An MS Patient's story --byJennifer (Jenn) Powell

I sit amid the flood of carpet stain remover. My left leg is elongated as my right leg is at a jackknife. The cool of the fluid penetrates my sweats. Shock dissipates into pain. I try to move, but pain sears down toward my tailbone.

I sit in the dark of my tiny laundry room. My head rests on the rim of the washing machine. I catch my reflection in time to watch a tear fall from my eye.

Ifallmore than I care to admit. I rarely hurt myself unless you count a bruised ego. Given the frequency, one fall isnt bad. But it isnt good, either. A fall is a fall. If they occur regularly, it is time for a change.

Writing inMS Focus Magazine, neurologistMichelle H. Cameron, MD, PT, noted that most of her patients have balance issues and fall and injure themselves often. About half of those with MS have fallen once in the past six months, and one-third have fallen several times each month during that period, she wrote.

More than half of people with MS have been injured during a fall, she added.

This is a frightening reality that is all too familiar for me.

I frequently use the Jacuzzi for short durations. The heat quells some of the moresevere bone painin my legs. Our rule is that I only take them when my husband is within earshot.

I shuffle when I am tired. My foot drop is ardently difficult. I swing it to create momentum.

In the dark, I follow our brick path to the Jacuzzi. I know this path by heart. With only the moon for light, I do not see the two-by-four that juts out from the lounge chair. The wood meets my metatarsal bones with force. With my towel on the path, I lie naked on the lounge. I am suddenly grateful for our house rule.

My fifth metatarsal did not heal. I endured apainful surgery, bone graft, and weeks of immobility instead. This surgery and subsequent recovery did not have to happen.

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byJennifer (Jenn) Powell|August 12, 2021

To the person who left the note on my windshield:

I wish you would have asked. I would have told you that I have secondary progressive multiple sclerosis, a neurological disease that impairs my ability to walk. My MS has worsened over time and will continue to progress. I cant predict where I will be in a year, and I may need awheelchair. Thisplacardallows me to park my car near the entrance to the grocery store.

I wish you would have asked. I would have told you thathot weather makes me sick, as the heat magnifies my symptoms. I slur my words, shuffle my feet, become confused and disoriented, and ultimately succumb to heat exhaustion. This placard allows me to park in the shade.

I wish you would have asked. I would have told you about thechronic pain, which never stops, and often brings me to my knees. Id tell you about the deep bone ache, the musculoskeletal pain, the incessantspasticity, and theperipheral neuropathy. I would have noted that the only time I am not in pain is when I am sleeping, and that each step I take is difficult. This placard allows me to park near the entrance to the store.

I wish you would have asked. I would have told you about thefatigue. I would have told you how difficult it is to live. How the exhaustion never improves. And how malaise and lethargy are constants. This placard allows me to park in the first few spaces.

You did not ask. Instead, you left a note. You wrote that I was lazy. You wrote that I stole the space from another person who needed it more. You called me names.

I would give up the placard for life without multiple sclerosis. But I cannot change what is. Imake the best of every day, one day at a time. I will not let ignorance change my heart. I will work harder to erase the stigma and elevate the need for acceptance.

Now let me ask you a question. Next time will you ask?

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I am posting this article because, well, I hardly ever sleep, as My brain is too busy thinking ~~~ Says: Stuart Schlossman - (Patient advocate for MS community)

Read when youve got time to spare.

Being a leader requires confidence, decisiveness, and quick thinking--none of which are served by overthinking every decision or scenario or worrying about every move you make. Theres a time to think, a time to act, a time to reflect, and a time to move forward.

Overthinking causes us to spend too much time thinking, getting stuck in a loop of inaction, and turns positive reflection into debilitating worry. Not only does it not move us forward, it moves us backward and downward.

For three decades, Ive been coaching employees and entrepreneurs with tendencies to overthink things, and I can share 11 mental tricks to dash the dissecting and stop the overscrutinizing.

Overthinking goes into overdrive when we keep revisiting decisions we make, refusing to close the door on a call that has been made. Believe that youve done your due diligence, and revisit something youve already decided only when youre presented with new information.

Constantly ruminating and going over scenarios and possibilities often disguises itself as problem solving. It feels like youre doing something good and useful. But youre not, youre just spinning in a circle. Recognize when youre overthinking something, dont act like its problem solving, and press fast-forward.

TORONTO, Nov. 09, 2021 (GLOBE NEWSWIRE) -- The Multiple Sclerosis Society of Canada (MS Society) is proud to announce a partnership with the National Multiple Sclerosis Society (NMSS) to support a study that aims to understand the MS prodromal period -- an early set of signs and symptoms indicating onset of a disease before more typical symptoms or signs appear. Prodromal stages are well-recognized in other neurodegenerative and immune-mediated diseases and emerging evidence supports the presence of a prodromal period in MS.

