Monday, November 28, 2011

MS Walls

Nicole Lemelle

Do you ever feel isolated? I can be at home with my family and still feel lonely. I wonder if it’s because I sometimes feel like only a sliver of the person I “used” to be.

Lately I have spent time away from friends and family. Strangers too, I guess. I don’t work outside the home, so that sums up my social life! I’ve been electively away from life in general. Most people I know don’t understand what it is like living with this disease and I am growing tired of explaining.

I bury myself in my computer. My previous psychiatrist told me that too much time on the Internet, at the expense of time spent with other people, might develop into depression and social isolation. I stopped going to her because I didn’t agree!

Okay, but you have to give me a little slack. Some of this comes with MS territory.  I do honestly have very real limitations. Am I mad? Of course I am.  My emotions are about as predictable as this disease. Ask my husband!

But a friend of mine pointed out to me that maybe I’ve put up some walls of my own.

That was hard to hear, and even harder to tear down. Walls that I didn’t think anyone else knew about. Fortifications I would much rather not deal with. Accommodations I don’t want to make.

It had never dawned on me that this feeling of seclusion could have anything to do with what I may or may not be doing. Partially, because I do get out when I go to my doctor’s appointments and I enjoy going to church, water therapy and the hairdresser.

Okay, not exactly the life of a party girl … I get the point. Life is what you make of it and I can control my level of loneliness.

Maybe I’ll go back to that psychiatrist.

Nicole Lemelle blogs regularly at My New Normals. Read more about her here.

Wednesday, November 23, 2011

How I keep moving


Jennifer Mason

What a privilege and honor it has been to tell my story and to share my joys and struggles with the world through the “We Keep Moving” project. Never did I realize the impact that it would have on my family, friends and numerous others, most of whom I will never meet.

Telling my story encouraged me to keep moving forward. It would have been easy to give up, to allow others to take care of my basic needs and to stay in my wheelchair. After the cameras left, it seemed like walking was next to impossible without the aid of a walker, crutches or at some point a cane. But I wanted desperately to walk hand in hand with my soul mate, Blake. So instead of giving up, I chose instead to get up and learn to walk again, being the person I so desperately wanted to be.  Here’s how it happened:

I awoke one night to use the bathroom and started to get out of the bed.  Thankfully, my movements woke up Blake, or he would have found me once again on the floor. Just as I was about to fall, he grabbed the back of my shirt and asked in the sweetest voice, “and just where do you think you are going?” “To the bathroom” was my rough reply, then I sat back down and cried. Was I ever going to be normal again? Blake came around to my side of the bed, gently took my hand in his, and asked me to dance. He helped me back to my feet and gently glided me across the floor to the bathroom, where he waited patiently outside the door.

We then danced back to bed and he tucked me in - it was the beginning of many wonderful dances in the moonlight. Every night we danced and I would sing in his ear, “Can I have this dance for the rest of my life?” It might not have been the most beautiful thing to watch, but I felt like a princess as he danced me to my throne. That was the first step toward my walking unaided.

My daughter soon left for the Navy and I was determined that if she was going through boot camp, then so was I. Every morning I would write her a letter and walk it to the mailbox. Some of those walks took forever, but I did it, one step at a time.  If she could do it, I was going to endure the pain as well. Many days I needed a long nap after a short walk to the mailbox, but it was worth it. When she graduated, I stood at her graduation and cried tears of joy. We both had made it.

On April 23, 2010, Blake and I took a walk that had seemed impossible before. We packed our bags and headed to our favorite hiking trail in Letchworth State Park. As we hiked the stairs and hit our spot, we turned to each other and said our vows. What a beautiful day to celebrate life and our ability to overcome the impossible. What a beautiful day to “walk down the aisle” and marry my soul mate.

As this Thanksgiving approaches, my thoughts and thanks go to my family and friends foremost. Thanks for never giving up on me and for pushing me through and cheering me on. I will never take for granted the fact that I can walk again, and I will always rejoice in today.
What are you thankful for this holiday season?

