Flying With A Motorized Wheelchair: An Interview

Traveling with a disability can be difficult at times, but traveling with a motorized wheelchair presents special challenges. I learned more about those challenges when I accompanied my good friend Karen on a trip last summer.

Karen lives with primary progressive multiple sclerosis (PPMS) and uses a motorized wheelchair to get around. She was headed to an MS event in Chicago to discuss an upcoming MS medication, and I accompanied her to provide assistance in the airports and to ensure safety in the hotel.

This was my first time traveling with such complex equipment and the experience was truly eye-opening as there was nothing simple about the process. I’ve asked Karen to share what she has learned about flying with a motorized wheelchair as she travels the country as a patient advocate.

Lisa: Karen, how long have you lived with MS and what kind of wheelchair do you use?

Karen: I was diagnosed with MS in February 1996, but distinctly remember symptoms in August 1994. My wheelchair is a Permobil M300 with the capability to recline, tilt, and raise up. It weighs 345 pounds, has headlights and taillights, and can go about 6 miles per hour. I use the chair because of bilateral weakness of my lower extremities and extremely poor balance, which combined seriously limit my ability to walk. The wheelchair gives me freedom and allows me to maintain my independence.

Read this post in its entirety:
Traveling By Air With A Motorized Wheelchair

How To Be Your Best Advocate

Build a coordinated health care team

MS is a disease that can directly or indirectly affect almost any area of the body connected through the central nervous system. Your basic health care team will include your primary care physician, specialty doctors (including your neurologist), an MS-certified nurse, and a physical therapist, as well as your caregivers, partner, and/or loved ones.

You should expect members of your health care team to communicate with each other and share relevant information with each other to provide you with the best comprehensive care. This will reduce the chance of conflicting plans of care or over- or under-utilization of resources. During consultations, it’s important that your providers are open to multi-sided discussions where you are encouraged to express personal preferences and they present informed clinical options.

Neurologists and MS nurses who attend annual medical conferences focused on multiple sclerosis, such as CMSC or ECTRIMS, are more likely to be up to date on recent knowledge related to MS. Don’t hesitate to ask your providers how they remain informed as to the latest research and treatment guidelines. By working together you can establish a treatment path guided by clear goals.

Read this post in its entirety:
How To Be Your Own Best Advocate

MS Advocacy At The State Capitol

The Virginia chapter of the National Multiple Sclerosis Society (NMMS), of which I am a member, led the way for state advocacy across the country in support of policies that will benefit people living with multiple sclerosis (MS) and other chronic diseases, caregivers and their loved ones, and people who don’t have anyone else to speak up on their behalf.

Becoming an advocate is really easy, and you can take action from home by becoming an MS Activist and signing up for federal action alerts from the National MS Society. But there is something special about traveling to your state capitol, visiting the offices of your state legislatures, speaking your concerns, making your voice heard, and witnessing the legislative process in action if you are fortunate enough to sit in on a meeting of your state congress.

Read this post in its entirety:
Speaking with Your State Legislators about MS: State Action Day in Virginia

Multiple Sclerosis Cooling Programs

Multiple sclerosis advocacy organizations want to help you deal with the summer heat and provide free cooling equipment to those who meet eligibility criteria. Different types of cooling vests, neckties, wristbands, bandanas, baseball hats, and more are available. The time to apply for these programs is RIGHT NOW as supplies may be limited.

The Multiple Sclerosis Foundation Cooling Program opens each year on February 1st and continues through June 1st. Applications, which require income verification and a doctor’s note, can be submitted online or by postal mail. Applications are confidential and must be reviewed by the grant committee. Visit the MSF Cooling Program website or call (888) MSFOCUS (673-6287) for more information.

The Multiple Sclerosis Association of America Cooling Equipment Distribution program provides cooling equipment to both adults and children living with MS. Download the appropriate application from the MSAA website; return application materials and required documentation, including income verification and a doctor’s note, to the MSAA program coordinator by postal mail. For more information, visit the MSAA Cooling Equipment website, call (800) 532-7667, or email clientservices@mymsaa.org.

