agent Davis is supposed to be on leave and off the case, he can't stay out of it and enlists the help of a local Kansas City, KS, cop to conduct some independent investigation of his own. All the while, his secret regarding the "shakes" is now known to those around him, including coworkers, friends, and family, threatening his career and his personal relationships.

Joel Goldman manages to keep the pace throughout the book, only reveiling the key answers to all the secrets very much near the end of the book. The answers truly are a surprise...and I won't give you any clues. But I will let you know that SHAKEDOWN is not a "chick flick" book. There are no steamy love scenes and only a hint of potential unfulfilled desires. Does that make it a man's book? I don't know. The focus of the book is on the process of solving the crimes. In total there are a dozen murders, a couple of missing people, secret hideouts, dead drug dealers, emergency surgery, and an adorable adopted pup.

The book was an easy read, fast paced, and has an intriguing story. Some questions remain unsolved, thus providing material for a sequel. Basically, SHAKEDOWN provides a nice introduction to the main character FBI Special Agent Jack Davis and the important characters in his life. I plan to pass my copy onto my dad and I think that he will enjoy it.

April 1, 2008
384 pages; $6.99
ISBN-10: 0786016108
ISBN-13: 978-0786016105

If you are interested in Joel Goldman's books, I added a widget below where you can go directly to Amazon to purchase this or any other of Goldman's other crime mystery novels.

Please note that this is not a paid review or advertisement, it is however my opinion. If you were to purchase one of the books I have included on the sidebar, I would receive a very small percentage as an Amazon Associate (full disclosure).

Thursday, March 27, 2008

Carnival of MS Bloggers #7 - Creativity Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Baraka discovers the gift of sight, even as she loses the ability to walk fast in A Storm of Blossoms.

Spring is flirting with San Francisco: a rare Mediterranean day warm enough for pale citizens to dive onto beach sand; followed by one choosing hourly between sun and fog, yet still somehow too warm for wool coats or warm scarves. The body sweats and chafes in layers, then shivers in the nibbling wind.

Trees are bursting into bloom everywhere, but if I was walking at my normal, fast pace I would miss all but the most showy blossoms. I realize that yet another reason that God has slowed me down to a shuffle with this stress fracture is to share that shy tree on the corner, bare limbs just beginning to bud tiny emerald leaves and pearl-sized blossoms.

Fully functioning, I would have swept past unseeing; today, I stood in awe, drawn in by each exquisite detail. Subhan’Allah. I don’t have the choice to walk fast right now, but I do have the opportunity to slow down and see. At a quarter of my usual pace, I’m amazed by how much I usually miss.

Shauna demonstrates a marriage of science and art in Chance Favours the Prepared Mind.

When I was very little, my mother would take me to parks to play. One day, I ate an ant. I just picked it up and popped it in my mouth. My mother was horrified! What if I got sick? So she ate one, too. If I got sick, then she would get sick as well and be able to tell a doctor what had happened.

Of course, neither of us got sick.

I continue to be fascinated by creepy crawlies, no doubt in part to my early education in the scientific method and the results obtained from those experiments [read full post for details]. I have handled all sorts of creatures in the wild, including bees, with no fear, and only a healthy respect for stingers and possible bites. I have never been stung or bitten. I suspect that's only due to luck, not that I'm a sort of entymological Dr. Dolittle.

I pick up worms in the parking lot and put them somewhere safer. I catch spiders and other critters in my apartment (not often) and release them to the outdoors. A month ago, I found a flour beetle larva, in my rice (so maybe it's a rice beetle larva), and put it in my bug container which has a couple of magnifying windows on it. I forgot all about it until yesterday. I took the top off the container and prodded the little thing. It began moving so I put a little flour in there with it and am hoping it becomes an adult beetle.

I have a bug kit I take with me when I'm on the bike. It has a number of baggies and a couple of glass jars in it for specimens and a little fish net to catch the elusive ones. "Chance favours the prepared mind". Of course, Louis Pasteur wasn't thinking about collecting bugs when he said that, but it applies.

I have been known to go to a local gas station late in the evening with a bigger net and baggies. There are some pretty big moths and other winged wonders that hang around the lights and if I'm lucky will sometimes find intact dead ones around the pumps.

"Then what?" you might ask. They go in the deep freeze. And after a couple of days I take 'em out, thaw them, and then mount them. No stale cardboard and pins for my bugs though. I put 'em in clocks, watches, or wooden shadow boxes. It's more artistic. Science and art together.

Read Shauna's full post here.

"Lost in Feelings" - a poem by Herrad

Lost in feelings.
Feelings too strong to understand except to feel more helpless. Hopeless sitting by the kitchen table, its a grey early morning once again confronted with all I can't do. Fucking hopeless feelings of despair floods of tears, Life is all on top of me. Feel submerged. Almost like being stranded except I am still here right in the middle of it all. Yet lost, lost in feeling lost in pain and fear. Still can laugh still can have fun but its all so hard.

Nearly my birthday.
This year I don't really want to know it's my birthday feel too raw. The ms so new surely it could go away for my birthday. Surely ms and birthdays don't go together. Surely my birthday present will be no ms.

Feel like a symptom.
Feel more and more like a symptom not like me. Too involved in bodily processes. How's my bladder today. Can I have a crap? These things once were taken for granted now they are major facts of life. Its no longer what shall I wear today but how often have I been.