Monday, November 21, 2011

Anyone Got the Holiday Blues?

Rosalind Kalb, PhD
Vice President, Professional Resource Center, National MS Society

So, the holidays are approaching fast. There are presents to buy, friends and relatives to see, get-togethers to plan or attend, and meals to prepare or share. No wonder many of us greet this season with a mixture of excitement and panic – it’s easy to feel overwhelmed. And for anyone living with the overpowering fatigue of MS, just the thought of all this activity can be exhausting. 

For some people the pressure to feel jolly, festive, social and grateful can have the opposite effect – leading to a whopping case of the holiday blues. We’ve all had them at one time or another, but MS can sometimes bring on those blues with a vengeance, particularly when MS symptoms make everything a little less fun and a little more challenging. 

The shopping can be a major chore... the office celebrations start too late in the day…having people over is too stressful to even think about... people’s houses aren’t accessible…friends and family don’t really get it – they’re either trying too hard to be helpful and sympathetic (you know – those sad, worried looks that say “Oh, I’m sooo sorry”), or don’t understand the impact of MS at all (“But you look so good!”). All of these challenges can lead to feelings of loss, and a major disconnect between the way things are, the way people think they’re supposed to be at holiday time, and the way they used to be before MS came along.

It’s normal – and healthy – to grieve when things we value in our lives are lost or changed. When MS messes with people’s lives and abilities, requiring them to give up cherished activities or do them differently, they often feel as though MS is “chipping away” at them, changing the person they were into someone new and unfamiliar. 

Grieving over changes and losses is a process that ebbs and flows with the ups and downs of the disease. Like all grief, it can feel very painful at times, but it generally lessens with time. And believe it or not, the grieving process is what allows people to gradually let go of the way things were yesterday and begin to think creatively about how they can make them better today. 
The Role of Healthy Grieving

When getting into the holiday spirit feels like the challenge of a lifetime, it may help to think about what parts of the holiday season are most important to you – and focus your attention and energy on those. Give yourself permission to do things differently and let your family and friends in on your priority list. If buying presents for others is at the top of your list – skip the stores and jump onto the Internet. If having guests over is your passion, make it a potluck or order in the goodies. If using a mobility aid will help you conserve your energy for the fun stuff, grab it! The point is to hold onto whatever it is about the holidays that gives them meaning for you – and let go of the rest.

 Understanding Depression

And now a word about depression – which is very common in MS even without the stress of the holidays. Remember I said that grief is normal and healthy? Well, depression isn’t. Depression doesn’t ebb and flow like grief; it comes and stays like an unbearable blanket of painful emptiness. As much a part of the disease process in MS as it is a reaction to its challenges, depression is a symptom of MS that deserves prompt diagnosis and treatment. 

If you find that your mood has tanked, leaving you feeling sad or irritable most of every day for a few weeks, accompanied by a loss of interest in things that used to engage you, changes in your sleep patterns and/or eating habits, or thoughts about hurting yourself or suicide, let your healthcare provider know about it. Depression is very treatable. Getting a grip on your mood will make life – and the holidays – feel much easier to manage. 
Diagnosing & Treating Depression

So if the holiday blues are grabbing you more than the holiday spirit, don’t hesitate to get the help you need – from family, friends, or a qualified mental health professional. And if you’ve found some good strategies to manage – and enjoy – the holidays, please share them!

Thursday, November 17, 2011


Susan Skoney

Are you tired of having MS? I am. I’m so tired of it I want to scream. Or at least vent, which is why I came up with the idea of venting regularly for the Society. 

Let me tell you about one recent event that almost tipped me over the edge. My 18-year-old son Alex injured his eye at work—landscaping, OMG, with a stick! It was something mothers everywhere dread— the poked-eye situation. So I knew he had to be seen by a doctor right away. Off we went to an emergency care facility with my son holding an ice bag to his face with one hand and pushing me in my wheelchair with the other.