Read this post in its entirety:

Free Cooling Equipment for People with MS -- Apply Now!

Writing as Advocacy

Becoming an advocate is easier than you might think.  It can be as simple as using your words or actions to demonstrate support for a particular cause, ideology, or group of people.  Advocates often educate and inform, make recommendations, and support, defend, or plead on behalf of others.

At the heart of advocacy is a desire to influence thoughts, behavior, and policy.  Skilled advocates are able to motivate others to take a desired action.  They can also help to dispel myths and fight stigma, both of which are important for the chronic illness community.  To be an advocate, you don’t have to be an expert in public policy or become a motivational speaker.  You just need to be willing to speak out.

The most successful advocates become masters of persuasion.  They use opinion, fact, and convincing arguments to change behavior and mindsets, influence public policy, educate people, and build support for specific ideas.  Writing can be an effective tool for advocacy, but it is important to make sure that your message will grab the reader’s attention.

Who are you writing for?
Identify who you are trying to persuade or inform.  Consider their values, needs, and perspective.  What questions or objections will they have to your call to action?  What is their experience and do they share your perspective and concerns?  Once you know your audience, you can tailor your message accordingly.

If you’re advocating for better understanding of the issues related to living with RA and your target audience includes people living with RA, friends or family members, or healthcare professionals, you may not need to include detailed explanations of the disease.  But members of the general public, government officials, newspapers or magazines may need more background or supportive information to provide context and significance for your appeal.

After you know who you are writing for, it is important to make sure that they read what you have written.  And if they read it, will they understand it? And if they understand it, will they do what you want them to do?

Read this post in its entirety:

Advocacy: The Power of Words to Motivate Action

Carnival of MS Bloggers #118

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

MS in the Movies, Best and Worse Things to Do After Diagnosis

Movie Time!

by Thomas at BiPolar, MS, and as handsome as ever

You know, there are days when you think you're doing real well with these disorders. This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading. Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all. Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour. This set back all other planned activities. Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK. Thought I could get two days in a row. Silly MS boy. Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses. It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior. Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth. So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer. I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie. I know, I know it's all made up. Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS. No one would ever figure on someone who had both, right?

Bipolar disorder: Splendor in the Grass (1961), A Woman Under the Influence (1974), Mr. Jones (1993), Michael Clayton (2007), Observe and Report (2009), The Informant! (2009), Shine (1996), 3 (2012), Homeland (TV) (2012), Lust for Life (1956), Frances (1982), Cobb (1994), Call Me Anna (1990), A Fine Madness (1966), Bulworth (1998) (for the rap scene alone)

Multiple Sclerosis: Hillary and Jackie (1998), Duet for One (1986), The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that. Now these lists are not complete certainly and are from various sources around the web. You can find most if not all at Netflix or Amazon. I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One. This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie). Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her. You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me. The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple." Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple? Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.




Do you think we could ask Martin Sheen if he'd like to be President again? I'd rather have the guy with the MS than what we've got now on either side. Heck, we did pretty well with the guy in wheelchair. Oooops, no politics. Sorry. I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it. Other films? or TV shows?

The Five Worst Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade 

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

Mistake #1: Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now. I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

Mistake #2: Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

Mistake #3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am. I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

Mistake #4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

Mistake #5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE: You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly.

The Five Best Things I Have Done Since Being Diagnosed with MS 

by
Marie Cooper of MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs 

Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published.

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift.

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you.

Best Thing #2: I acknowledge what my body is telling me. 

Me? Listen to my body?!? Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing. And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.

Best Thing # 3: My “overbed” table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me. What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of “Best Things” list? Having MS certainly isn’t the best of anything.

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself.

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)


This concludes the 118th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 19, 2012. 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, July 17, 2012.

Thank you.

Comments for this post.

