Twelve years ago my MS symptoms progressed to a point that I was unable to work. Since that time I have been fortunate to qualify for Social Security Disability Insurance (SSDI) but unfortunate in that it doesn’t come close to covering copays, prescriptions, assistive devices and While so much is beyond my control, there are some things that can be. While addressing the most pressing costs first, making my home more accessible and getting the assistive devices I need is completely out of reach.
Living with MS for 33 years, I have grown-up around this unpredictable disease. What I can and can’t do is an ever-evolving list, and I am sad to say that my century-old house (my safe-space for more than 18 years) has made staying active and independent even more challenging. Stairs, halls, doorways, a bathtub – even countertops are hard to navigate around.
After receiving some financial assistance, I was able to make my bathroom accessible, and I learned how much easier my life with MS can be when I don’t have to struggle with every single thing. I can put aside anger and frustration when doing the basic activities that most able-bodied people do without a second thought. Without these hour-by-hour, minute-by-minute obstacles, I would have energy to do so much more with my day.
As I look at the rest of my home, I imagine what it would be like if it was a place I could feel safe and comfortable.
The MS symptoms I cope with everyday have continued to progress and it is evident that I will need a “seated mobility device” in the not-too-distant future. It creates a daunting unaffordable, unobtainable list of things-to-do if I want to maintain any hope of staying active and independent.
I am working with an incredible contractor who specializes in helping people who have physical limitations. He is advising me on what can be done to make my home safe. The most immediate need is an accessible kitchen which includes (but is not limited to) lowering cabinets and countertops, and adding an eating/food prep surface I can actually sit at.
For the rest of my home, I need the things that allow for best movement: handrails for times when I can walk (trying to maintain my mobility as much as possible), widened doorways for when I need to stay in a wheelchair, electrical outlets within reach and lights and fans I can control remotely.
While these changes in my home are the priority to be safe, there is an amazing new assistive technology that helps people who, like me, have days when we can walk and days when we can’t. It’s called a Zeen and I had an opportunity to “test-walk” one at a recent abilities-expo. Science shows that staying upright and active helps stave off serious health complications in the future – so a device like the Zeen combined with physical therapy isn’t just about comfort or getting around, it’s about maintaining my health as long as possible.
I am so fortunate to live in this house in a terrific community – the comfort and safety here is priceless. Making my home equally safe and comfortable is a dream that could be in my reach – with your help.
Family and friends, I’m asking that you help me in raising money for the nonprofit Help Hope Live in my honor, to fund uninsured medical expenses associated with my MS.
I have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share my page on your social media platforms. Ask me how!
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
