Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…
Columns
Downbeat, but Upbeat
Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention — all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…
If you’re going to buy a car, do you limit your shopping to just one car dealer? If you need gas, do you drive past three inexpensive service stations because someone told you to fill up at a fourth, where the price is much higher? I don’t think so.
Tune into the World and See
As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…
There are many things that confuse me, particularly in the medical area. Perhaps that’s why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. I’m thinking in particular of botulinum toxin, more…
Making Myself a Priority
Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…
Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…
MS News that Caught My Eye Last Week: Popular DMTs, Data Analysis Predicts MS, Remyelination Study
Oral DMTs Still Common 1st Therapy for New MS Patients but Ocrevus Having Impact, Market Report Says Deciding on what therapy to use is a tough decision for people with MS and their doctors. That’s especially true for someone who is newly diagnosed. Do you go with…
What Are You Living For?
Maybe it’s because I’ve been listening to too much Jackson Browne lately, but I’m distressed by the state of the world these days. And it’s not the big-ticket stuff like politics or social dysfunction that’s got me worried, either (though both take turns keeping me up nights). It’s…
The Graduate
The queue to get into Canterbury Cathedral in bright sunshine seems endless. The quandary of being Dracula strikes me — I’ll either fry in the sun or fry in a church set up during the Roman occupation of Britain! Luckily my condition is MS, so we seek solace…
In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…
It has been a while since I’ve written a column. Within one month, two of my relatives have passed away. Spiritually, I believe in eternal life. However, in my earthly existence, death has left its sting. Multiple deaths, physical pain, and disappointments have catapulted me into a cycle of…
Every time you post something on social media, pay a bill online, or make an online purchase you leave behind little data footprints. Now, an extensive report by National Public Radio and the nonprofit news organization ProPublica is pulling the curtain back on companies who are…
Brain Iron Levels Correlate with MS Progression, Disability Risk, Study Shows Currently, doctors measure shrinkage in the brain as a way to predict physical and cognitive decline in people with multiple sclerosis (MS). But it takes a long time to see this brain atrophy on a standard…
Phew, What a Scorcher
Phew, what a scorcher. The summer of 1976 was the last time it was this hot in the United Kingdom. My lasting memory of that summer was not lazing on a beach, but sweltering as a relief manager in an “off-licence,” which is a liquor store. I probably sold…
It’s not unusual to hear someone say, “I was diagnosed with MS in [fill in the year], but I probably should have been diagnosed five or 10 years earlier.” Now a study reports that during the five years before someone is diagnosed with multiple sclerosis (MS), it’s quite…
I am a self-described homebody. I enjoy social gatherings and getting out, but I always look forward to coming home. Within five minutes of pulling into the garage, I am in sweats and a T-shirt. My demeanor immediately softens. Home is familiar, and in familiarity I find safety. Sometimes, safety…
I’m now three months past my second round of Lemtrada treatments, so it’s time for an update. I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus…
I am told I have primary progressive multiple sclerosis (PPMS), and my symptoms appear to be in line with that diagnosis. I continually have a slow gait, leg weakness, balance issues, and fatigue. There is never a break from those symptoms. Intermittently, I have cognitive issues, slurred speech, and burning…
Missouri Trial to Examine if Fasting Alters Gut Microbiome and Immune System of RRMS Patients in Helpful Ways The impact of various diets on multiple sclerosis (MS) has been studied, but this new study will look into whether fasting has an impact. The researchers at Washington University…
Giving Your Brain a Good Stretch
I turned 40 this year, and it seemed like a mighty fine time to stop and take stock. After all, I’m at the midway point, and if I want the second half of my life to be as fun and productive as the first, I have to make…
The U.K.’s National Health Service (NHS) turned 70 last week. In England, yes, we are mourning our semi-final defeat by Croatia in the World Cup, but to most of us, the NHS is the U.K.’s crowning glory. There are innumerable problems and proposed solutions involving the institution, yet…
I’ve written before about medical marijuana (MMJ) and its use by those with MS. I’ve also written about how MS affects gun ownership. This column is about both MMJ and guns. Thirty-one states, plus the District of Columbia, Puerto Rico, and Guam have legalized the use of marijuana for medical use.
I am a hot mess. No, really, I am a hot, sweaty, gel-pack-laden mess. My AC kicked it three hours ago, three hours before Orange County hit a record 112 degrees Fahrenheit. Mother Nature is drunk. And I am getting warmer. Heat is kryptonite to anyone with multiple sclerosis…
I was talking on the phone with a friend who also happens to have MS. I warned her the extra noise was from me opening the stack of mail I’d been avoiding for a couple of weeks. I have my bills set up for auto-pay, so I was in…
Lately, much of my work has been focused on the relationship between the gut and MS. As I experience ongoing gut issues, I need to learn how to advocate for myself by learning as much as I can about gut bacteria and finding the right…
Second in a series. Read part one. The thing about functional electronic stimulation (FES) devices, at least to me, is waiting for them to engage. No matter how much I prepare myself, I’m still surprised — on pins and needles, if you will —…
Let’s say there’s an MS study reporting that researchers have discovered a substance that seems to prevent nerve cell damage. But they’ve only studied this on mice. Or, there’s another study that claims that something can help reduce MS pain, but the study involves only 19 patients. Or, an…
Medical Cannabis Favored to Treat MS Spasticity and Other Ills by Doctors in Australia, Survey Finds I’ve been thinking about using medical marijuana to treat my multiple sclerosis (MS) spasticity — specifically CBD oil. It appears that some healthcare providers would also think that’s a good idea. Most…
Hi, everyone. I’m absolutely exhausted. And it’s all the fault of the World Cup. Not from any sort of secondary exercise while watching games, but because it’s given me the week off work. England lost their last group match to Belgium on June 29. Their last 16 game…