My Day on Capitol Hill: An MS Activist in Action

Wednesday was the big day! MS activists from around the country visited countless offices on Capitol Hill to voice their support of specific legislative issues needed to improve the lives of people affected by multiple sclerosis. Requests made to lawmakers this year on behalf of people with MS nationwide included:

• Support the Lifespan Respite Care Program: 
• reauthorize the program by passing H.R. 3266 and 
• include $5 million in the FY2013 Labor-HHS-Education appropriations bill for the program.
• Support MS Research: 
• provide $32 billion in FY2013 for National Institutes of Health and
• sign Dear Colleague Letter or make programmatic request for additional appropriations (money) for the MS Research Program (MSRP) under the Congressionally Directed Medical Research Program. Last year the MSRP received $3.8 million.
• Join the Congressional MS Caucus: contact MS Caucus co-chairs Representatives Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3) and Senators Robert Casey (PA) and Orrin Hatch (UT).
• Support MS Awareness Week Resolution: 
• co-sponsor the MS Awareness Week Resolution (H. Res. 560) and
• contact Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) to voice your support.

Todd Adams, Legislative Director to U.S. Representative James R. Langevin (RI-2) and the Society’s 2011 Congressional Staffer of the Year, made the following suggestions in preparation for our visits:

• Regardless of whom you meet in the office, establish a connection. Tell them your story.
• Make it known if you are a constituent.
• Clearly present your “ask.” What do you want the congressman to do or support? Explain what it will mean down the road to you and others. Leave behind materials detailing your request.
• Be mindful of time.
• Exchange information so that the office can contact you.
• FOLLOW UP!! Possible questions to ask: “Did you have an opportunity to look over our priorities? Did you have any questions? Did your boss sign off on our request? Was he OK with it?”
• Most importantly, HAVE FUN!!

My day began as MS activists from Virginia loaded the first bus leaving the hotel. Dropped off in front of the Capitol Building, I went with Dana and Phil, fellow MS activists, to visit the office of James Moran (VA-8), our U.S. Representative. We met with Moran’s Legislative Assistant, Marcia Knutson. Tip: Allow at least one hour to enter the office buildings in the morning. 

Dana and Phil have an ongoing relationship with Ms. Knutson, and Rep. James Moran is generally supportive of healthcare issues, so not much time was spent discussing the requests. Knutson wanted to know the bill numbers and specific dollar amounts being requested, as she wrote in her notebook. From there, the conversation traveled between various topics and I picked up on a few additional details which may be important to keep in mind when contacting your own lawmaker’s office.

• Although email communication is increasingly becoming more common, take the time to visit the office. An in-person visit to educate the Legislative Assistant on an issue, especially one with which he/she is unfamiliar, is highly preferable.
• If you send a blanket form letter to 300+ offices, most of which do not house your personal representative or senator, don’t expect it to be taken as seriously.
• Don’t just ask for “more money” in your request. Be prepared with specific dollar amounts.
• Know your lawmaker’s deadlines for Budget Hearings. Rep. Moran’s deadline for submitting materials in preparation for a March 28th or 29th hearing is March 20. As the legislative assistant must prepare materials in advance of this deadline, groups meeting with Ms. Knutson with budget requests after March 13 will be left out of consideration.
• Unfortunately, if you choose to send a letter to your Senator or Representative, it will face up to a 6-week delay because of the rigorous security screening process in place – email is preferable. And if you don’t hear back from the office after an email, call to be sure they received it – Spam filters in Congress sometimes divert email messages.

Before we left Rep. Moran’s office, I was able to jump into the conversation and express my personal concerns as a self-employed person who has an individual health insurance policy. As a “grandfathered” policy, it does not need to match the same requirements incorporated into new policies being offered by the same company. Ultimately I was asked if I could hold out until 2014 when health exchanges will be established in our area. I’m not positive that my concerns were entirely understood, which means that I need to follow up and continue the conversation. 

After going through this, I realized how easy it really was. A visit to a lawmaker’s office is just the beginning of a longer conversation. What you do afterward will determine how well your voice is heard and your concerns are understood. Each phone call is documented and emails are read. Every contact is important. Now is the time to keep MS-related issues at the frontline of Capitol Hill. 

Help keep the momentum going – follow the federal advocacy efforts on twitter at @MSActivist and after you’ve contacted your elected official or take some other action, tweet about it using hashtag #MSActivist.

