Tell Jack Osbourne: We Need You After DWTS

“Be our Jerry Lewis?”

November 20, 2013

As I listened to Jack Osbourne talk frankly about his MS on Dancing with the Stars Monday night, I made a wish. I wished Jack would be an ongoing voice for the multiple sclerosis community after the program concludes. He has created awareness of MS and has inspired so many these past couple of months; however, when the show is over, I don’t want the buzz he is creating to be forgotten.

We have needed a well-known person that could do the same thing for multiple sclerosis that Jerry Lewis did for years with representing and fundraising for muscular dystrophy. But Jack could do even more in a different way, because Jack, unlike Jerry, lives with MS. He is one of us which makes him credible. And people like Jack.

I have been very involved with the MS community since my own diagnosis in the early 1980’s. While research has intensified and MS awareness has increased since then, a basic understanding of what MS really is still critically needed and equally important:

MS is an unpredictable, invisible, interfering, often disabling neurological disorder that has no cure and isn’t fatal or contagious. One that impacts millions of people, lasts a lifetime, and has immense costs associated with it for every citizen of the country.

It is amazing how many persons—even health professionals like nurses, GP’s—who don’t really understand what MS is. (Yes!—I actually gave a presentation about MS to an ER staff of fifty at a local hospital this summer.) There are many misconceptions about MS. (No!—20% end up in a wheelchair, not 100%.) And those of us dealing with this neurological disorder feel misunderstood, ignored, and forgotten. We feel this way because we know:

• On the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good.

• Very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. These symptoms are very disabling.

• Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize. Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

Jack “looked so good” dancing on the show. But then he talked about how his MS unpredictably acted up this past week, how it interfered with rehearsals, and what invisible symptoms he was experiencing (vision, fatigue, shooting pain in his limbs). With the intense stress with the finals in the competition, he is uncertain what will happen down the road with his health. It’s not like having a sprained ankle that will mend after it gets iced, wrapped, treated and rested.

We all know that to survive MS, a tremendous amount of support is necessary, and not only from family and friends. Physical, mental, emotional and financial support. Support for us individually due the difficulties and disabilities we live with; support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects; and support for other programs such as social security disability.

People not understanding what MS is all about hinders the support that we need. MSers can learn to effectively “manage” their illness, not just “battle” it.

There are so many of us out there walking, biking, blogging and volunteering in countless ways to overcome our obstacles caused by MS. But it just hasn’t been enough, fast enough, or unified enough. Increased education and advocacy led by Jack Osbourne—such as hosting an annual united event–would enhance our goals exponentially.

What do you think? Will you ask Jack Osbourne to stay in the forefront and be our MS spokesperson? Or is this just wishful thinking on my part?

www.DebbieMS.com

60 Minutes Broadcast on the Social Security Program (Oct. 6, 2013)

“A Half-Baked Story.”

October 31, 2013

Many of my followers know I have lived with Multiple Sclerosis for 33 years, am considered an advanced MSer, and am confined to a wheelchair. What 60 Minutes did to people like me in that story was a great disservice. It’s been almost a month since that broadcast, and I am still seething so much I felt compelled to write this post. (The broadcast link: http://www.cbsnews.com/video/watch/?id=50156574n)

It is bad enough we fight our daily battles with MS, but our valid fight for Social Security Disability benefits, insurance coverage, etc. just adds to our breaking backs and hearts even more. This same crap goes on with Medicare. I’ve been using a wheelchair for over fifteen years, yet the tedious process I just went through for insurance coverage by Medicare to get a replacement power chair is another example of pure ignorance by people who think how “easy it is” to get these benefits and fraud the system.

I believe abuse is easy for people with money and/or power, with high-end attorneys and politicians backing them and it does happen. But it is NOT so easy for average, middle-income Americans and others who struggle on their own to apply for benefits through difficult requirements over extensive periods of time. Where is OUR voice and OUR side in this Social Security Disability story?

Shame on you 60 Minutes and Senator Tom Coburn (who led this fraud investigation) for telling an incomplete and misleading story!

• I personally know what one has to go through to get disability benefits and it ISN’T easy, even with a lawyer’s assistance. Did 60 Minutes or persons involved with the HSGAC Senators Social Security Disability Fraud Report ask people like me—or the Social Security Administration and other reputable sources or organizations–about the application process, requirements, statistics, etc.?