The partnership was launched early this year with a call for proposals focused on the early detection of MS prior to the accumulation of neurological deficits. Following a rigorous review progress, a Canadian-led study conducted by Dr. Helen Tremlett at the University of British Columbia was one of the 13 proposals selected.

Dr. Tremlett and her team will examine the prodromal period by identifying predictors of MS across different groups of people in the years before MS onset in a cohort of more than 250,000 people in Canada (in British Columbia and Ontario) and Sweden. They will use health administrative databases, workplace data and patient registries to understand the features of the prodrome and how they differ in relation to key sociodemographic factors, including biological sex, socioeconomic status, birth country and disease course, such as those living with primary progressive MS versus relapsing-remitting MS. They will also examine how these features impact disease progression. The researchers will use advanced machine learning techniques to help identify predictors and patterns from the data.

Through this partnership with NMSS, we are focusing on identifying those at greatest risk for this chronic disease, says Pam Valentine, President and CEO, MS Society of Canada. A better understanding of the prodrome means potentially delaying the onset of MS through earlier treatment, creating more targeted therapies or even preventing it from developing in the first place.

Were pleased to partner with MS Society of Canada to learn more about early detection of MS, says Cyndi Zagieboylo, President and CEO of the National Multiple Sclerosis Society. We will do whatever it takes to identify MS before it takes hold so people can get on a treatment as early as possible to minimize disability caused by MS. The MS Society of Canada is providing wonderful leadership around this important work.

In prior studies, Dr. Tremlett and team have shown evidence of a prodromal period for at least five years prior to the onset of MS symptoms. Their findings indicated higher rates of hospital and physician visits, and an increase in prescription drug use in the five years leading up to MS onset, relative to the general population. These included higher rates of common health issues, such as pain, sleep disorders, anemia, fatigue, mood and anxiety disorders, and migraine headaches.

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byMarisa Wexler MS|November 2, 2021

Not drinking alcohol significantly increases the risk of developingmultiple sclerosis(MS), especially if a person is also a current or former smoker, according to a new study.

These findings add to the knowledge, discovered in multiple previous studies, that alcohol decreases the activity of the immune system. According to the researchers, this may account for the known connection between alcohol consumption and reduced MS risk given that MS is characterized by an over-active immune system.

While these new data are relevant for clinical practice and give no support for advising healthy individuals with MS heredity, or individuals with MS, to completely refrain from alcohol, they also dont support increasing alcohol consumption, the researchers said.

Consumption of alcohol has detrimental effects on other disease conditions, and better understanding of the mechanisms behind our findings may help to define ways to achieve protection against MS by other means than alcohol consumption, they wrote.

The study, The increased risk of multiple sclerosis associated with HLA-DRB1*15:01 and smoking is modified by alcohol consumption, was published inScientific Reports.

MS is caused by the immune system attacking healthy nerve cells, but the reasons that the disease develops are incompletely understood. Environmental factors such as drug use, as well as a persons genetics, all are thought to contribute to the risk of developing MS.

Although smoking cigarettes is a well-established risk factor for MS, its less clear how alcohol affects MS risk. Now, a trio of researchers in Sweden conducted a case-control analysis, using a Swedish population database, in an attempt to tease out this effect. The database, designed to examine environmental and genetic risk factors for MS, includes individuals ages 1670.

The analysis included 2,059 people with MS, and 2,887 without. Healthy individuals, used as controls, were matched to patients by age, sex, and area of residence. Across both groups, roughly one-third of participants reported never drinking alcohol, and about half had smoked cigarettes in their lifetime.

Using statistical analyses, the researchers calculated the effect of alcohol consumption on MS risk, taking into account smoking status as well as whether or not individuals were positive forHLA-DRB1*15:01, a genetic variation known toincrease the risk of MS. Of note, scientists have identified more than 200 genetic risk variants, or disease-associated mutations, that potentially contribute to MS susceptibility.

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Valuable information on Multiple Sclerosiscan be found on the internet. However not all, is from reliable sources.

Use the links found on this page as a Valuable guide to Multiple Sclerosis resources.

Also, your doctors may have better options for information.

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Ocrevus data to show sustained reduction in disability progression through 8 years for primary progressive multiple sclerosis (PPMS) and 7.5 years for relapsing MS (RMS)

Long-term safety analysis of all clinical trials will reinforce the consistently favorable benefit-risk profile of Ocrevus

Enspryng data to show efficacy and safety sustained over four years of treatment for people living with neuromyelitis optica spectrum disorder (NMOSD)

Study design for SAkuraBONSAI, a new study on disease activity and progression in Enspryng patients, who are treatment naïve or where prior rituximab (or biosimilar) treatment has failed, will be presented

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'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.