Need some intimacy now I have lost closeness of sex. Can't feel sexy safely. Masturbation causes spasms of such intensity that they threaten to throw me out of my wheelchair. These are not pleasant spasms but out of control like the kick of a mule.

Shower time.
It's not fun anymore having a shower. Need help, can't do it alone anymore. First I wheel into the shower it's a narrow doorway and a small steep incline. Steer past the hot radiator. On go the brakes and I heave up out of the chair. My darling quickly whips my knickers down my legs as I fall back into the chair. Legs trembling, spastic as fuck. Over to the shower seat. Heave myself up again and sideways into the shower chair. Spastic shivers through my body as the water hits my body almost can't control it and fall off the chair. With my darlings help I wash and rinse off then get dried. Its all time consuming and painful for us both in different ways. Shower time is not like it was before.

Getting dressed is such fun.
Rage rage rage but that won't put my clothes on. Sitting cursing in my chair. Thrown my knickers on the floor, not me but the spasm in my foot. Lean over to do it again and nearly fall on my head. It's time for help as I realise I can't do it alone.

Using knitting to deal with MS annoyances, Megan shares how forgetfulness can be both scary and humorous in When life throws you lemons stab them with your knitting needles!!
I love knitting, I love it. I love reading about it, I love doing it, I love yarn, needles, stitch markers, row counters, charts, darning needles, blogs, Ravelry, patterns...etc....I forgot how much I loved it and how much I need it in my life. Thanks to Ravelry, I can track projects that I'm working on and set goals for myself of new projects I would like to try. So that's the plan for now. I've currently got a few projects that I'm working on and a few projects that I've got the yarn picked out for. My ultimate goal is this! I know its a little scary but there are a lot of things in life that are a little scary, or a lot scary and I have to constantly remind myself when the self doubt creeps in that all knitting is just made up of two stitches and I only have to work on one stitch at a time.

Another knitter makes a bold move and publicly announces her recent diagnosis in Sheila's *DreaMS Team.
Leading up to the diagnosis were the last six weeks of 2007 (incidentally the first six weeks of my marriage) during which time I tried holistic and non-traditional therapies thinking that the symptoms I was experiencing were probably just arthritis or issues relating to my spine with which I have had trouble in the past.

By the beginning of January, we knew it was something else. That's when we started down the road to a medical diagnosis. My symptoms were mostly sensory meaning that my feet were numb to the touch but worked okay (my right leg got a little weak but it was only like that when I was tired or hot), I had something called the MS hug which felt kind of like a tight band around my ribs, and occasionally, I had tingles in my legs and fingers that felt like they'd simply fallen asleep and were waking back up. For the most part this was more annoying than anything else.

Now we know what we're dealing with.... It's not the greatest thing to have a chronic disease like this but it's certainly not the worst thing either. MS won't kill me or shorten my life. It will mean that for the rest of my life, I'll be redefining "normal" and I can handle that.

I'm nothing if not a tough cookie so I know I will be able to adjust as needed. It is what it is, I will have good days and bad and hopefully will always remember to stay positive.
*Do note that the last two letters of the words dreams are M and S!

Even bolder still and bravely discussing problems of a most personal nature, John-Mark contemplates To Pee Or Not To Pee...
It's funny, when you have a relatively mild form of MS like I's easy to just lie to yourself that nothing really is wrong with you....but then something happens.

I've had problems for the last year or so with my waterworks.... and after months and months of me putting it off, I've got an appointment next week at the Continence Clinic to teach myself ISC. This means Intermittent Self-Catheterisation, maybe two or three times a week, and in layman's terms for those of you out there not familiar, involves sticking a tube up areas that have never seen the light of the sun.

As a male, apparently it's alot easier process to go through, but takes a lot longer tubing for obvious reasons.... Comments made in an understanding way like, "it might hurt the first time, and when you get to the Sphincter muscle before the bladder, pushing it through that might hurt alot and you might pass out" didn't exactly help my enthusiasm for this treatment, but needs must.

I guess most guys wouldn't have a problem flopping out their member in front of a female nurse, but I'm a little different that way, it will be a highly embarassing situation and thoughts of a sexual nature will be the last thing on my mind when I attempt to stick a tube up.... actually never mind the description, I feel nauseous just thinking about it!

Needless to say, I'm not looking forward to it, but I know it will be better for me in the long run, and hopefully be a relief in more ways than one.

- An Extremely Nervous Guy

Diane asks, "Do you remember that anti-drug advertisement with the fried egg? You know the one: "This is your brain. This is your brain on drugs."

This little quilt makes me think of my brain ~ my brain with MS!"

Let’s say those dizzying squares of psychedelic fabric are nerve cells in my brain or spinal cord. Some of them have been damaged by my body’s own immune system. The resulting scars or lesions impede the messages from my brain to other parts of my body. Sometimes these messages (indicated by black sashing strips) get garbled; sometimes they don’t get through at all. In other words, my brain might want to quilt, or walk, or eat soup with a spoon, but if the message can’t reach the appropriate muscles in my body, it ain’t gonna happen!

