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This website was born out of the love shared between a sister and a brother. In August of 2002, my older brother, Wesley Smith, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s Disease. When someone I love is struck by such a tragedy, offering help is my automatic response. But what could I do to help my brother, whose life is being cut so dramatically short? How could I possibly help ease the pain of his wife and his children? These were questions that prompted me (and a small circle of friends) to do something to help Wes & Sharlene, and their three children. To that end, Faithfully Forward was born and this website developed in order to promote awareness of ALS (Lou Gehrig's Disease), to offer support for Wes and his family, and to encourage those searching for a cure through the efforts of family and friends. Like most of us, Wes and Sharlene didn’t know a lot about ALS until they were confronted with it. A referral by their family doctor to visit a neurologist at the Michigan Institute For Neurological Disorders (M.I.N.D.), connected them with the information they needed. Learning about this disease is both helpful and scary, so the immediate and ongoing emotional support made the critical difference. Every conversation, every support group meeting confirmed they were not alone. The Muscular Dystrophy Association and the ALS of Michigan Chapter was there to meet their needs – including medical equipment, help with treatment choices and practical assistance for living each day. Sharlene Smith, a homeschooling mom, knows now that about which she hadn’t a clue in August, 2002. She knows how it feels to watch the love of her life become a prisoner in his own body. She knows all too well the powerlessness of being unable to protect her children from agonizing loss. She has lived through the long and difficult process of trying to get a diagnosis, of seeking answers to unanswerable questions, of looking for help from myriad help systems. Many of those systems are able to provide assistance only to those with the street-smarts and stamina to outlast advocates who are trained to act more as adversaries. Sharlene has fought the battle to take care of herself and their children, while trying to meet the enormous caregiving needs of a husband with ALS. At the time of his diagnosis Wes was young, seemingly healthy, physically active and a hard worker; small wonder that the family felt blindsided by ALS. It’s so easy to think that these things happen to other people, not us. They soon found out that ALS is an equal opportunity disease with no boundaries, and strikes “the most precious people.” Today, more than three years after his initial ALS diagnosis, Wes is clinging to his life by a thread,. As the end of Wes’s life approaches, his increasingly heavy care is beginning to take its toll on his wife – a challenge faced in most ALS families. ALS of Michigan and the ALS Clinic at Detroit’s Henry Ford Hospital have helped my brother and sister-in-law come to grips with their ever-changing world. They introduced them to Cranbrook Hospice, who have lightened Sharlene’s considerable burden by providing a Home Health Aid three days a week to take care of Wes’s shaving and bathing needs. A visit from a nurse one or two days a week to monitor Wes's vitals, as well as to manage his medications and symptoms, also helps to provide peace of mind between clinic visits, which occur every three or four months. Meanwhile, in spite of not having worked since mid-May of 2003, bills must be paid, groceries are needed, medical equipment, prescriptions, vehicle modifications and adaptive home modifications are required. That’s what motivated me to take rather aggressive action on behalf of my brother and his family. Thank you for visiting our Faithfully Forward website. I hope, that as you navigate through its pages, you are moved to think of how you might actively participate in our efforts.
Therese Boldt
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