By Sister Karen Zielinski, OSF
Was I imagining eyes on me as I crossed the room? No. They were watching me.
It seemed like hours to walk across the dining room to the cafeteria line the first time I used my cane. I was embarrassed and self-conscious. I was not yet 40 years old; it was the 16th year of my MS diagnosis. My physical therapist suggested I use a cane to get around since my balance was off and my legs were weak. She told me a cane would give me more support and stability,and keep me from falling and breaking a bone. It would also signal others to be careful around me, to give me a little more space. It made good sense—but it made me feel like a nerd.
People had known for years that I had MS; now messages filtered back to me via friends that “Karen’s MS is really bad. She is walking with a cane now!” There are many invisible MS symptoms, but using a cane is a dead giveaway of weakness in my body and the progression of the disease.
In a world where physical appearance and independence are so highly valued, walking with a cane through a public place was not easy. I was proud. The cane showed my physical weakness. I felt like I was the entertainment of the day.
After a few weeks, I just accepted it as part of the many losses of living with MS. If someone stared at me, I stared back at them and asked “What?!” I told them I used a cane for safety.
The irony was that as much I tried to fight the emotional stigma of using a cane, I came to appreciate how much better I walked with one. Eventually, I realized the cane was part of accepting reality—acknowledging that I had a chronic disease and needed a walking aid.
I swallowed my pride in two ways: I reminded myself that I could still walk, although in a limited way, and I remembered that nobody’s perfect.
Karen Zielinski is a Franciscan nun and director of the Canticle Studio for the Sisters of St. Francis of Sylvania, Ohio. She is a freelance writer and former Board chair of the Northwestern Ohio Chapter.
There’s more to this!
Go to Walking (Gait), Balance & Coordination Problems at www.nationalMSsociety.org/walking_gait_problems for an overview of resources and a list of articles, brochures and videos exploring what can be done for walking problems. Or call us for help! 1-800-344-4867.
In order to qualify for SSDI (Social Security Disability Insurance) benefits, a person needs to have paid sufficient FICA taxes, thereby earning “work credits,” in addition to having a disability that makes holding a regular job impossible. Visit www.ssa.gov/pubs/10029.html for an overview of eligibility requirements and work credits, which are earned each quarter of a year an individual is employed.
The SSA (Social Security Administration) recognizes MS-related difficulty with motor skills, concentration, memory, fatigue, vision or side effects of medications as among the criteria for receiving benefits.
The SSA will require the following:
- The names and contact information of doctors, caseworkers, hospitals and clinics involved, the dates of visits and copies of any medical records.
- The names and dosages of all prescription medicines.
- Laboratory and test results.
- Work records from your employer. Letters from colleagues or supervisors that support the claim.
Start the process
Ask your neurologist (and occupational therapist, if relevant) to evaluate your ability to continue working. “Make sure you have your doctor’s help and encouragement from the beginning,” said Kris Erickson, MSCIR, MSSMC, health insurance manager of the National MS Society. “Without that, your claim may be turned down and you’ll have to appeal.”
“We also recommend that you journal your symptoms,” Erickson added. “A description of what is happening on a day-to-day basis can make a big difference, especially if you have invisible MS symptoms. Saying ‘extremely tired,’ for example, is less useful than saying ‘MS fatigue, four 45-minute naps a day that interfere with bathing, eating, cleaning the house.’”
You can apply online at www.socialsecurity.gov/applyfordisability. Or call 800-772-1213 to schedule an in-person or phone appointment. Keep copies of all the information you give to or receive from the SSA, as well as the contact information for your SSA interviewer. Be patient, persistent and punctual. “And don’t be afraid to ask for help,” Erickson said. An MS Navigator® can provide you with materials to help with the initial application; call 1-800-344-4867. In the event of a rejection, the Navigator will connect you with the appropriate professionals to assist in organizing an appeal. For more information, visit www.nationalMSsociety.org/SSDI or www.socialsecurity.gov/disability.
By Ron Hagelganz
My wife, Lisa, likes to lift heavy objects. Not everyone’s cup of tea, but powerlifting is what she loves to do. In fact, in 2001, she set a world record in the World Association of Benchers and Deadlifters, the WABDL, in both bench press and deadlift.
Then came a car accident, brain surgery, and in 2006 a diagnosis of MS.
She now uses a walker to get around, but Lisa never gave up her dream of lifting again. Last year she asked her neurologist if lifting could do her any harm. He gave her the go-ahead, and we got a day pass to the local YMCA. I got her on a bench, loaded up some plates and she did it!
Next, I found a nice used bench with weights and brought it home so Lisa could start training again. Because of the MS, deadlifting is out, but bench press is OK, as long as she’s having a good day. She was excited that she could do it, even with her restricted walking, and very happy to be doing something she could be good at again.
Then Lisa found that the WABDL has a disabled division. That meant she could actually compete! So in March 2010, at age 55, nine years to the month after her last competition, my nervous, prayerful and very thankful wife competed in the WABDL Goodson Honda National Championships in Portland, Ore.
She set a new state record in bench press with her very first lift, and continued to reset the record in her next three lifts, finishing with 132.2 pounds. The next-best state record in the disabled division is 82.5 pounds, so she’s doing really well. And you know, I think she’s just getting started! In fact, it wouldn’t surprise me to one day see her beat her pre-MS record. I know she’s prouder of just being able to lift than of any of her old records. Not bad for an ol’ gal with MS, huh?
Lisa’s record-setting lift of 132.2 pounds.
Lisa & Ron Hagelganz live in Vancouver, WA