See those wonky quilt blocks? They represent symptoms I deal with every day: numbness and tingling, poor balance, weakness in the limbs, muscle spasms, fatigue, sensitivity to heat, loss of bladder or bowel control (too much information? Sorry.) Just as each of these quilt blocks varies a bit from the others, my symptoms may vary from day to day. Not only are they unpredictable, they might be totally different from those of someone else with MS.

Let’s see, how can I tie in that big uneven purple border? I know--those strips symbolize my support team: my family, friends, and medical staff. Their vigilant assistance with my personal care and daily needs as well as their unfailing love frame my life.

Boy, I never thought I’d be using one of my quilts as a medical metaphor. I’m just glad it wasn’t Human Reproduction Awareness Week!

Having previously blogged on the issue of Social Security Disability, Barbara encourages a little grassroots activism from those of us disabled and those of us not yet disabled in PURGATORY FOR THE DISABLED.
Seems the MSM [main stream media] is finally answering the clue phone.

Write your lawmakers to speed up the Social Security Disability process and correct fatal flaws in the approval system. Just because you aren't disabled, doesn't mean you might not be tomorrow. I am a prime example of how fast your life can change. Please.

To read Barbara's full article, go here. You will be glad you did.

And my personal favorite because it's beautiful and it comes from my hometown, Steven shows us the Oklahoma State Capital.

The Oklahoma State Capitol held a Red Cross Month event this week. My group held a blood drive in the rotunda area of the Capitol building. I decided to take advantage of the situation and shoot some photos. I think this was my favorite of the day. We didn't see many donors but I think everyone was tied up with the day's events. PR wise, it was a great day, though. And, I got to take some photos so a good day all in all.

The next Carnival of MS Bloggers will be hosted here on April 10, 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 Tuesday, April 8, 2008.

Thank you.
Comments for this post.

Tuesday, March 25, 2008

When Will We Have the Option of Generic MS Self-Injectable Drugs?

So you learn you have developed multiple sclerosis - MS.

And now you have an explanation (or source of blame) for all of the bizarre symptoms and unexplained weaknesses or difficulties you have noted from previous years...that foot which 'fell asleep' for no good reason and made you trip over nothing...that time your left eye went blurry and hurt so bad, but that you thought it was all of the late night studying in the library getting to you...or that after spending the day on the beach, you're legs got so tired and heavy, but also kinda buzzy...really weird stuff that just kinda went away on it's own. Now you know it was the MS.

"But, doc, will I die from MS?"

"Oh, NO!!! MS is not fatal, but it is a progressive, degenerative disease which can cause various levels of disability and symptoms. The progression is highly individual and it is near impossible to predict the course of the disease."

"Well, what do I do? Do I just sit back and let it progress?"

"The good news is that we currently have several DMD (disease-modifying drugs) which are helping patients to experience fewer relapses and subsequently less disability as the disease progresses."

"OK, great! What do I take for it doc? Bring on the pills."

"The DMDs are not available in pill form. They are drugs which you self-inject anywhere from daily to 3-times a week or once a week, under the skin or in a muscle. And there are drugs which can be infused intravenously once a month, and on the horizon is a drug which could be infused twice a year, if it's shown to be effective in current trials."

"Wait a minute - you mean I have to use needles?"

"Yes, but we will show you how and it will just become one of those things you do to combat the MS. Studies show that the sooner DMD therapy is started, the better the long term outcomes will be. Patients who delay treatment do not seem to catch up to those who began earlier, so it is now recommended that patients begin DMD therapy after a Clinically Isolated Syndrome (CIS)."

"OK, doc. So what are the drugs? How much do they cost? And do you think my insurance will pay for them?"

"The drugs are expensive - anywhere from $23,000 to $30,000 each year. And your out-of-pocket cost will depend upon your health insurance policy. If there's a problem with insurance, we can try the drug company's program for assistance because absolutely NOBODY can afford to pay for these meds upfront."

"Good grief. That's as much as my mortgage payments. This stuff better be worth it. I'm curious, are there any generic versions available?"

"No. The current DMDs are in a class called biologics, which are drugs derived from living cells and are more difficult to manufacture then small-molecule drugs like Zoloft or Lipitor. The DMDs are not a cure, but they do help patients delay and limit disease progression. Finding the right one for an individual patient, however, can be an effort of trial-and-error."

"So, basically, the drugs may or may not work for me, depending. I have to give myself shots at home. And they cost an arm and a leg. Is that all?"

"That - and - Congress just might pass legislation which would prepare for a regulatory pathway to approve generic versions of biologic drugs. These drugs are referred to by many names: biogenerics, follow-on proteins, follow-on biologics, generic biotech drugs, copy-cat biologics, etc."

The terms are many but the drugs are few, and only being approved right now in Europe.

The discussion above is purely fictional, but does represent common thoughts around here at Brass and Ivory.

Recently, there has been more discussion regarding biogenerics in the media and around the blogosphere following the recent House bill introduced by Reps. Anna Eshoo (D-Calif.) and Joe Barton (R-Tx.). (Read a summary of the bill, or the complete text.) A corresponding Senate bill on biogenerics passed through the Health, Education, Labor and Pensions Committee last June (2007).

Excerpt from the WSJ Healthblog:

Want Generic Biotech? You Might Wait 14 More Years
(March 14, 2008) Posted by Heather Won Tesoriero

Not surprisingly, the Biotech Industry Organization (BIO) is delighted with the bill, which the group says “includes essential elements to ensure that any such pathway follows two critical principles: namely, protecting patient safety and ensuring continued innovation.”

