At Home with MS

MS often brings the prospect of major lifestyle changes. It’s important to ensure that the home environment for those of us with disabilities provides the support we need to lead safe and happy lives. Typically, doing so involves making some type of home modification. When modifying your home, the goal is to achieve independence and safety.

When we bought our condo, the first thing we did was have grab bars installed in our bathrooms. We also bought a riser recliner to help me get up out of the chair. As I mentioned in my last post, we’ve made even more changes as my disability progresses. Making changes to your home is part of the game of adapting. Improving access and making modifications not only conserves energy and helps fight fatigue, it provides you with more independence.

Lighting is an important safety consideration. Hallways and stairwells often lack any windows allowing for natural light, so take special care to light them properly. 

The bathroom can be a dangerous place for anyone. Grab bars should be placed throughout the bathroom to provide you extra support. Getting up from the toilet and maintaining your balance in the tub or shower is easier when grab bars are present. This is smart even if your MS isn't severe because balance problems and weakness can unexpectedly occur. The toilet is another area that will require a personal assessment to determine your personal needs. If it’s too low for you to easily transfer to and from, an elevated seat is an easy fix. Some come with arms or guard rails for additional support. Your bathing area is especially important to get right since water will add extra risk. Shower stalls with curtains, roll-in accessibility, and a seat are the safest options even if you don’t use a wheelchair. Eliminating the need to step over a ledge or tub wall also greatly reduces your risk of falling. A roll-in shower is optimal but a shower bench is also a big help.

Many of these home adjustments can be done yourself, but always be sure to consult a professional when it comes to mounting grab bars and other furniture to the wall. Have a two-way dialogue when determining what modifications to make and exactly how they’re made; never get talked into anything you’re not comfortable with. When in doubt, get a second opinion and consult an occupational therapist on your best options. Professionals can be your guide to safety, but it’s important for you to have input on what will make your living arrangements comfortable and accessible.

The ability to live our lives safely, especially in our homes, is very important. Accommodations serve the invaluable purpose of ensuring the human dignity of people with disabilities.

If you rent, you should know your rights.

NMSS Brochure: At Home with MS

Life With Multiple Sclerosis Feels Like 'It's Always Something'

Life with MS feels like 'it's always something.' And for me it is. My MS butts in to my everyday life. While my disease is not life-threatening, it is life-encompassing.

When I got out of the hospital, we made quite a few changes. We had an overhead lift system installed for transfers with a sling because I could no longer bear weight on my legs. Now, when I want to get into bed, I have to have a sling positioned under me and get hooked up to the overhead lift. It swings me into bed which is, granted, a lot easier on me and my husband but is a constant reminder of my progression. We also had a roll in shower installed in our master bath. This is also easier than the old way of pivot transfers to a bath bench. But, as a 39-year-old woman, it still feels like a giant arrow pointing at me saying ‘I am disabled.’

Oddly, I never seem to be disabled in my dreams. But then I wake up and remember. The moment before I open my eyes, I find myself assessing how I feel, wondering what my body has in store for me today.

Being comfortable at all can sometimes be difficult. I am often in some degree of pain and have spasms and other symptoms. The thing with pain is that it varies so much from day to day. ‘Pain’ can really include a number of things - the MS hug (a tight, constricting pain in stomach and/or chest area), Lhermitte's sign (an electric shock type sensation up your spine when you tilt your head down), spasticity, paresthesia (numbness and tingling), and dysesthesia (burning, stabbing, or tearing pain).

On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. I work full time and therefore feel productive which is very important to me.

MS does have a big impact on my life. I often see phrases like "You are not your illness." True, but staying myself and not getting wrapped up in it is the battle.