Sylvia Massie is a client of the Riverside Tappahannock Home Health team.
It’s an understatement to describe my life as “challenging.” I have a genetic disorder called spinal muscular atrophy or SMA. It’s a debilitating neuromuscular disease with symptoms that include severe weakness in the limbs as well as difficulties with breathing and swallowing, which fortunately are not part of my symptoms. I also have osteoporosis. As the result of a fall that caused multiple vertebrae fractures, I spent some time at the Orchard, Riverside’s convalescent and assisted living facility in Warsaw, Virginia.
When I left there, they suggested I could benefit from Riverside’s home care program. I had some help from family and friends, but I thought getting some additional help was a good idea. It turned out to be all that and more.
The physical therapists that came to the house, the nurses and the aides were all very good at what they do and very considerate at the same time. I spend most of the day in my wheel chair, from the time my husband gets me up until bedtime in the evening. So just doing the most basic activities of living can be challenging. The nurse comes once a week to check my vital signs and care for my catheter; the aides help bathe me and wash my hair. They even take time to dry and style my hair which is really above and beyond what I expected.
I’ve been getting home care for about four years now and it’s become an important part of my life. One of the things I asked for was consistency regarding the individuals who would be part of my team. I didn’t want to have to explain the same things over and over to different people. They said they understood my concerns and would do their very best, and they’ve kept that promise. In a world where I can’t control much that’s going on around me, it’s a blessing to be able to rely on people. Over time, I’ve come to know the Riverside staff and trust them as I would my own family.
So far there’s no cure for SMA, but I have begun a treatment for the disease. It involves a new drug that was developed to treat the disease, not just symptoms by slowing down progression and hopefully even stopping any further weakness. We’ll see how it goes. In the meantime, I’m grateful to be getting care at home from people who are so willing to share their skills and their compassion – a group of people dedicated to their profession of helping others.