Originally published on National MS Society blog.

All the Little Voices

Lee Domenico, Lisa Emrich, Ted Thompson

Day One of the 21st Annual National MS Society Public Policy Conference has come to a close.  Lots of excitement as MS Activists from across the country have landed in DC.

I attended the opening sessions this afternoon and met up with Lee Domenico from Delaware.  Lee shared her story with me earlier and you can read her interview at All the Little Voices Working Together.

As more blog posts go up on the National MS Society's blog, I will let you know.  Tomorrow begins bright and early at 7:30am.  Until then, good night.

Blogging from DC

I'll be blogging from the 21st Annual National MS Society Public Policy Conference in Washington, D.C.  I've been studying the agenda and am really exciting to be learning more about MS Research, the Caregiving and Lifespan Respite Act, and updates in healthcare reform which affect MS patients.

Read more at:

Demystifying Public Policy: MS Activists on the Frontline


In case you were thinking to yourself - Doesn't Lisa live near DC?
Yes, I do. However in the 13+ years I've lived here, I have not once visited my Representative's DC office downtown.  This will be a new experience.  Very excited!

Multiple Sclerosis Advocacy on Capitol Hill

What does Advocacy and Activism mean to you?

MS Activists on the Frontline

In looking at the agenda of the 21st Annual National MS Society Public Policy Conference in Washington, D.C., the fiscal budget is one area in which MS Activist will take their voices to Capitol Hill to advocate, or lobby, for continued funding or increased funding for MS research.  Activists will also urge lawmakers to reauthorize programs which aim to assist MS patients and their families, such as the Lifespan Respite Care Act.

I am looking forward to learning more about the recent victories the National MS Society, together with other patient advocacy organizations, have won in recent years.  I am also eager to gain a better understanding of the lobbying process as I aim to demystify public policy. 

While I’m at the conference, is there anything specific that you would like to read about? 

One thing which is on my agenda is to bring you the information you need to become an MS advocate/activist from your own home.  Letters, emails, and phone calls to legislators really do make a difference.

Read this post in its entirety:

MS Advocacy and Public Policy on Capitol Hill

Carnival of MS Bloggers #75

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

Courage to Speak Up, Speak Out, and Share

Trapped in a Toilet

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.

Finding your Voice…

from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done!

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything!

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne

Part Two Taboo

from Kaleidoscope Muff

Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

Warriors

from Judy of Peace Be With You

I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.

This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 2010. 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, November 16, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #66

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

Motivation, Exercise, and Advocacy

Maybe it's Just One of Those Days
by Webster

I am feeling rather depressed today. My PT, Shannon, pointed out some truths to me about my "lack of compliance" with my exercise routine. She sees right through me. She's good. And she isn't even a specialist with MS! Still, she certainly hit on my buttons, in a very kindly way, as we discussed the ebbs and flows that is MS.

Why am I not doing my home exercises? I don't know. Because I don't believe that they will keep me from getting worse, I guess. In my heart of hearts I feel it is inevitable - getting worse. I have seen it - too much of it - it will happen to me, too. And I guess I feel that there's not anything I can do that will change that. So, I don't bother. I started out with high hopes, and I was getting stronger. . . THEN, I got that damned sinus infection which pretty much put me back where I was. I guess I'm feeling, "What's the point?"

Of course, I know that  if I continue the way I have been - not doing much of anything - I WILL get worse. So then, if I do the work, and don't get better, perhaps I'll just stay the same. Like treading water: sometimes it takes a lot of effort just to stay afloat.

So, I've been feeling a little blue today, just shy of crying. Thinking about what I have to do to change my thinking. Oh- and I have been taking Ampyra for five days now, and have not noticed a difference. There's that, too.

And then I read this, which leads to thoughts of the BP oil washing up on the once pristine beaches of Florida, and Louisiana, and these thoughts do nothing to make me feel better about my situation, at all, but just seems to be a swirl of negativity circling the drain.

I didn't get enough sleep last night; I woke up  feeling like crap. But I went to PT and I walked in water for 25 minutes, and the treadmill somehow pushed the speed up a notch to a six, when Shannon set it at a five, so it was no wonder I was feeling the difference.

