November 27, 2023 Columns by Ed Tobias MS news notes: Vumerity, herpes virus, caregivers Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at some of whatās been happening: A good report for Vumerity Final results are in from the EVOLVE-MS-1 clinical trial for patients with…
November 20, 2023 News by Steve Bryson, PhD iConquerMS expands research efforts to focus on MS caregivers iConquerMS, a research initiative where people affected by multiple sclerosis (MS) contribute their health data and ideas, is expanding its research program to include caregivers of people with MS. Established in 2014 by the Accelerated Cure Project (ACP), iConquerMS has launched a new website and research…
May 16, 2023 by Lori Lebson Guest Voice: My journey from MS caregiving to healthcare science Guest columnist Lori Lebson completed her PhD in neuroimmunology at the University of South Florida. After completing her doctorate, she continued her education as a National Multiple Sclerosis Society Neuroimmunology Postdoctoral Fellow at Johns Hopkins. Lebson has more than 10 years of pharmaceutical experience and serves as the head of…
April 13, 2023 News by Andrea Lobo, PhD Cariloop partners with Walgreens to support MS patients, caregivers Cariloop has teamed up with Walgreens to provide support services at select neurology-specialty pharmacies to people with multiple sclerosis (MS) and their caregivers. Through its caregiver platform, Cariloop offers services such as professional counseling and cloud-based tools to help families manage challenges and plan for caregiving-associated activities.
February 21, 2023 Columns by Jamie Hughes Thankful for caregivers: What MS has taught me about support Itās been a couple weeks since my last column, and things with my mother have proven more challenging than we expected. Sheās had another minor procedure to stop fluid from building up in her chest, but she is progressing with her rehab and continues to gain strength. Hopefully, weāll…
June 3, 2022 Columns by John Connor Romance Means We Took the Weekend Off MS, Nearly There is a more heavyweight subject I could inflict on you lot, but letās put our feet up this week. Even I can do it with the one leg. My wife, Jane, and I celebrated our 30th wedding anniversary last Friday. Youād have thought weād have planned a big…
April 22, 2022 Columns by John Connor The Tricks of Intermittent Catheterization When Youāre in a Wheelchair For the few of you lot lucky enough not to know about intermittent catheterization, itās shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…
April 8, 2022 Columns by John Connor ‘Top Gear’: Unfortunately, Iām a Backward-leaning Jeremy Clarkson Before anyone in the U.S. asks who this Jeremy Clarkson fella is, know that petrol heads in your country know exactly who he is. Indeed, the Brit motoring show “Top Gear,” at its height a few years ago, made him and his fellow presenters stars the world over. It…
January 28, 2022 Columns by John Connor Having My Own ‘Long Bad Friday’ In truth, my long, bad Friday started on Thursday afternoon at 5 p.m., although it seems wrong in the middle of a black, midwinter night to still call it afternoon. Still, if you live in Alaska, summer nights never even start! (OK, I’ll stop musing about the vagaries of Earthās…
September 3, 2021 News by Shayna Korol Patients, Caregivers Asked to Help Adira in Choosing Grant Awards TheĀ Adira FoundationĀ is inviting people with neurodegenerative diseases and their caregivers to join a grant proposal review committee. A nonprofit foundation, its mission is to unite people affected by some of most common neurodegenerative diseases ā namely, multiple sclerosis,Ā amyotrophic lateral sclerosis, Alzheimer’s disease, Huntington’s disease,Ā and…
June 22, 2021 News by Marta Figueiredo, PhD MS-related Fatigue Strongly Affects Youngsters’ Functioning Multiple sclerosis and its associated fatigue negatively affect school performance, mental health, and physical and social functioning in children and adolescents with the disease, according to a review study. Pediatric-onset multiple sclerosis (POMS) also was associated with negative effects on social functioning, mental health, and quality of life in…
October 26, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Caregivers, VX-765 Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…
October 20, 2020 News by Marta Figueiredo, PhD Majority of MS Patients in US Report Mistreatment by Caregivers in Survey In a nationwide survey of caregiver abuse and neglect among Americans withĀ advanced multiple sclerosisĀ (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common. Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey…
January 29, 2020 News by Marisa Wexler, MS Mental Health of Women Affected by Caring for Children with MS, Study Suggests Caring for children with multiple sclerosis (MS) can affect the mental health of their mothers over the long term, a study has found. The study, “Increased mental health care use by mothers of children with multiple sclerosis,” was published in the journal Neurology. People with…
April 1, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Reaction to SPMS DMT Approval, Ozanimod’s FDA Application, Caregiving Partnerships, a New Preventive Medication? MS Patient Groups React Favorably to Mayzent Approval, But Question Therapyās Price Tag The approval of this medication is very good news. However, as the headline indicates, it comes with a relatively hefty cost. It’s approved for active secondary progressive multiple sclerosis (SPMS), and many of us have SPMS…