The Generic Pharmaceutical Association is livid. Under the
provisions of the bill, “it will be decades before patients have access to affordable biogeneric medicines,” the group said in a statement. “For the countless patients who are choosing between paying for their medicines and putting food on their tables, waiting decades is simply not an option.”

For the past several years, biotech companies and generic drug makers have been engaged in a tug of war over the issue of copycat versions of biotech drugs, known variously as biogenerics, biosimilars or follow-on biologics. Unlike pills and syrups, which are relatively simple to copy, biologics are derived from living cells and are trickier to manufacture. Almost everyone seems to agree that a smoother regulatory pathway is needed to make available cheaper yet safe equivalents to brand-name biotech blockbuster. But the details are almost as hard to come by as a good line of Chinese hamster ovary cells, workhorses of biotech drug manufacturing.

Excerpt from Health Business Blog:

Another silly bio-generics bill
(March 17th, 2008) by David E. Williams

Two Congressional Reps have introduced a bill to create a pathway for generic biopharmaceuticals. It seems to me like a big waste of time. The bill has the following key provisions, according to Kaiser Daily Health Policy Report:
  • 12-14.5 years of market exclusivity for the original product before generics can appear
  • Clinical trial requirements for follow-on products, which could be waived by FDA (I don’t have more details on this yet)
  • Exempting “select agents and toxins” like Botox from competition, for “national security” reasons. (Maybe it will keep the enemy wrinkly-faced?)
  • Granting the FDA the authority to declare medications as interchangeable

I can’t imagine how this bill would have any significant impact on drug costs. It seems likely to severely limit the number of biotech drugs facing serious competition, which will keep prices up. The only beneficiaries will be brand name biotech companies and a few generic biotech companies who get drugs approved and enter into an oligopolistic market environment.

As I’ve said before, a better idea would be to simply regulate the prices of biotech drugs once they’re off patent (or have been on the market for a certain number of years). Advantages of this approach include:

  • Guaranteed, predictable savings
  • Elimination of risky and expensive clinical trials of follow-on products, with their potential to harm patients
  • Limitation on the breadth of FDA oversight. Fewer new manufacturing facilities makes it easier for FDA to keep up
  • Higher manufacturing capacity utilization for brand name companies, who will retain 100 percent of the market
The only losers will be generic biotech companies. Since that industry doesn’t really exist yet, I don’t think it’s such a problem.

Excerpt from the WSJ Healthblog:
Rising Spending on Specialty Drugs Leads to Pushback
(March 20, 2008) Posted by Joe Mantone

Specialty pharmaceuticals are among the biggest drivers of rising health costs, and, not surprisingly, the folks picking up the tab are searching for ways to rein in costs, the WSJ reports. Employers, health plans and pharmacy benefit managers are pushing Congress for the creation of a clear pathway for generic biotech drugs; reinforcing rules requiring cheaper therapies; and backing pay-for-performance projects based on how well the drugs work.

The efforts are being made as growing evidence shows increased specialty-drug spending, which could reach $99 billion in the U.S. by 2010, would be nearly double the $54 billion spent in 2006, according to Steven Miller, chief medical officer of Express Scripts, which manages drug benefits for health plans that cover 55 million people.

Drugs that are considered “specialty” include a vast array of biotech products and are used to fight such diseases as cancer and multiple sclerosis. Bills creating a clear regulatory pathway for FDA approval of biotech generics are pending in Congress, but biomedical companies are fighting to protect their exclusivity.

To combat the growth in spending, PBMs such as Medco Health Solutions and Express Scripts are enforcing rules that spell out drug selection, usage and dosage. Insurer Aetna, is exploring a pay-for-performance model in which the price paid for a drug would be tied to how well it works. Similar plans are used in Europe. In the U.K., for instance, Johnson & Johson’s Velcade, for multiple myeloma, now comes with a money-back guarantee.

“Some people have spectacular results” taking pricey biotech drugs while “others have no results,” says Edmund Pezalla, national medical director of Aetna Pharmacy Management.

Excerpt from Eye on FDA:
Turning Down the Pipeline on Biotechnology
(March 19, 2008)

On the Ides of March, Genetic Engineering and Biotechnology News (GEN) published an article by Ronald A. Rader, President of the Biotechnology Information Institute that provided an overview of the product approval rate focusing solely on biologics.

For a long time, one has heard of the promise of biotechnology - in the case of medical treatments - products made from living cells rather than chemical compounds. However, this article points out that the approval by FDA of biopharmaceutical products has declined in recent years from a ten-year span that includes 1996-2005 where an average of 16.6 approvals occurred each year, to only 12 and 11 in 2006 and 2007, respectively.

The biotechnology pipeline is supposed to be crowded with promise and a large number of investigational products. What are the prospects for getting these products approved and to market?

Excerpt from Terra Sig Science Blog:
Looking for expert commentary on generic "follow-on" biologics (March 24, 2008) by Abel Pharmboy

Last week we spent some time discussing the shortcomings of the generic vs. brand name drug debate, focusing on an example of non-bioequivalence between the antidepressant Wellbutrin XL and its generic competitors.