Anyway, we made a plan. Do one thing: the Roll for Control. Every day. It takes, what?, five minutes? Then throughout the day do little things like standing balance exercises, or pulls with the TheraBand, or seated marching during commercials. But those things are all extra. The Roll for Control is what I must do  every day, without fail.

I'm going to go to bed. Tomorrow has to be a better day.

Good Night, TTYL, and Be Well,
Webster

New MS Device to Rehab My Swollen Feet
by Diane Standiford

Always trying something new---this cheap, plastic device (that probably made someone millions) lets your feet simulate walking, while you are seated. It will keep the blood circulating, lightweight, sounds super! I don't have the foot strength or calf strength to move the left one. I had hoped it would have a teeter-totter effect...but, no.

And off I head in search of the next affordable device to help my MS.

Awesome advocacy experiences
by Dan Digmann

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of Jennifer & me getting political at the Capitol

Jennifer & Rochel after our chance meeting with Rep. Caul

We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.

But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .

Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”

Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”

The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled. “I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.

“Of course I remember you,” he said with a smile.

Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.

Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.

He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.

We came home feeling so empowered and excited about the work we had done that day.

A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy

But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.

We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program

Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.

To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

This concludes the 66th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 15, 2010. 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, July 13, 2010.

Thank you.

Comments for this post.

FDA, Social Media, and Pharma Ads

I’m looking for your thoughts and opinions on a matter which may directly impact us as patients and the manner in which we get information. This Thursday and Friday (November 12-13, 2009), the Food and Drug Administration (FDA) is holding a public hearing “on how pharmaceutical companies use the web and social-media tools to market their products - the first step to providing guidelines around this type of marketing. Sixty-two speakers from pharmaceutical companies, media companies, agencies, and others have been asked to give their viewpoints.”

I’ve been following the lead-up to this event fairly closely as the CEO of HealthCentral, Chris Schroeder, will be speaking during two sessions. HealthCentral is even hosting cocktails after the first day of hearings. (invitation seen here) Have I ever mentioned that I live only about 4 miles from HealthCentral's Arlington, VA, offices? I do, although I've still not been over there to check things out in person.

Read this post in its entirety and please comment:
FDA, Social Media, and Pharmaceutical Advertising

I Have a Voice and I'm Learning How to Use It

How often do you feel as though nobody really listens to what you have to say?

When was the last time you thought to yourself, "if only the people in charge had talked to me" ?

Or "that sounds fine and dandy" BUT............

**********

Well recently I had an opportunity to share my voice with some pharmaceutical executives. After reading a few posts from right here on this very blog which discussed a drug, yet-to-be FDA approved, for use in multiple sclerosis, the Vice President of Corporate Communications at Acorda Therapeutics, Inc., Tierney Saccavino, emailed me.

"I have checked out your blog periodically, and I have found it to be articulate, well-written and thoughtful. I’ve been impressed with the detailed research that has gone into your posts."

This wasn't the first time someone from Acorda had contacted me. In May Jeff Macdonald from the communications office emerged from lurking long enough to inform me that Acorda would soon be announcing results from the second Phase III drug trial testing Fampridine-SR in treatment of multiple sclerosis.

"I saw your post from last week [ed. May 14] about getting “pitched” by a PR person, so completely understand that you might be wary of another call. That said, I’d really like to talk to you about what we’re doing, what you’re doing and get your thoughts about how I can work with MS bloggers while being respectful—I completely understand that a lot of folks will not be interested in communicating directly with someone from the pharmaceutical industry."

In my email response, I asked lots of questions including some related to Acorda's motives in contacting me. The email reply I received seemed too short and dodged my pointed questions. [Note to self - When reading email responses, scroll down through the part of the sender's email which includes your original message. You might find that the responder has added answers to your questions WITHIN THAT space.] I didn't discover that Jeff had provided answers to my questions until roughly a month later as I was cleaning up my inbox.