I would love to go toe-to-toe with anybody about the social security disability process, what it takes to get approval for hard durable medical equipment from Medicare, or what it’s like to have an incurable, progressive, debilitating illness for life and lose a job! And do you think the ADA really protects or helps a disabled or chronically-ill person in the employment world?!

• Yeah, people who take advantage of a well-meant program like SSD and commit fraud is outrageous and hurts people like me. BUT, it’s not fair to damn the entire program, state facts, or create perceptions that are incomplete or inaccurate.
For example, “Widespread Fraud reported in Social Security Administration’s Disability Program”, was reported by both 60 Minutes and Doug McKelway of FoxNews.com (10/8/13). If you go within the Oct 7th HSGAC Senators Release Social Security Disability Fraud Report you will see this statement: “This investigative report details some very troubling occurrences within the Social Security disability review office in West Virginia,” Chairman Carper said. While we don’t have any evidence that this is more than an isolated case, one example of inappropriate actions of this nature is one too many. I welcome the opportunity to hold a hearing today examining a number of issues surrounding Social Security’s disability programs, gather facts and attempt to ascertain the truth.” WHAT?–An ISOLATED CASE??? Here’s the link to a press release of the report: http://www.coburn.senate.gov/public/index.cfm/pressreleases?ContentRecord_id=e2d6986b-9afe-4ac7-84f5-8a66092e8a04&ContentType_id=d741b7a7-7863-4223-9904-8cb9378aa03a&Group_id=7a55cb96-4639-4dac-8c0c-99a4a227bd3a&MonthDisplay=10&YearDisplay=2013

And how about this– Senator Coburn claims the SSD system (like Medicare) needs fixed, is broken, and stated: “What we found was collusion and most likely fraud and extortion in this particular office…we found is that the people inside the Social Security Office, not the judges, but the people actually making determinations do a pretty good job, but then it’s totally ignored by the (administrative law judges)…” and “what we do know is this judge, it appears, didn’t actually look at the cases, just decided them on the record without hearing the testimony from either the attorney, the individual, or Social Security or reading actually the full file on the individual’s claim.” Hmmm—so it’s not the SSA people or the SSA requirements causing the fraud, it’s the judges, lawyers and doctors behind this particular office

• Do you know how damaging it is to those rightfully needing disability to hear programs like 60 minutes and politicians claim that people on welfare or unemployed are going on disability to survive? The term “Secret Welfare System” was used, and it sticks like glue. Yep—all for a good story and personal gain at the expense of people like me.

• Do you know how many of us who are disabled or chronically ill hate being on disability, who want to get better, who want to work? Quite frankly, I am tired of the growing stigma that people would rather receive a government entitlement than work. This broadcast and report just adds to this stigma.

The National Multiple Sclerosis Society, a highly respectable and reputable organization, sent this letter to 60 Minutes immediately following the broadcast:

Messrs. Jeff Fager, Bill Owens and Steve Kroft
60 Minutes
CBS
524 W 57th St
New York, NY

Gentlemen:

CBS’s 60 Minutes deservedly prides itself on high journalistic standards and sharp investigative reporting, and for decades has played a valuable role by exposing serious flaws in otherwise well-regarded institutions and programs. However, the CBS 60 Minutes broadcast on the Social Security disability program that aired last Sunday, October 6th, painted a misleading and inaccurate picture of an important program which serves as a vital lifeline for millions of Americans with severe disabilities and chronic conditions.

We wholeheartedly agree that it is essential to investigate, discover and end abuses and misspending in government programs including Social Security. The Social Security Disability Insurance program is critical for people with disabilities and chronic conditions and we commend efforts to find fraud and prevent those not deserving its services from abusing the system. However, by highlighting only alleged fraud, without the broader context of the millions of individuals who rightly receive and so wholly rely on benefits, your report inaccurately cast the entire Social Security disability program in a bad light.