The triage nurse said, “So, what kind of problem has you in a chair?” I replied, “MS.” She started asking me all about me, while ignoring my now-squirming son with the ice bag. I redirected her to him and she showed us into an exam room.

The next nurse comes in, sees me in the wheelchair and wants to take my vitals. I redirect again to the kid with the bad-looking eye and the ice bag lying on the exam table. Finally, the doctor comes in. This time, I was ready. He looked at me. I promptly announced that I was perfectly fine, but my son ...

End result: My son was not blinded, I still have MS and I still really wish I didn’t. A sharp stick in the eye and having MS are both bad. But venting is good!

What’s happened to you recently that makes you tired of having MS? Stay tuned for more vents.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Monday, November 14, 2011

More takeaways from ECTRIMS/ACTRIMS – stopping MS, restoring what’s been lost, and ending MS forever

Chief Research Officer, National MS Society

My journey in the MS Movement began almost 20 years ago with a National MS Society funded fellowship to study myelin at the University of North Carolina in Chapel Hill.  As I’ve reflected on this journey since becoming the Society’s Chief Research Officer, I’ve been struck by how much has changed in MS research over the last two decades – how much has been accomplished to help people continue to move their lives forward. I’ve also become more acutely aware of the need to do more, for more people. MS is a complex disease – and now more than ever, researchers are working together to address those complexities head on.

A compelling and inspiring example of the momentum we’ve gained over the last twenty years is the joint congress of European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS / ACTRIMS). I was thrilled to be in Amsterdam last month with 7,000 researchers who gathered to share their findings, get new ideas, and find new collaborators. It’s the largest conference of its kind worldwide, focused solely on research aimed at stopping MS, restoring lost function, and ending MS forever.

If you followed any of the blogging or media coverage from the meeting, you’ll likely know there were more than 1,100 presentations on research and clinical care. I wish I could say I saw even half of them, but many ran simultaneously, so I relied on a terrific team of staff and volunteers to fill me in. We’ve just posted a summary of the exciting research shared at ECTRIMS / ACTRIMS. If you missed Julie Stachowiak’s insightful research updates from the conference, you can read them HERE. You can also view video interviews of select researchers on our YouTube Channel.

Some of the exciting things aimed at stopping MS include: 
  • First results from 3 late-phase clinical trials of new treatments – they include new oral options, and also therapies that are given infrequently. If they are found to be safe and beneficial, some of these treatments may become available in 2012 and 2013.
  • Progress toward more individualized approaches to treating MS, or “personalized medicine.” The idea is to find imaging technology or biomarkers that might predict a person’s response to a therapy, or predict their disease course, to help with treatment decisions.

In the restoring category:
  • Approaches to rehabilitation and exercise were presented for troubling symptoms like pain, cognitive issues, fatigue and tremor.
  • Many new findings related to CCSVI are intriguing. While we don’t yet know the full story, there is exciting research underway in this area.

What about ending this disease forever?

This is just the tip of the proverbial iceberg. Don’t take my word for it – check it out yourself. Read our summary, and the conference abstracts on the Congress Website to learn more, and check back in to the blog in the coming months as we explore what the latest cutting-edge research means to those living with MS.  

Tuesday, November 8, 2011

Ask an MS Navigator: What are job accommodations and how do I get one?

Kris Graham
Employment Manager, National MS Society

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:
  • You work for an ADA-covered employer; 
  • You are “qualified” to do the job; AND 
  • You are a person with a disability as defined by the ADA.

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations. 

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:
  1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential. 
  2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

  • How is MS affecting your job, potential job, or application process?
  • Why are you requesting accommodations?
  • What accommodations or changes to your work will be effective?
  • What information will you need to provide to your employer (or potential employer)?
  • When should you speak with your employer (or potential employer)?
  • Who should you involve in the conversation?
  • How should you follow-up on your request?
  • What are your rights if things go wrong?

These resources can provide more help and information:

SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.

Got another question related to employment? Comment below and check back in the coming months as we continue to navigate the employment world!