But before simply posting information regarding results from a Phase III drug trial, I wanted to know what exactly we were talking about. I researched the drug Fampridine-SR (a patented sustained-release formulation of 4-Aminopyridine). I researched the research on said drug in its use in spinal cord injury and multiple sclerosis. I also researched Acorda and its Founder/CEO/President Ron Cohen. I wanted to make sure that any information I presented was accurate.

"We've been very impressed with the thoroughness and with the detail on your blog," said Dr. Ron Cohen, CEO of Acorda.

This was said at the beginning of a two and a half hour phone conversation which took place July 17, 2008. I found myself listening to Cohen's firsthand account of how he chose medicine, then how he came to be in the biotech field. You can find much of this story in The Bioentrepreneur and Fampridine. Something I did learn was that his father was a physician and his mother was a classical violinist. What Cohen learned is that published material which might have thought to be long-forgotten can be found in this age of vast digital repositories of information and clever researchers (me).

With that said, I felt fairly confident that my research was accurate and that I had a reasonable grasp of the information regarding Fampridine-SR which I've shared in previous posts. However there were questions not answered by simply reading the literature and press releases. I had an opportunity to ask some of those questions and the execs had an opportunity to listen to my opinions, perceptions, and learn from my experiences as a patient with multiple sclerosis.

Please note that this post is in no way an endorsement for Fampridine-SR nor for Acorda. It is an extension of the information previously shared regarding these topics and questions which a few readers had posed in addition to my own.

**********

In MS there are three types of pharmaceutical treatment commonly in use: disease-modifying, exacerbation rescue, and symptomatic. Fampridine-SR does not change the course of the disease nor does it diminish the length or intensity of relapses in multiple sclerosis. Thus Fampridine-SR is a symptomatic treatment which helps to improve nerve conduction in demyelinated areas of the central nervous system in some patients. (Yes, I'm using qualifiers cause, well honestly, nothing works for everybody in the same way.) It does so by plugging some of the holes through which potassium ions escape in damaged nerve fibers. It does not remyelinate, it temporarily plugs the holes at the individual nerve fiber level to allow more electric current to flow through the damaged areas as long as the nerve itself is not dead.

When asked about possible drug interactions, Cohen responded that they have not found indication of drug interactions. "90% of the molecule is not metabolized and thus excreted. It is not competing with the same enzyme [of other drugs] nor inducing the same enzyme."

What about trial participants/patients with cardiac issues? "With 1500 people in all trials dating back to the '90s [ed. pre-Acorda involvement], there has been no indication of a relationship of fampridine with any cardiac events." The FDA requires that clinical trial drugs undergo a thorough QT study. Acorda completed a 200-patient QT study in 2007 which showed that Fampridine-SR doesn't affect heart rhythm.

Have you found that fampridine causes potassium levels to fluctuate? "There is no association with potassium levels. No mechanistic or theoretical reason to as it is not changing potassium in the blood. It is blocking the molecular potassium channel, one out of hundreds, and has nothing to do with potassium in the body."

Did you eliminate any trial participants due to an increased risk of seizure? For the inclusion/exclusion criteria, patients with a history of seizure were excluded as were those with EEGs which showed epileptic foci. No MRIs were conducted to determine if a patient had substantial cortical-subcortical lesion load which might have a seizure focus. When asked if seizure risk would be a contraindication, Cohen stated that they will discuss that with the FDA.

When asked about long-term side effects, Cohen provided lots of statistics regarding number of participants in the various trials and number of people who have continued on long-term safety studies, currently at 500 people. Common side effects have included dizziness, insomnia, tingling, nausea, light-headed. The most common side effects in the recent trial were urinary tract infection and falls. Acorda is currently analyzing data from all trials to develop an integrated summary of safety which apparently is a rather involved process.

**********

Why the 25-ft timed walk? Why not a 500-meter walk? Or how about measuring walking steadiness not speed? I believe that MS patients could undergo a timed walk five times in a row and get five different results. Such is the variability of multiple sclerosis. This is a major problem I had with the trial description and one of the first questions I asked Jeff Macdonald back in May.