The single most authoritative source of information on the Social Security disability program’s policies, operations and trends is without question the Social Security Administration itself. A thorough and complete presentation must include the perspective of the agency’s officials and experts. Another valuable and important source of information on Social Security disability programs that was overlooked are people with disabilities themselves, who have been through the rigorous application process, with six in ten being rejected. The Social Security disability standard is incredibly strict; demonstrating eligibility requires extensive medical evidence, and even people with severe disabilities can wait months if not years to receive benefits. Many individuals are denied despite significant disabilities and chronic conditions such as multiple sclerosis (MS), the most common neurological disease leading to disability in young adults.

Media coverage – particularly from a respected program such as 60 Minutes – can have real consequences and can lead to needless harm to an extremely vulnerable population. The wellbeing and economic security of millions of people with disabilities and their families – for whom Social Security disability benefits are nothing short of a lifeline – hang in the balance. We hope that 60 Minutes will supplement its reporting on these vital programs with completeness – by providing needed context, balance and essential facts about the disability program from additional, important sources.

If you have any questions or would like to possibly speak with someone living with multiple sclerosis who receives SSDI, please don’t hesitate to contact me by phone at 202-408-1500 or by email at Ted.Thompson@nmss.org or reach out to my colleague Arney Rosenblat, whose contact information is below.

Thank you for taking time to consider our view on this issue.

Sincerely,

Ted Thompson
Vice President, Federal Government Relations
National Multiple Sclerosis Society

Arney Rosenblat
Associate Vice President, Public Affairs
Arney.Rosenblat@nmss.org

Thank you, NMSS, for speaking accurately and clearly on our behalf. However…

…is anyone listening? Did 60 minutes respond? Are those of us who are truly disabled going to be fairly represented or properly defended? Are there any planned follow ups?

Stayed tuned…or is it just a waste of time and more of the same to come?

www.DebbieMS.com

What is Multiple Sclerosis (MS)?

“The Misunderstood, Ignored, and Forgotten Disease”

April 30, 2012

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise.  We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses.  When we look good, people automatically assume that we are good.  I’m in a wheelchair, but I still look good and completely normal.  If I would use a store’s scooter instead of my own, I would get dirty looks.  I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible.  Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless.  These symptoms interfere with everything we think, say or do.  They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize.   Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all of the time?

Fatigue is the hallmark symptom of MS.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7.  Why?  Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.  Constant fatigue leads to our moodiness or depression.  So when somebody suggests we need to get out and take our mind of things, they truly don’t understand why a couch or bed is more desirable to us.

Many times people without MS are uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore it is often easier for them to just ignore it.

Now this can create a catch-22 situation.  MSers don’t want to complain about it; and non-MSers forget/ ignore the MS or say something that clearly indicates their misunderstanding of it.  Here’s an example of a personal experience:

I’ve lived with MS over thirty years, and my 80-year old mother will still tell me about all of her senior buddies who get out there and bowl and do all sorts of things despite them being in a cast or using a cane.  Or, how she has to get up every night now to pee because “that’s what happens when you get to be my age.”

Well, mom (I think to myself), I have been getting up every night to pee for the last twenty-five years.  In fact, I have had the problems of an 80-year for the last three decades of my life and I am only 57.  Did you lose your ability to have an orgasm at the age of thirty?  And, at least that guy in the leg cast will get it off in a month.  With regard to bowling, I haven’t been able to bowl since I was thirty and not only because I was using a cane.  With my fatigue, balance, and coordination problems, I would have fallen on my butt every time I threw the dang ball.

Then there are the countless misconceptions because of lack of understanding.  “If you had your leg removed and got a prosthesis maybe you would walk again.”  “Did you ever look into surgery on your spinal column?”  Uh, hello…we’re talking the entire central nervous system here!  I actually responded once that “a new brain and spinal cord transplant may help but they haven’t figured out how to do that yet.”

Finally, many of us with MS feel that the news media never give enough attention to MS like they do with cancers, heart, arthritis, etc.  Or if they do, it is usually done with snippets that really create more misunderstanding than understanding of it.  I bet if they understood MS better they would find plenty of interesting stuff to write or talk about.  Or if they talk to any of the half million people and their families in the US that have MS, a really good TV drama series could be launched.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.  That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown. It is generally progressive.  That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.  Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take.  What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses.  But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.  However, there are many things one can do to manage it effectively.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is all about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com