News, info and tips for living with multiple sclerosis
Lia Coryell says she wanted to die. According to The New York Times, after fighting COVID-19 last winter, Coryell 56, was hit with heart and kidney failure, pneumonia, and shingles. This was in addition to living with progressive multiple sclerosis. “I’ve had to fight this really dark demon that says: ‘Why are you fighting this? Just let go, let go,’” Coryell told the Times‘ Ben Shpigel. “But I’ve never let go…Continue Reading
I wish I could walk a mile in my shoes but, even with a new pair, that’s not going to happen. My MS limits me to about 100 steps while using two canes and a functional electrical stimulation device strapped under my left knee. Because walking is so difficult, the choice of my MS shoe is important. Here’s what I want in my MS shoes I like shoes with a…Continue Reading
I’ve had pee problems for as long as I’ve had multiple sclerosis. Many folks with MS have these issues, including urinary urgency, frequency, or both, bladders that don’t empty completely, or streams that don’t start when you need to go. There are medications to treat these problems. The best known is probably Ditropan (oxybutynin), which has been around for quite a while. I’ve been taking the generic oxybutynin once a…Continue Reading
Can I survive without dessert? Can I live without ice cream, chocolate, and fruit pies, or with only a small amount of beef when I want a burger? The other day, my wife decided to start the ketogenic diet to try to lose some weight. I’m a skinny guy, so I don’t need to do that. But after reading about various MS diets over the years, I’ve been thinking about…Continue Reading
May I vent, please? In the five years that I’ve been writing this blog, I don’t think I’ve ever used it to get something off my chest. But I need to today. It’s about an experience I had at a restaurant the other night. My wife and I went to dinner with our son, daughter-in-law, and two grandkids. It was a pleasant evening, and we decided to eat outdoors in…Continue Reading
Is orelabrutinib one of the next big MS therapies? Biogen is betting at least $125 million that it is. Orelabrutinib is an experimental oral BTK inhibitor (BTKi). BTKi’s are designed to selectively block an enzyme that’s important for the activation of B-cells and microglia. Some of those immune cells drive the abnormal immune responses that characterize MS. Researchers hope the medication will lower inflammation and slow progression of all forms…Continue Reading
“Do you need help?” The question came from a 30-something woman after I’d finished loading some cartons into the back of my SUV. I automatically replied, “No thanks, all done.” But lifting and loading isn’t an easy job for me. My upper body strength is good, but my legs are weak and offer no help to my topside. In addition, I’ve slacked on my exercising, so I’m not as strong…Continue Reading
People with MS who are using cannabis take heed. A research letter published in May in JAMA Network Open reports that calls to poison control centers about people using cannabis products have been increasing over the past several years. Public health officials are concerned. According to the letter, written by various health experts in the U.S., one problem is that a growing number of retail sales involve manufactured cannabis products…Continue Reading
My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS. I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have lived with my MS all of their lives. I’ve only lived with it for about half of mine. As I…Continue Reading
Could a cannabis spray be just what the doctor ordered to treat our MS symptoms? I’m talking about Sativex (nabiximols), which has been developed as a treatment for moderate and severe MS spasticity. Sativex combines THC, the chef intoxicant in marijuana, with CBD, marijuana’s nonpsychoactive component. It’s sprayed under the tongue or inside the cheek several times a day. The treatment has been approved in several countries, including the U.K.…Continue Reading