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Tuesday, December 31, 2019
Wednesday, December 25, 2019
Lipid profile is associated with decreased fatigue in individuals with progressive multiple sclerosis following a diet-based intervention: Results from a pilot study
Caroline Craven and Michael Wentink share tips on staying socially engaged when living with MS.Photos Courtesy of Contributors
For many people who live with multiple sclerosis (MS), dealing with the physical symptoms of the disease is just one part of the struggle. Feeling lonely and isolated is another.
It can seem like the world is divided by an invisible line: on one side, “healthy” people, and on the other, people with MS, and sometimes the gap feels too wide to cross.
People with MS can experience isolation in a number of different ways, says Meghan L. Beier, PhD, a rehabilitation psychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore.
“This can be true even if an individual has a very supportive family or a good social support network,” says Dr. Beier. It can be common to feel as though others don’t really understand you, your disease, or how it impacts you, and that can feel very lonely, she says.
The feeling of not being understood by others can contribute to a sense of vulnerability as you try to manage concerns both immediate and distant related to MS, such as your energy level, your disease progression, and the judgments of others.
And that sense of vulnerability, in turn, can make isolating yourself seem like a safer option, even though it’s really not, says Caroline Craven, a writer and marketing consultant in her early fifties who lives outside of Pasadena, California. Craven was diagnosed with MS in 2001.
“Even though fatigue and pain can make it hard, we need to get out there and be with other people,” says Craven.
MS: Unless You Have It, You Don’t Really Understand
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Saturday, December 21, 2019
MS Activists' work throughout the year resulted in significant increases for MS funding priorities. These increases include:
- $16 million for the MS Research Program at the Department of Defense - an over $10 million increase from FY 2019.
- $6.1 million to the Lifespan Respite program - an over $2 million increase from FY 2019. These grants to states maximize existing resources and better coordinate and deliver quality respite services to family caregivers.
- $41.7 billion to the National Institutes of Health to fund biomedical research - a $2.6 billion increase from FY 2019.
These bills also included other important priorities benefiting people living with and affected by MS:
- The Patient Centered Outcomes Research Institute (PCORI) is reauthorized until 2029. PCORI has funded approximately $70 million in MS research to help determine what treatments work best for whom, under what circumstances.
- The Creating and Restoring Equal Access to Equivalent Samples Act of 2019 (CREATES) Act was signed into law, which makes it easier for generic drug companies to obtain samples of brand-named products needed to create generics.
- A temporary (five month) re-authorization of two Medicaid demonstration programs that would otherwise expire:
- The Money Follows the Person Program which helps people get the Home & Community-based Services in the setting of their choice, and
- The Spousal Impoverishment Program, which protects a portion of a couples’ income and assets for the needs of the “well spouse” that would otherwise be used to pay for the nursing home care of the other spouse.
- Manual complex wheelchair exemption from the Medicare competitive bidding process that protects access to this important equipment.
To find out more about the Society’s advocacy priorities, please click here.
information source: https://www.nationalmssociety.org/About-the-Society/News/Key-MS-Policy-Priorities-Funded-for-FY-2020
Thursday, December 19, 2019
Healthcare Providers: Medical providers that specialize in the diagnosis and treatment of conditions and symptoms related to MS.
CLICK: TO FIND DOCTORS and RESOURCES
The National Multiple Sclerosis Society does not endorse any of the providers listed here. The information contained in Find Doctors & Resources is thought to be reliable but is not guaranteed to be accurate. It is compiled from provider descriptions of their own services as well as other public data sources and is subject to change without further notice. For those providers listed as Partners in MS Care or Center for Comprehensive Care, the Society approves those resources to ensure they meet specific criteria of the National MS Society.
Depression is higher in African American women regardless of income, and anxiety is higher in
African American women with the lowest income, according a study
presented by Jagriti Bhattarai, MD.
The emotional needs of African American women with MS, stopping nerve damage, picturing cognitive problems and complementary and alternative medicine were among the topics presented at the recent Tykeson Fellows Conference.
Thursday, December 12, 2019
A Four-to-Four Approach
Wanna learn how? Then start watching this video right now!
An awesome video.
