Living with MS: it’s not an option, it’s a way of life

109
1

Our newest monthly column is Living with MS, by Bill Brayer, president of MS Helping Hands.

By Bill Brayer

No one ever asked for an illness or a disability. One day things are fine and the next day your whole world is turned upside down, “topsy turvy.” So many illnesses, such as Multiple Sclerosis (MS), change virtually everything. Since MS is a debilitating disease with so many symptoms, no known cause or a cure, people with MS are constantly undergoing lifestyle changes in the way they live. MS is a progressive, debilitating disease. It can be genetic and life threatening depending on some of the complications caused by having it. MS does not discriminate; it affects men, women, children, all races and celebrities at all ages. It can often be triggered by having a medical trauma.

Carol and Bill Brayer

My name is William L. “Bill” Brayer . I’m 78 years old and I have had Multiple Sclerosis (MS) for 58 years. My wife, Carol, has been on most of this journey with me and has told me more than once: “You don’t have MS honey, “WE” have MS.”

When I was finally officially diagnosed in 1987, it was after many years of frustration not knowing what my body was going through and the doctors were not sure either. All I knew was that I was going downhill physically, which was affecting me mentally and emotionally. MS has many symptoms and I had about 11 that were also common to other diseases. I was tested for just about everything (but MS) and had three unneeded surgeries, plus two more were recommended that I decided not to have after getting second opinions. I was finally told I had progressive MS and my progression has since been slowed down due to the FDA-non-approved prescription I have been taking since August 1999.

When I was finally diagnosed, I had no idea what MS was (except that I knew I wasn’t one of Jerry’s kids  — Muscular Dystrophy – MD). I did a lot of research on the Internet and still do in order to keep up with the research going on and checking out any new prescriptions I am given for any medical problem I am experiencing.

After retiring – selling my business – I knew I had to keep busy in order to survive, so I got involved as a volunteer. In 1999, I founded MS Helping Hands-MSHH, an all volunteer 501 (c) 3 non-profit corporation licensed and registered in the State of Washington, and shortly after I founded the MSHH Donor Closet, a resource that recycles used and new durable medical equipment (DME) and mobility equipment (ME) for suggested minimum donations.

MSHH has no administrative costs since it is 100-percent all volunteer,  just monthly operational costs. Over 90 percent of the funding for MSHH comes from the suggested minimum donations received for the items recycled from the Donor Closet. The balance of funding comes from grants, individual and business donations, memorials, events and benefits held each year, and from an ongoing donation program where trays with candy suckers are place at various locations.

“When one is sick, two need help” — Well Spouse Foundation

Carol and I have been co-facilitating the Sno-King MS support group for over 20 years. The support group meets nine months a year, skipping January and July and August. Two of the meetings are MS support group and family potluck dinners with live entertainment held in June and December. All the volunteers of MSHH and the Donor Closet are invited to attend.

Needless to say, Carol’s and my life has weathered the many changes that we continue to meet, and we accept each new challenge as a “Way of Life” that we have to adjust to. We like to think that we may have MS, but MS doesn’t have us.

1 COMMENT

LEAVE A REPLY