Three days later, I then received an e-mail from one John Procter about a movement to get Washington to move forward on the approval of lower-priced generic biotechnology drugs now that original branded products are facing patent expiration. One source indicates that a $20 billion market value of biological products will be coming off patent by 2015. The US FDA has been reluctant to approve general formulations of biological agents that include protein hormones like erythropoietin and other protein-based therapeutics such as antibodies or antibody-toxin/radionuclide conjugates.
Dear Friend:A virtual monopoly has limited access to biotechnology drugs for too long, costing our families billions at a time when healthcare costs continue to rise. Recent studies show Americans could save $378 billion over 20 years if generic biologics-costly drugs made by manipulating proteins-were available in the United States as they are in Europe. Although biologics are more than 20 times more expensive than traditional drugs, Washington has yet to approve generic versions in the U.S. It is time for Washington to give us a choice of generic biotech drugs to treat diseases such as diabetes, cancer, and Alzheimer's.

My question is this: Is the reticence of US approval for follow-on biologics based on politics, business, actual scientific challenges in producing biosimilar protein therapeutics, or a combination of the three?

And PhRMA responds with a statement regarding R&D:
R&D Spending by U.S. Biopharmaceutical Companies Reaches Record $58.8 Billion in 2007 (March 24, 2008)

America’s pharmaceutical and biotechnology research companies invested a record $58.8 billion last year in the research and development of new life-changing medicines and vaccines – an increase of nearly $3 billion from 2006, according to analyses by the Pharmaceutical Research and Manufacturers of America (PhRMA) and Burrill & Company. The release of the report coincides with PhRMA’s 50th anniversary, which it observes today.

This record R&D investment reflects the continued commitment of America’s pharmaceutical research companies to lead the world in the pursuit of new, life-saving and life-enhancing medicines.

PhRMA-member companies alone spent an estimated $44.5 billion on pharmaceutical R&D last year – up from the previous record of $43 billion in 2006, according to the PhRMA survey. The Burrill & Company analysis shows that non-PhRMA pharmaceutical research companies in the United States spent an estimated $14.3 billion on R&D last year, compared with $12.2 billion in 2006.

Investment in research and development by America’s pharmaceutical research companies grew modestly last year, despite a challenging economic environment and a continuing sharp deceleration in drug spending growth. Although the rate of R&D growth was slower than in prior years, research spending as a percentage of sales remained high. Over the past seven years, America’s pharmaceutical research companies have consistently invested around 18 percent of sales on R&D activities.

As in past years, there are an increasing number of potential new drugs entering clinical testing. Today, there are more than 2,700 medicines in development in the U.S. for nearly 4,600 different indications. Five years ago, there were about 2,000 medicines in development.

U.S. pharmaceutical companies’ dedication to research has been observed by many independent, objective experts. For instance, the nonpartisan Congressional Budget Office (CBO) stated in a recent report: “The pharmaceutical industry is one of the most research-intensive industries in the United States. Pharmaceutical firms invest as much as five times more in research and development, relative to their sales, than the average U.S. manufacturing firm.”

Importantly, this investment has produced results. According to CBO, "Many examples exist of major therapeutic gains achieved by the industry in recent years.... [A]necdotal and statistical evidence suggests that the rapid increases that have been observed in drug-related R&D spending have been accompanied by major therapeutic gains in available drug treatments.”

“America’s pharmaceutical and biotechnology research companies continue to pave the way for the development of future treatments and cures,” said PhRMA President and CEO Billy Tauzin. “Simply put, R&D is the lifeblood of pharmaceutical research companies. Last year’s investment builds on over 25 years of growth in R&D spending as our researchers continue the search for new and improved therapies to tackle a wide range of diseases and conditions, such as cancer, heart disease, HIV/AIDS and Alzheimer's."

The current pipeline includes more than 600 medicines to treat cancer, over 300 specific to rare diseases and more than 275 medicines for heart disease and stroke. This activity dwarfs the pipelines in other parts of the world, such as Europe and Japan, partly reflecting existing policies in the U.S. that foster innovation.

“The preservation and strengthening of these policies – including our market-based health care system, incentives for research and strong intellectual property rights – are critical if we as a nation are serious about maintaining our leadership in pharmaceutical R&D,” said Tauzin. “Patients in the U.S. and around the world deserve no less.”

And the very best excerpt comes from GoozNews:
It's The Prices and Volume, Stupid
(March 24, 2008) by Merrill Goozner

Nearly five years ago, an article in Health Affairs by a group of leading economists sought to explain the wild disparity in health care spending between the U.S. and the rest of the industrialized world. The U.S. has fewer doctors, hospital beds, and nurses per person than other advanced industrial nations, and Americans see their physicians less often.

[...] But if your public plan is part of a mixed system where provider groups like organized physicians, hospitals, drug companies, device companies and durable equipment suppliers can collude and can exercise considerable political clout to avoid price controls, it's hard to imagine achieving the same kind of purchasing power efficiencies here. Look at what is happening in drugs, where numerous best-selling drugs are coming off patent and industry's pipeline of new blockbusters has largely come up empty. This should have been an ideal scenario for lowering overall drug spending.

Yet Medicare hasn't been able to capitalize. The law that created the senior citizen drug benefit specifically forbade Medicare from negotiating lower prices. And in the wake of that decision, Big Pharma has been able to offset its losses to generics by raising prices on its remaining blockbusters. A recent survey by the AARP showed that the prices of the top brand drugs rose 7.4 percent last year. Bottom line: despite the shift to generics, overall drug spending held steady, according to a separate survey by IMS Health.