Remember to share with friends and those in the MS healthcare industry
Learn More - See More - Register Here
Wednesday, December 11, 2019
I was finding that even though I thought I’d emptied my bladder after letting the dog out, I needed to pee again just 5 or 10 minutes later after answering the door. And not just a dribble: I re-emptied nearly as much as I had the first time. And it happened well more than once that night.
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Sunday, December 8, 2019
Tuesday, December 3, 2019
By Becky Upham
Last Updated: November 05, 2019
Among people with MS considering leaving their employment, symptoms of the disease were the primary driver for people in their thirties and fifties, whereas psychological reasons were the dominant force for people in their forties.
Medically Reviewed by Samuel Mackenzie, MD, PhD
Finding the perfect gift for your friend with MS makes both of you feel good! Getty Images
Buying gifts is tough. Do you choose something practical or fun? Should you go with a safe gift purchase or something the recipient wouldn't buy for themselves? And if the person you're buying for has multiple sclerosis (MS), how can you make sure the gift is spot-on?
"Gift-buying for a friend or loved one with MS can be quite simple, but you should always consider how honest they are with you about their symptoms," says Aaron Nicka, an occupational therapist at the Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research in Ohio.
Someone who is open about having trouble with a certain task might appreciate a tool or gadget that is obviously an “adaptive” device, while a person who is more private about MS and its effects would likely prefer a gadget that could make life easier for anyone but isn’t specifically aimed at people with disabilities.
If you do buy a gift that’s intended to help with a complication of MS, think about who else will be there when the gift is opened. And if you think there’s a chance your friend or relative might feel embarrassed opening your gift in front of others, present it when the two of you are alone, or have it delivered, so no one else is present when the gift is opened.
Of course, even a person who is open about his MS symptoms may prefer to receive gifts that have nothing to do with MS. So keep your loved one’s hobbies, interests, and activities in mind when you’re gift shopping — along with his abilities. A shirt with tiny buttons isn’t a great gift for someone with fine motor control problems, even if it’s in his favorite color.
Most of all, be sure the gift is about the recipient as he is, and not about how you would like the recipient to be. Giving a gym membership to someone who doesn’t like to exercise or a vegetarian cookbook to someone who enjoys meat isn’t likely to go over well. For special occasions, give gifts you think your loved one with MS will really like.
To ease gift-giving woes, Nicka and a few people with MS share some ideas for good — even great — gifts.
See more here
Monday, December 2, 2019
By: Aaron Boster, MD
Published: December 02, 2019
As the field of neuroimmunology evolves at an unprecedented rate, keeping up with the latest advancements in diagnosis and treatment of multiple sclerosis (MS) proves challenging. Many neurologists—even those who spend most of their time in the MS space—are overwhelmed in their clinical practice and research endeavors. Therefore, I intend to set aside interleukins and cytokines, pathophysiology, and immunopathogenesis and instead share some clinical pearls to help both simplify and advance your care for patients and families affected by MS.
My goal is to share a simple approach that will serve you and your patients well, with the aim of helping patients with MS be the best version of themselves possible despite their condition. The following recommendations are based on my formal fellowship training; my 13 years of experience dedicated to MS clinical prac- tice; my review and contributions to the canon of MS literature; my participation in over 65 MS clinical trials; and, most important, the things my patients have taught me.
My rubric is straightforward. The goal is for patients to be “4 for 4” in key factors that have a significant impact on this condition. Here’s what you can do:
Initiating and Monitoring MS TherapyAs the clinician, you should help the patient choose the most effective DMT they are comfortable taking. Forgo the flawed escalation model, in which providers prescribe mildly effective drugs and allow patients to accrue neurological disability before escalating them to a more effective agent. Brain lost is never regained, and early brain and spinal cord damage sets a poor long-term trajectory. It is not the clinician’s job to be paternal and decide what risk a patient should or should not be exposed to. Instead, it is the clinician’s ethical obligation to educate the patient on the seriousness of untreated or undertreated MS and help their family understand how to place the risks and benefits of the given therapeutic in the context of the disease. I cannot stress this point enough.
Once you’ve initiated treatment with an effective medication, monitor the patient by listening to them, examining them to iden- tify disability progression, and reviewing serial neuroimaging.
