Accessibility in the Home
The Home Modification Process:
From Evaluation to Funding
Life is always changing and this is especially true when living with MS. What worked yesterday may seem more challenging today, and sometimes people have to find a new way to do things.
One way to increase safety and maintain independence is to consider home modifications. There may be ways to adjust your home environment to make every day easier. Figuring out what you need can be confusing and it may help to enlist the advice of an expert. Professionals who may help include: physical therapists, occupational therapists, architects, and Certified Aging in Place Specialists.
Some modifications can be quick and low cost, like installing a grab bar or changing the hardware on door handles. Other modifications are large and more expensive, like creating an accessible bathroom or lowering kitchen counters. These projects require bids from contractors, plans, permits, and sometimes additional funding.
If your residence needs to be modified to improve your safety or independence, we can help. Our Home Modification program offers information, resources, and financial assistance for a variety of modifications to adapt your home. At Home with MS: Adapting Your Environment is a free booklet available on our website or in hard copy from the chapter and provides useful information on the subject. In circumstances where financial support from the chapter is insufficient to cover the entire cost of a project, we also help individuals identify additional funding sources to make the adaptation feasible.
At times, we have a waiting list for funding. But, there are also possible sources of funding in your local community through organizations like the Elks, Lions, or houses of worship. Also, your town or state may have grant or loan programs for home modifications. Your local center for independent living has information about how to access these funding programs. If you are interested in learning more, please contact us at 1-800-344-4867.
Love, Marriage, and MS
By Susanna Redmer
I met my husband Tim about four years ago after a friend had dared me to give online dating a try. I talked online with him for a bit, and then decided to meet him in person since we both wanted to get to know each other better. I thought I’d then tell him my usual spiel about multiple sclerosis just so he’d know what he was getting himself into.
“You know I have this thing,” I began. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called MS,” I finished in a hurry. I expected Tim to say something like, “Never mind about you — I want someone to go surfing with me, run marathons, and do adventure biking.” But I never thought in a million years he would smile and say, “Huh, small world. I have MS, too.”
I remember sitting in stunned silence that the same someone I was interested in was also someone who understood what life was like with MS. Tim knew about the injections, the doctor’s appointments, the fatigue and everything else I experienced daily. I didn’t start dating him because he had MS; I dated him because he was everything I had been looking for. He was intelligent, confident, athletic, a record-setting college runner, and kind. After just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning because sickness could strike at any time due to the unpredictability of MS. And soon after we got married, it did.
Within the year, our son, Will, was born. I remember wondering if I could handle the fatigue, the stress of childbirth, and coping with a new little baby who could do nothing for himself. I was scared, but my husband said something to me that I’ll never forget. He said, “You’ll always have me at your side.”
After a few months, I saw that friends who had had children around the same time were starting to bounce back, training for half marathons and triathlons, and going back to work. On my side, I was having an MS relapse, on top of the strain of giving birth and being a new mom.
I felt isolated in my daily struggles. I worried that Will would miss out on things because I couldn’t do them, and I was upset that I had yet another relapse. Through it all, I had my husband at my side, and still do. I also had a team of doctors who cared about me and helped me to recover.
Since my last relapse, there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. And I also came up with the idea of Café MoMS during my recent relapse. It’s a support group where mothers who have MS and who have children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. Most of all, at Café MoMS, mothers find they’re not alone.
Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, The Time the Earth Shook.
Originally published in the Wisconsin Chapter’s Summer 2012 MS Connection Newsletter.
Don’t Go It Alone
If you’re feeling isolated, reach out. Call an MS Navigator at 1-800-344-4867 to find a support group near you, or call MSFriends at 1-866-673-7436 to talk to a peer with MS. You can learn more about MSFriends and other ways to connect with others like you at www.nationalMSsociety.org/connectionprograms.
Moms with MS can join the “Moms with MS” group at www.MSConnection.org and find resources for families at www.nationalMSsociety.org/FamilyMatters.
Is It Harder to Work with MS?
Julie Stachowiak, PHd
Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.
I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.
I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work.
Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.
What They Found:
- People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.
- Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.
- People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”
- Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.
While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.
Working a Balance
What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.
On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success.
Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally posted at blog.nationalMSsociety.org.
Employment Teleconference Archive
MSnewengland.org > Programs & Services > Online Learning & Resources or call to request a CD recording and handouts.
Career Crossroads Self-Guided Program Access the self-study workbook and the companion videos at nationalmssociety.org > Living with MS > Employment > Career Crossroads: Employment and MS, or call to receive the program and DVD in the mail.
Ticket To Work
http://www.ssa.gov/work/overview.html#a0=0 A free program available to people ages 18 through 64 and receive SSDI or SSI benefits because they are disabled.