Meanwhile, the biotech industry has provided the playbook for the next generation of price-gouging, which is taking place in the emerging "personalized medicine" markets for cancer and rare disease therapeutics: never allow generics on the market. The Biotechnology Industry Organization has tied up Congress by arguing that any generic biologic is really a distinct molecule and must, therefore, go through virtually all the same safety and efficacy testing as the original molecule. If Congress goes along (if it ever even gets around to passing a bill), the follow-on biologic will have to be priced like a me-too drug. Consumers may see a 10 percent reduction in price, but not the 40 or 50 percent reduction typical of true generics.

Think what such a law would mean for the 5,000 or so Gaucher's disease patients on Genzyme's Cerezyme, whose travails in trying to hold down their $300,000-per-year costs were documented last week by Andrew Pollack of the New York Times. As a Times editorial on Sunday pointed out, that price tag is "hard to take, given that the federal government did much of the scientific work that led to development of the drug and provided contract money that got the company started."

[...] It's time to amend the title of that long ago Health Affairs article. It's the prices and volume, stupid.

So will MS patients in the US see more affordable, or generic, biologics anytime soon?
Probably not. But patients overseas will. In fact, Teva Pharmaceutical Industries Ltd., the maker of Copaxone and one of the world's top 20 pharmaceutical companies, will be entering the biogeneric market in 2009.

Excerpt from Globes, Israel business news:

"There'll be no company on the planet like Teva"
(March 12, 2008) by Gitit Pincas and Shiri Habib-Valdhorn

At present, the generic part of Teva's activity is larger than the
innovation, the development of ethical drugs, one of these growth engines. "Generics is our core business and will continue to be in the coming years," says Yanai. "We see it as our field of expertise, and it will continue to be the hub of our activity. Alongside it we have an interesting innovation business which is developing, and we have a lot of hopes and expectations for it." Teva has said in the past, that from the end of the decade, it will launch at least one innovative drug every year.

By the end of the decade, Teva will have grown yet another arm - biogenerics, which is, in effect, a hybrid of generics and biology. "It's the next thing in pharmaceuticals," says Yanai. "Drugs based on synthetic-organic chemistry are reaching the end of the road, and we can see this by the falling number of new drugs receiving approval every year. On the other hand, biology, or drugs based on live organisms, are growing at a faster rate. The current debate on this issue is complex. The question isn't settled, including in terms of regulation, but we're gearing ourselves up.

"One of the moves we recently took was the acquisition of CoGenesys which has developed a technology that fuses human albumin with biological molecules. Since the patents in the field will only start lapsing towards 2013-2014, drugs will not become available en-masse until then. We believe, however, that our first biogeneric drug will come onto the market in Europe before then, in 2009.”

In the meantime, the sole best selling drug to come out of Teva’s ethical arm is Copaxone, for the treatment of multiple sclerosis. Sales of Copaxone totaled $1.7 billion in the first quarter, yet despite this some analysts have voiced concern recently that it may have stopped growing. Some even fear a strengthening of Tysabri, the drug jointly developed by Biogen Idec Inc. (Nasdaq: BIIB) and Elan Corp. plc (NYSE: ELN), which was recently recalled following a number of deaths, and returned to the shelves under restrictions.

“Every so often, they tell us that the growth has stopped and that Tysabri will overtake Copaxone,” says Yanai. “Or they think that another player will enter the market and challenge our patents. Well, Copaxone is protected by patent through 2014, unless someone challenges the patent earlier. And even if that does happen, the law prescribes a waiting period of 36 months before the challenger can bring his product onto the market. We are ‘Mr. Generics’, and so when the generic era arrives, you can be sure we’ll already have a few ideas.

“Beyond that, Tysabri is a very strong drug, very potent, with severe side effects. Therefore, it will continue to be prescribed in cases where other drugs don’t work, and they need something strong. It has caused death in the past, and there was also talk recently linking it to skin cancer. Now there’s a case concerning damage to the liver. Tysabri has a limited market and I do not believe its market share will exceed 10%.”

Even in an article discussing the CEO of a drug company, there is a jab aimed at a competitor's product. Silly really. But it does show that money and market share are the important measures of success for the Big Pharma drug companies.

So back to the original question - When will we have the option of generic MS self-injectable drugs?

Answer - Not anytime soon, my dear, not anytime soon.

Monday, March 24, 2008

Stuff that makes life easier....or not.

Today's recommendation comes to us from Orla of Toronto, Canada and Chef'n of Seattle, WA.

The power of peeling right in the palm of your hand! The PalmPeelerTM easily slides on your finger, tucks in your palm and peels anything you can throw at it. This neat little package is dishwasher safe with a stainless steel blade and convenient eyer at the tip.

Orla says:
"This is a product that has been a lifesaver for me. Using a regular peeler causes shooting pain up my right arm. This palm peeler design works much better ergonomically for most peeling duties (not all). Very small round vegetables are hard to peel with it since you need to be able to have a good grip with the other hand to create a decent peeling area.