Cohen shared that the biggest challenge in designing the trials came from trying to show exactly how patients were benefiting from the drug and then determine how to prove it. In order to identify the specific benefits, Andrew Blight, now Acorda's Chief Scientific Officer, traveled to ms centers around the country and interviewed patients, patients' families, doctors, and nurses to help formulate the hypotheses related to the drug. What Dr. Blight was told was that patients using 4-AP experienced improvements with stamina, fatigue, visual, bowels, and strength. The most frequent benefits related to walking, strength, and stamina.

Again why the 25-ft timed walk? "In the literature there is research regarding the use of the 500-meter walk, the 6 minute walk, and the 25-ft walk. Centers had tested these methods and found there was an extremely high correlation between the 25-ft walk and the long walks." So the 25-ft timed walk has become the "gold standard."

What about the variability in walking in MS patients? For me, I can start out a little stiff going at a moderate speed. Then I hit the wall so to speak and things slow down to molasses with 50-pound weights attached to each leg. But if I stop and rest until I can feel my legs again, I can walk again often more easily than I began. Cohen replied, that in the placebo group in walks that were measured over 21 weeks, they found that the natural variability was up to 70%!

"The issue is not the amount of change, consistency is the real issue. MS is characterized by inconsistency. If you have a treatment that is really doing something, it ought to show that it is doing something consistently over time." said Cohen.

So Acorda devised an algorithm to show consistency which they plan to publish separately because they feel it is an important method to use in measuring consistency over time.

Note: I may come back and insert a description of the methodology. But for now I'll move on.

What does the 25% improvement in walking speed mean for me in my life? Cohen responded that the FDA recommended another test to show that the improvement was meaningful to the patient. In the UK at Kings College, they have developed the MSWS12 which is a 12-Item MS Walking Scale questionnaire related to daily life activities that rely on ambulation. When comparing this questionnaire with a battery of other tests, the MSWS12 correlated highly with other clinically relevant instruments. The FDA required Acorda to show that the timed walk benefit for responders correlated with the MSWS12 scores which they said it has.

One other test they used was the LEMMT which is the Lower Extremity Manual Muscle Test. MSers you know the one where your doctor asks you to resist their pushing on your legs in various directions. Cohen said that with improved scores on the LEMMT it showed that the drug is working the way it was thought to work. He added, "Overall, many people who take the drug are demonstrably better, even spasticity was improved even though we didn’t recruit people based on spasticity."

**********

Earlier in the teleconference, I had asked about the company's decision to focus on multiple sclerosis rather than continue to place focus in spinal cord injury?

"MS is an overlapping condition with SCI. They both address the need to restore neurological function." and that focusing on MS fits "squarely with the mission statement."

How much did the booming market for MS drugs in the past 10 years affect their decision to move forward in phase III trials for MS? "We’re targeting orphans. If you have something that really makes a difference, it will find a market and provide a good return on investment. In the 1990s, other drugs came out, so we didn’t have to fight a battle to get investors interested."

Cohen also explained that when he first decided to focus on SCI that he was advised against it. He was told that the "market is too small." Although he didn't say it directly, it was implied that the larger MS market certainly did affect their choices. High risk, high reward.

**********

Finally the most important issue to me: Cost?

I started taking Baclofen for spasticity which works well, helps my walking ability, and is cheap. Why would a patient want to switch?

"You may not want to and that's fine. It is important to distinguish the drugs. Baclofen is for symptomatic effects. It's a mixed bag. Fampridine-SR is a drug that improves conduction."

In the trials, 60% of the participants were taking immuno-modulators. The vast majority had to be walking disabled which EDSS score of 5.5-6.0. Others had EDSS score as low as 2.5 and we found that they could benefit from drug regardless of baseline walk.

When asked about Patient Assistance Programs, Cohen said they are interested in establishing a PAP and will be working closely with NORD (National Organization for Rare Disorders). They are looking to model it after their program for Zanaflex which provides coupons to help patients with drug copay.

Here is where my voice was heard!!!

I shared my experience with various assistance programs and explained how my insurance works (or better yet doesn't work well). I described how my income was too high for help with Copaxone in 2006 and how my income had to reach below 200% FPL to fully qualify. I described how I am disqualified for help with Provigil because I have insurance although it may be exhausted.

