World MS Day

Today is World MS Day and this year’s theme is #BringingUsCloser. The #bringinguscloser campaign is about bringing us closer to a cure for MS by connecting the MS “world”: people affected by MS, those involved in MS research and clinical trials, and the individuals and institutions that raise money for research. It's a chance to come together to celebrate what we've achieved in MS research so far, and share our hopes for the future.

Life with MS is hard and everyone’s needs are different. Barriers for people with MS are all around us. Access to employment opportunities, or even communication barriers that impact relationships, are just a few examples of the many challenges beyond the physical symptoms of the disease.

These are the subtle realities that need to be communicated. Educating the public, advocating and informing lawmakers and building awareness is one way to promote better understanding. Have you ever wished that people better understood what you were dealing with, or how you are feeling? World MS Day is an opportunity to talk about these issues and be heard. By sharing our experiences we can help to shape services in the future.

MS is More Complicated Than You Think from MultipleSclerosis.net

MS and Your Future

It’s funny how your life is made up of distinct periods of time that encapsulate defining moments.

For me, the most pivotal moment came in 2011 when I was diagnosed with MS, splitting my life into pre-diagnosis and post-diagnosis periods. But there are defining moments after diagnosis as well. There is pre-wheelchair and post-wheelchair, of course. A year ago, I was in the hospital, so there’s that as well.

There’s no way to predict how your condition will change throughout your life. MS comes with a lot of uncertainty.

Everyone with multiple sclerosis is a little different, so your plan has to be very personalized. You need to hope for the best and prepare for the worst.

You need to get smart about MS. The best way to start planning for your future is to become your own advocate. Find out everything you can about multiple sclerosis and its treatments from reputable sources. Learn how MS can behave and stay informed so that when symptoms begin, you will know your options.

I didn’t know I would end up needing a wheelchair but when my husband and I were searching for a home we definitely kept that in mind. An accessible building without obstacles was a must.

It’s also important to understand all your health coverage benefits. When I needed to be admitted to the hospital last year, I took advantage of FMLA so I didn’t lose my job.

Finally, you need to develop a financial plan. As a chronic condition like MS progresses, it could have an effect on your employment and earning power. You need to be ready to control MS not just physically and emotionally, but financially - work with a certified financial planner to prepare for your future. And contribute to a retirement plan while you can.

It’s important to take control of what you can and prepare yourself and others for what may come. An uncertain future does not need to be an uneasy one.

MS and your bladder

A year ago, I had a suprapubic catheter inserted into my bladder. It has changed my life.

Like me, many with MS have bladder problems. In one estimate provided by the National Multiple Sclerosis Society, bladder problems affect at least 80 percent of those with MS. Typically in MS, bladder dysfunction occurs when nerve fibers are damaged, blocking or delaying nerve signals that control the bladder and the muscles surrounding it. Because of this, people with MS may have overactive bladder, underactive bladder, or both.

Bladder dysfunction can be embarrassing and can interfere with social outings and relationships. It can be isolating – making sufferers afraid to leave the house for fear of accidents or constantly needing to be near a restroom.

This was true for me. With my limited mobility, it came to a point that I couldn’t transfer to the toilet on my own. I had lost my independence. I tried medications but they didn’t help me enough. I needed a change.

A suprapubic catheter is a hollow flexible tube that drains urine from the bladder. It is inserted into the bladder through a cut a few inches below the navel. This is done as an outpatient procedure.

I have a tube running down the outside of my leg to a drainage bag hooked to my wheelchair. Because I don’t have to worry about finding a bathroom (let alone an accessible one!), I have less anxiety. I can go out again. Part of me is back.

Everyday Health: Coping with Bladder Dysfunction

March is MS Awareness Month

Let’s educate people, explain to them what MS is, and how it impacts our lives.

I live with the effects MS has on my body every day. I wake up and need a mechanical lift to get out of bed. I spend all of my time in a wheelchair. I spend an hour every day on physical therapy and exercises. I experience pain, spasms, fatigue, and weakness. I take medications to manage these symptoms. I have secondary progressive MS which means I am progressing with little hope of regaining any function I have lost.

Living with MS is hard. In addition to dealing with my physical symptoms, I have come to realize the world isn’t built for someone in a wheelchair. A step or curb, a high counter, a heavy door – I encounter discrimination in favor of able-bodied people all the time.