I also use disposable clear food grade clear plastic gloves to reduce the tingling/numbness etc that happens when working with food i.e. constantly having to wash my hands which aggravates the tingling/numbness..... I buy these by the large box and sometimes use 4 or 5 sets to prepare a meal (and thereby reduced washing my hands 4 or 5 times too AND avoided the tingling etc....sweet). This choice was made by me knowing the environmental/toxic concerns of plastics but, alas, I am cooking more now that I found this solution and that is always a good thing for me.

It has taken me awhile to wake up to the fact that it is easier to find solutions than live in the problem. I have adapted my life, unconsciously, in many ways since the onset of my symptoms. I am now actively pursuing adaptations and the fact that you posted the JarPop is another curious and timely connection. I am looking forward to what others have to contribute too!"
I, too, am interested in what others have to contribute and share.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email.

Sunday, March 23, 2008

"He Is Risen"

Happy Easter Folks!!

This is a picture of my oldest nephew from a few years ago.

I love it so because it expresses pure unabandoned Joy and Happiness.

As a Christian, Easter is a time for rejoicing and celebration -- an affirmation of New Life.

May you find





Easter Day.

Friday, March 21, 2008

MS Blogger Community Project - Revised and Updated

Wow!! I've found at least 200 Bloggers with MS out there actively discussing all sorts of things. 

My hope is to strengthen the connections and bonds throughout the MS blogger community.

Wednesday, March 19, 2008

More MS Bloggers

Spreading Awareness of Depression and Mental Illness

I'm not really sure how I discovered Addy's blog, My Journey with Depresson, but I've quickly grown to appreciate how he so very honestly shares of his experiences and struggles through mental illness.

I'm Addy; 29, a little crazy, a little kinky, and I suffer from bipolar type 1, depression and self harm. They are illnesses I suffer from and are not a reflection of my personality. I'm tired of the stigma surrounding mental health, it's time we gave it a damn good spanking. This is my journey with depression.

Yesterday, he shared a beautiful story....

"It's been a year since the earthquake destroyed me,"

It’s been nearly a year since I was sitting on a beach in Port Fairy burning myself with a flaming stick. A flame which ignited the breakdown and the destruction of everything I had been building for 28 and a 1/2 years.

When I think back on that night, the cool autumnal air breathing softly around me, I remember the tears which streaked my face as I held that stick with trembling hands. The dead mobile phone lying on the beach beside me, a name burned on the LCD panel in my mind. I wonder what would have happened if the battery had still been breathing? I wonder if the person I had wanted to call would have answered?

Would they have listened?

A year before I had been on the exact same beach. A whole 365 days since I’d roamed there, with the intent of dying there. It had been a different phone at the time, but as I sat with the knife held against my wrist it had sparked alive with an echoing ‘beep’ in the still night. A ‘beep’ which sparked alive a long forgotten piece of my soul; enough to drag myself from the beach and spend a fitful night shivering and weeping in a lumpy hostel bed.

In the 365 days which had passed I had managed to rebuild my life. I had fought myself back from hell and only a few weeks earlier had been standing on the metaphorical Butt of Lewis screaming “Ha!” into the wind…(yay for obscure literary references)…having battled myself from the brink of death into a position where I had the world at my feet. Everything was in place; depression had been beaten, self harm overcome, social anxiety had had it’s butt spanked (well, nearly, a few more slaps and it would have been in submission). I had just started working toward my dream of a diploma, a novel was a few edits away from being completed and another started, I had friends for the first time in six years. Aside from glandular fever, which was hardly my fault, I was ecstatic about how much I’d been able to achieve, how much success I had reached.
Then came the double whammy I’ve mentioned before: leukemia diagnosis and being dumped, in the same week. Two shuddering tremors which rocked my foundations - two tremors which caused the earthquake that collapsed all the work. The act of nature which sent 365 days of work crumbling to dust and drove me back to that beach, back to where I had nearly killed myself.

Please do go read the rest. You will be glad you did.

Tuesday, March 18, 2008

Quilting Bloggers Spread MS Awareness

In my continuing search for MORE bloggers with MS, I came across this awareness project led by Karen Dianne of Living Life at LeeHaven.

Are You Aware? Together We Did It!!

For Quilters with MS this week wasn't about raising funds but raising awareness. I've never done anything like this before and without my quilter friends I never could have. I enjoyed reading how each experiences MS. And all the fellow bloggers/visitors from all over the world - literally - Ya'll made it happen!!!

You made it come to life with your fun, participatory attitude. Wow! The questions and interest about MS - it was amazing. We even cleared up some confusion about MS with factoids. We wanted to raise awareness and we did. Plus there was fun with the yummy quilts "On Display."

It was all good. It was more than we planned, too! When embarking upon this first-time-ever adventure I decided "Why Not?" and set up a donation page. Lets put ourselves in the position to donate to the MS Society just in case. Turns out we received donations to the MS Society on behalf of Quilters with MS. That was a huge surprise. Thank you for carrying us over the moon with your kindness.
Some great MS stories were shared such as this one from Yankee Quilter of Scraps and Threadtales.

Wind Damage!

Back in the states several of my coworkers at the college had only recently immigrated to the United and States and they had widely differing commands of the English language and American Culture. Since I had lived overseas for many years I empathized with them and often found myself explaining some of the strangest things.