November 16, 2018 Columns by Jamie Hughes Excelsior! Learning from the Life and Loss of Stan Lee Like many comic book geeks, Iāve been sitting shiva for the last few days, mourning the passing of Stan Lee. I never met the man in person, but I know many people who have. They said he was warm, open, and enthusiastic. He was a passionate and tireless creator…
November 12, 2018 News by Mary Chapman Embracing Carers Expanding Global Reach to Brazil, Possibly China To more widely recognize and help those caring for people with multiple sclerosis (MS) and other chronic diseases, Merck KGaAĀ (known in the U.S. and Canada as EMD Serono) is expanding its global Embracing Carers program to include Brazil and possibly China. āCaregivers are a hidden pillar within the…
October 31, 2018 News by Mary Chapman Collaboration Formed to Further MS Education, and to Help MS Caregivers Can Do Multiple Sclerosis and Embracing Carers are collaborating to help caregivers better understand the effects of multiple sclerosis (MS), and to help them take better care of themselves. The collaboration enlisted Can Do MS, which delivers health and wellness education programs to families living with MS, to…
June 21, 2018 News by Kara Elam Webinar Focuses on Importance of Maintaining Independence for Progressive MS Patients When a progressively debilitating disease like multiple sclerosis (MS) causes a patient to feel physically āwiped outā after a simple daily activity, such as a shower, it is of utmost importance for these individuals and the people in their support system to understand how they can maintain independence for…
December 15, 2017 Columns by Jamie Hughes The Greatest Gifts Christmas is just around the corner, and thatās why many people are on the fruitless quest for Fingerlings or hocking an organ to buy the new iPhone. Both might be the āhotā presents of the season, but neither of them holds a candle to the great gifts we…
November 14, 2017 Columns by Ed Tobias Thanks to Caregivers Who Share Our MS Load The MS load we carry is heavy. Some of us, unfortunately, must carry it alone. But many of us are fortunate to have someone with whom we can share the weight. It’s National Family Caregivers Month and a new survey shows just how heavy that load can…
August 10, 2017 News by Patricia Inacio, PhD Botulinum Toxin Treats MS Spasticity, But Support and Rehab Seen as Crucial to Long-term Use Spasticity in multiple sclerosis patients can be eased through a combination of botulinum toxin type A (BoNT-A) injections and rehabilitation. However, caregiver support is required to keep patients on this treatment, according to results of a retrospective analysis. Spasticity, a muscle control disorder characterized by tight or stiff muscles, is a major MS symptom. The condition is significantly detrimental to patientsā quality of life, affecting their general mobility and balance. Several oral anti-spasticity drugs are available. However, ātreatment of spasticity in MS is frequently challenging because of the complex clinical picture and the undesired effects associated with oral therapy, such as fatigue, dizziness, and hypotension,ā the researchers wrote. Previous studies show that BoNT-A, a toxin that blocks nerve activity in muscles, is an effective therapy for the management of MS-related spasticity. The long-term effectiveness and persistence of BoNT-A use in patients with MS-related spasticity, however, remains poorly investigated. The research team in Italy proposed āto investigate the long-term persistence to treatment with BoNT-A for MS-related spasticity and the determinants of BoNT-A discontinuation in daily clinical setting.ā In total, the researchers reviewed data from 185 patients, out of which 121 were considered in their final analysis. They observed that, at the end of the follow-up period, 44% of the patients in the analysis were still being treated with BoNT-A, but 56% had discontinued treatment. Overall, these results āconfirm the beneficial effect of combining BoNT-A injections with rehabilitation and highlights the crucial role of caregivers for achieving better long-term outcomes in people with MS suffering from spasticity,ā the team concluded.
May 31, 2017 News by Joana Fernandes, PhD #CMSC17 – Many Caregivers of MS Patients Say the Disease Exhausts Them Physically and Emotionally Most people who care for multiple sclerosis (MS) patients are happy to be caregivers, but they admit that their own emotional and physical health ā as well asĀ their financial security ā suffer as a result. That’s according to the online vsMS Survey, supported by Sanofi Genzyme, which assesses theĀ physical…
May 11, 2017 Columns by Laura Kolaczkowski The Importance of Caring for Caregivers “Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,” published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, is intended to give better insight into caregiver burnout, and what might be…
April 4, 2017 Social Clips by Wendy Henderson 4 Tips for Taking Care of Caregivers While few of us choose to become caregivers, many of us are faced with the task if a loved one is diagnosed with a chronic disease. The transition is a strange time for everyone involved,Ā as the nature of the relationship changes for both the caregiver and patient. However, it is…
January 8, 2016 News by Patricia Silva, PhD MS Patients and Caregivers Invited to Take Part in Meditation Study A new randomizedĀ andĀ controlled trial is recruiting multiple sclerosis (MS) patients to investigate the effect of a mindfulness-based telemedicine intervention program on patients and their caregivers. The clinical study’sĀ protocol was recently published in the journal Trials,Ā titled “A telemedicine meditation intervention for people with multiple sclerosis…