MS has a big impact on my life. There’s a common saying, “I have MS, MS does not have me.” It’s supposed to be an empowering message. Unfortunately, MS does have me a lot of the time. My disability is fairly advanced so almost every aspect of my life is affected by it. MS certainly gets in my way. One of the most challenging things about adjusting to MS is it’s ever-changing. You have to be a chameleon and learn to adapt with every turn.

MS is a disease of the central nervous system that damages the protective covering surrounding the nerves called myelin. There is currently no cure for MS, which affects around 2.5 million people globally and 400,000 people in the U.S. While treatments are constantly evolving, more research into the disease, future treatments, and a possible cure is still needed.

Let’s get the word out.

7 Things You Don't Know About Multiple Sclerosis

7 MS Facts You Should Know

Watch: MSAA Video: Changing Lives Monday to Sunday

The ADA is Under Attack!

The Americans with Disabilities Act (ADA) became law in 1990. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The ADA Education and Reform Act of 2017 (H.R. 620) introduced by Rep. Ted Poe (R-TX) would seriously weaken the ADA. It would make it easier for businesses to continue to ignore the ADA. It would also make people with disabilities jump through procedural hoops rather than directly asserting their right to ensure compliance with the ADA.  Currently businesses are incentivized to proactively comply with the ADA to avoid the threat of a lawsuit. H.R. 620 would flip this incentive on its head, requiring only that businesses demonstrate “substantial progress” is being made to be in compliance with the ADA.

The United States provides a model for the rest of the world in terms of the inclusivity of our public spaces. H.R. 620 is a direct attack on that model.This bill goes against the very principles of an inclusive America.

Passing the ADA Education and Reform Act would be a step backwards for equality and justice. Contact your Representative today and urge them to vote NO on HR620. All Representatives can be reached through the U.S. Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY).

Read more about H.R. 620 from The American Association of People with Disabilities here.

From the ACLU: H.R. 620- Myths and truths about the ADA Education and Reform Act.

Self-Care

It’s a new year and many people make resolutions or set goals for the year to come. Those of us with MS should consider including a deeper focus on self-care in our resolutions.

Self-care is a term I’ve heard thrown around a lot lately. It means different things to different people. To some, it means self-indulgence - bubble baths and spa days - luxurious items that can make you feel relaxed and pampered. While taking the time to relax and treat yourself is important, for those of us living with a chronic illness or disability, the best self-care can be a bit more mundane.

Hannah Daisy, a mental health occupational therapist and founder of #BoringSelfCare, promotes wellbeing-based self-care through her series of #BoringSelfCare illustrations. For us, self-care isn’t about treating ourselves but instead nurturing ourselves and making choices for our long-term wellness.

Last January, I went from a 40 hour work week to 32 hours. I am lucky enough to have 3-day weekends. Fridays are mine – I write, read, watch television, get a manicure, or just nap. These days are about recovery and conserving energy. I used to think I needed to be ‘productive’ all the time. I have realized that that nap may be the best thing for me.

Self-care sometimes means making tough decisions, asking for help. It involves being painfully honest with yourself and your loved ones about what you need.

Some days are hard. Remember, you’re allowed to have days like this. We need to take care of ourselves and put ourselves first once in a while. Especially on the bad days. Forgive your body for disappointing you sometimes. Be gentle and compassionate with yourself.

Loneliness & MS

The arrival of the holiday season can often bring feelings of isolation and loneliness. However, isolation and loneliness can also accompany a diagnosis of MS any time of year.

The funny thing about loneliness is how very little it has to do with actually being alone. Loneliness describes an emotional response to one's circumstances. It is a state of feeling disconnected.

Adding to this is the varied nature of MS. Each person experiences it differently, which makes it difficult for one to completely understand another’s experiences. I think one of the core causes of loneliness is feeling different from everyone else.

I work from home so I am alone a lot. I often enjoy my alone time – I read what I want to read, listen to what I want to listen to, and watch what I want to watch. But I also get lonely. Especially when my MS gets in the way of a normal day or when I am reminded of my “otherness.” My disability separates me from the group. I have to work, if not harder at least differently, to get through the day. My thoughts drift to my disease and disability throughout the day. This reinforces my feelings of “otherness” and thus loneliness.

While it’s helpful to recognize these feelings for what they are, I don’t think it’s helpful to dwell on them. Unfortunately, you have to be proactive and seek out a community whether it is in person or online to lessen your sense of otherness. Finding a community of individuals with shared interests and experiences has been helpful to me.