One hot summer afternoon I was met one of these new arrivals on my way to the parking lot about 4 blocks away. He was in the process of buying a car and wanted to know the difference between lease and buy and why did some of the dealers want to make you take out a loan if you only want to pay cash? OK, so this conversation took a lot longer than the walk. After about 30 minutes of standing in the sun I realized my leg was getting heavy. I started to walk to my car and instead lurched forward. My coworker grabbed my arm and helped me to the car. He was very worried about my driving. "I'll be fine," I told him. "I have MS. Once I'm in the air conditioning I'll be fine." He dropped my arm (really quickly) and without saying anything walked to car and left. To be honest at the time I didn't really make note of this...I just wanted to sit in the A/C!

The next morning his wife, who also worked with me, came to my office. She brought me a little bag with some loose teas in it. "In my country," she said quietly " women drink this when they don't feel well." I thanked her for it and put on the tea kettle. She still looked a bit concerned. "American women are so different." she said, " we would never talk to another woman's husband about her woman problems."

I was a bit taken back. "It is a bit more thank a women problem." I said. "I almost fainted in parking lot," I said a bit indignant. "In our country," she replied sitting up a bit straighter, "we handle our monthlies better."

Oh no! I said I have MS...not PMS!!! I forget sometimes there are parts of the world that there is no or almost no cases of MS. Since this couple was from the Middle East they had never even heard of it! I brought up a website and showed her. "Men," she said as we finished our tea," they can be very stupid in any country. He should have helped you!" I have a feeling he was in big trouble in any language!
And an absolutely fabulous visual metaphor was presented by Diane of Persnickety Quilts.

This is My Brain!!

Do you remember that anti-drug advertisement with the fried egg? You know the one: "This is your brain. This is your brain on drugs."

This little quilt makes me think of my brain ~ my brain with MS!

Let’s say those dizzying squares of psychedelic fabric are nerve cells in my brain or spinal cord. Some of them have been damaged by my body’s own immune system. The resulting scars or lesions impede the messages from my brain to other parts of my body. Sometimes these messages (indicated by black sashing strips) get garbled; sometimes they don’t get through at all. In other words, my brain might want to quilt, or walk, or eat soup with a spoon, but if the message can’t reach the appropriate muscles in my body, it ain’t gonna happen!

See those wonky quilt blocks? They represent symptoms I deal with every day: numbness and tingling, poor balance, weakness in the limbs, muscle spasms, fatigue, sensitivity to heat, loss of bladder or bowel control (too much information? Sorry.) Just as each of these quilt blocks varies a bit from the others, my symptoms may vary from day to day. Not only are they unpredictable, they might be totally different from those of someone else with MS.

Let’s see, how can I tie in that big uneven purple border? I know--those strips symbolize my support team: my family, friends, and medical staff. Their vigilant assistance with my personal care and daily needs as well as their unfailing love frame my life.

Boy, I never thought I’d be using one of my quilts as a medical metaphor. I’m just glad it wasn’t Human Reproduction Awareness Week!

So do go visit these ladies while I go introduce myself.

I love it - our world is expanding.

Monday, March 17, 2008

Stuff that makes life easier....or not.

Today's nifty tool comes from Spring Mill Home Products of Gladwyne, PA.

This was an impulse buy from The Container Store, an item which I found near the checkout stand. You know those little items can be so attractive...

With rheumatoid arthritis and multiple sclerosis, sometimes my hands can get a little weak and I had already been using the edge of a bottle opener to "pop" the lids of glass jars before attempting to twist. My mom used to use the flat edge of a butter knife for the same purpose. So I thought if this plastic gizmo worked, it'd be kinda cool.

From their website:

JarPop! "World's Easiest Jar Opener "

- A gentle lift opens almost any jar
- Pops the vaccuum so lids spin free
- No twisting, no gripping, no wrestling
- Lids stay completely re-sealable
- Patented, award-winning design
- Top-rated by leading consumer magazines

Why is JarPop so revolutionary?
Other jar openers give you ways to apply more twisting force to wrestle a jar open. JarPop, however, completely eliminates the need for force and twisting. By popping the vacuum with one gentle lift, JarPop ends the wrestling match before it begins!

Why are jar lids so hard to open?
Jar lids stick tight because the vacuum inside the jar holds the lid so tightly against the glass. Twisting the lids off is often impossible because of this vacuum. Also, twisting requires great strength and a complex range of motions-- gripping wide lids, holding the glass jar, squeezing, and exerting twisting torque. It stresses every joint in the hands, fingers, wrists, elbows and parts of the arms and shoulders.

How does JarPop open jars?
JarPop changes the whole equation. JarPop pops the vacuum so lids freely off. With just a gentle lift, (no twisting required) JarPop flexes the lid just enough to break the vacuum seal. Air rushes into the jar with a "pop" sound and, voila-- the lid is free to spin off easily. No twisting, no gripping, no wrestling. It's so easy, a four-year-old child can open the toughest jelly jars. It's even fun to use!

Who Invented JarPop?
JarPop was invented in Europe by a Danish engineer whose mother had arthritis and was struggling with jars in her kitchen. JarPop has been awarded 2 United States Patents and has been patented in many other countries around the world. JarPop has won numerous design awards and contests including the prestigious Danish Design Council award for excellence. JarPop has been top-rated by dozens of national publications and consumer reporting services.

Finally, this is not a paid endorsement, merely my personal opinion derived from my personal experience.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email.