Appreciating kind gestures as my health needs increase

In the past couple months, I’ve had more medical challenges than usual. My right arm hasn’t been working well, leading to some additional struggles with activities of daily living. In June, what I thought was a bug bite appeared on the knuckle of my right middle finger. It would swell up then burst open every few weeks. My primary care physician decided it was a mole and froze it off a couple weeks ago. I was bitten by a spider back in August. This led to several doctor appointments, a visit to the emergency room, blood work, two ultrasounds to ensure I had blood flow to my left foot and was clear of blood clots, and a round of antibiotics.

Doctor visits and medical tests are a little extra challenging for me. As a blind person, I must depend on others for transportation. I’m grateful that my wife, Wendy, has made herself available to get me to my recent rash of medical appointments.

On Oct. 3, she drove me to what I hope was my last appointment for a while. It was a nerve conduction study that my neurologist ordered to determine if the problems in my right arm are related to my facioscapulohumeral muscular dystrophy (FSHD). When I saw him back in April, he thought the issue was a combination of carpal tunnel syndrome and tennis elbow. The test showed carpal tunnel as well as a pinched nerve in my neck; however, the primary cause is a near-total loss of function of the bicep and tricep, as my FSHD continues to progress.

Once again, I heard those dreaded words from my doctor: “I’m sorry. There’s nothing we can do.” I’ll be starting another round of physical and occupational therapy shortly, though I’m not hopeful that I’ll get much function back. I’m hoping to slow down the progression and, perhaps, learn some new ways to do essential tasks, such as dressing, eating, standing up, and brushing my teeth. I have to admit that I’m discouraged and looking for ways to put a positive spin on my current situation.

Recommended Reading

March 12, 2025 Columns by Robin Stemple

My disease progression feels like barreling down a hill with no brakes

Encouraged by love and kindness

My morning prayer and devotional time are helping me cope with the additional challenges life’s throwing at me right now. I realize many people out there are struggling. I take encouragement from the parts of Scripture I study, and I remember that Jesus said we’d never walk this road alone. He would provide a helper to guide and teach us along the way.

My favorite Scripture verse is Romans 8:28, which says, “All things work for good, for those who love God and are called to his purpose.” Minister and author Max Lucado reminds us that if our situation isn’t good, we’re not at the end. He also teaches that if we feed our fears, our faith will wither, but if we feed our faith, our fears will wither. I’m doing my best to take things one day at a time and continue to feed my faith, not my fears.

I believe my prayers for strength and encouragement have been answered in many ways. I haven’t been cured, but my friends and family continue to support me, even as my needs increase.

I’m deeply encouraged by the kindness of those around me. A while back, a woman who attends my church approached after the service and asked if I minded if she gave me a hug. I told her that it was fine. She’s been hugging me after church every week since then. It’s the perfect end to each service.

A couple weeks ago, I played music for a memorial service. After it ended, a woman stopped by my keyboard to tell me she really appreciated the music I had provided. On a recent Sunday, after a meeting of our church association, another woman mentioned that she had been at the memorial service and thought the music was beautiful.

As I was leaving a nursing facility recently following a musical performance, my neck, shoulders, and arms were in a lot of pain. A staff member followed us outside to say how much the residents enjoyed the music and how they looked forward to singing along with me every month. She said, “We all just love you here, Rob.” Her comment brought tears to my eyes.

A couple Fridays ago, after a wound care appointment with my primary care physician, my 3-year-old grandson, Theo, asked if he could look at “Pappap’s boo-boo.” After taking a look at the spider bites, he reached up, gave me a huge hug, and said, “This will make you feel better, Pappap!” It sure did.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.