They asked me questions related to the types of insurance I thought that most MSers have. What were some of the issues related to paying for medications. What percent of MS patients you know have coverage? How do typical MS patients get their insurance? Etc. I answered as best I could. Group vs. Individual Policies. Moving to Part-time Work. Losing access to Group Insurance. and more....

"These are excellent education points for us."

"Our goal is make the drug as accessible as possible and must balance that against other imperatives. Shareholders comprise …. If people don’t have access to the product, we’re not fulfilling our mission. Our commercial team is working on this."

"Wider issue with our health insurance system, especially for those who take expensive drugs for chronic disease."

"It is frustrating to the company as well. And how to fairly compensate investors and shareholders for taking the risk."

"Love to hear more from you as part of a constituency panel of patients, insurance, doctors, etc."

So how about that? Not only has my voice been heard online, it may be heard in person as well. If that helps to make sure that all patients have access to the drug without great out-of-pocket expense, then I will have made a difference for others.

I've often thought that I've gone through such financial struggles and disappointments for a reason. Maybe that is the force which is driving me. I sincerely don't want other patients to have the same experiences I've had. We don't need that stress and certainly don't need the insecure financial future which comes with it.

Before ending the two and a half hour conversation, I asked a bold question.

What have you done with the proceeds from selling your stocks which has totaled $6.7M since October 2006? Cohen replied that some went to gov’t and other paid for options, pay off mortgage held in cash, renovation, education accounts for the girls, 8 and 6, and diversified.

I shared that I dream of owning a house someday.

At the end of the teleconference, Cohen invited me to come up to the company and share my thoughts with his team, perhaps as part of that constituency panel.

What do you think dear readers - Should I share more of my thoughts with a pharma company who actually wants to listen and who was apparently shaken up with my personal take on some of their pre-launch activities?

As always, please leave your thoughts below in the comments. I look forward to hearing what you have to say.

Knock knock. Who's there?

Pharma. Pharma who?
Pharma's a-callin' and wants a word with you.


OK, so it's not the best knock-knock joke. My nephews can come up with much better. But it's not a joke.

Tomorrow morning I will be calling, directly mind you, the CEO of a pharmaceutical company of which I spoke recently. I've created some questions and collected a few from readers like you.

If after reading up on the previous posts regarding Fampridine-SR you have a question or two, please leave them in the comments section.

Thanks.

Just a quick note. I will share my thoughts regarding the 2 1/2 hour phone conference soon. Just need time to collect my thoughts, while I'm also working on new segments of my own story.

Federal Money for Multiple Sclerosis Research

Ask Your U.S. Representative to Support $15 Million for MS Research (h/t MS Activist Blog)

New federal money is now available to multiple sclerosis researchers, thanks to your MS activism. We can build on that momentum in Congress and secure new avenues for more MS research funding. Ask your U.S. Representative to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research.

Take action today:

• Send a quick email to your Representative.


• Call your Representative's Washington, DC, or district office to talk about this issue. Call 1-800-828-0498.


• Make an appointment to visit with your Representative or their staff in the district.


• Attend a community or town hall meeting. Call the district office for a schedule.

For your Representative's contact information, visit http://www.house.gov/.

You can use these talking points and background when you speak with your Representative:

• A Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan and Michael Burgess. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs.


• Please have Representative ____ sign on the letter by contacting Congressmen Carnahan or Burgess. As a constituent and an MS activist, I encourage your support of this investment in MS research.


• [Share how MS has impacted you personally]


• Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk.


• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.


• More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."


• MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.

Now is the time to pursue a specific appropriation for MS research in the CDMRP for fiscal year 2009. The deadline to sign on to the Dear Colleage letter is March 14. This program is funded annually through Department of Defense (DoD) appropriations bill. Last year your efforts influenced Congress to include MS as one of the areas eligible to compete for research funds through the DoD research programs in the FY 08. This is the first time that MS has ever been listed.

The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants.

Join the movement with National MS Society Advocacy