At each visit, ask the following treatment-related questions:
All ambulatory patients should perform a timed 25-foot walk at each visit. This single test is more predictive of progression of disability than the entire traditional neurological examination. A 20% change in timed walk is both statistically and clinically signif- icant.1,2 Also, each patient should be screened for cognitive impairment. I’m partial to the Symbol Digit Modalities Test because the 90-second matching quiz is extremely sensitive; in fact, a 4-point drop is statistically and clinically significant.3
In addition, a magnetic resonance imaging (MRI) scan of the brain should be performed annually based on The Consortium of Multiple Sclerosis Centers protocol.4 I suggest that you personally review the scan, comparing it with the previous year’s results, and look for (1) new enhancing lesions, (2) new or enlarged T2 bright lesions, and (3) new T1 black holes and visual evidence of accelerated central atrophy (via measurement of the width of the third ventricle). I recommend imaging the cervical spinal cord every few years, even in the absence of new symptoms attributable to the spinal cord.
If the patient experiences breakthrough disease activity (new MRI lesions or clinical attacks), then discuss switching to a different highly effective DMT. Therapeutic inertia—identifying a clinical problem and not making changes to address it—contributes to poor outcomes, and both patients and practitioners are guilty of participating. I urge you to not sit idly by as your patient accrues brain damage and neurological disability.
It is equally important to not forget about invisible symptoms. If a highly effective DMT slows disability but the patient is miserable, then the clinician has not done the best job. The goal is to both slow disease activity and improve quality of life. Much of MS pathology is invisible and easily missed during a rushed clinic visit. Therefore, I recommend inquiring about invisible symptoms, including cognitive impairment, depression, fatigue, and bladder function, at each visit. When these symptoms are uncovered, I recommend they be aggressively treated.
At each visit, ask patients the following symptom-related questions:
Optimizing Patient LifestyleThe remaining 3 of 4 factors have to do with patient empowerment. It is now known that untreated cardiovascular risk factors drive MS disease progression faster.5 Sedentary lifestyle, obesity, hypertension, hyperlipidemia, and prediabetes must all be considered in the management of patients with MS.6
Although it’s safe to assume that no one in the health care community promotes the smoking of tobacco, I am amazed at how passive our community of treaters is in fighting against tobacco use. It is imperative to educate patients that smoking increases
the risk of developing MS and, if they already have MS, speeds up disability progression.7 Smoking is the single most impactful modifiable risk factor in MS, so help patients who smoke quit by engaging them in a dialogue and connecting them with resources.
Encourage patients to move. Physical activity improves cognition, mood, energy levels, sleep quality, spasticity, and ataxia and buttresses patients against future attacks.8 Exercise programs should be customized to each patient’s interests and limitations but, ideally, address cardiovascular fitness (eg, stationary recumbent bike), balance (eg, chair yoga), core strengthening (eg, Pilates), and flexibility. In my experience, water-based exercises are excellent for patients with MS: A person weighs less in water, so moving on a weak leg is easier; if balance is off and the patient falls to the left, the water pushes back to the right. In addition, heat sensitivity is less of an issue because convection pulls heat off the body. If you are unsure where to start, consider sending the patient to a qualified neurological physical therapist who can introduce appropriate physical activity.
Although no diet to date has proved to slow MS disease progression, many diets can help improve cardiovascular disease; combat obesity; and, importantly, boost energy levels.9 I recommend a heart-healthy diet and avoiding fast food, sugar-laden foods, processed foods, and nearly unpronounceable/unrecognizable ingredients. Eating clean can lead to some amazing changes in a patient.
At each visit, ask patients the following lifestyle-related questions:
As an experienced clinician, I stand by this simple rubric to optimize the health and quality of life of a person affected by MS. If you help the patient and family embrace these 4 factors, you have changed their lives for the better.
1. Schwid SR, Goodman AD, Mcdermott MP, Bever CF, Cook SD. Quantitative functional measures in MS: what is a reliable change? Neurology. 2002;58(8):1294-1296. doi: 10.1212/wnl.58.8.1294.
2. Kragt JJ, van der linden FA, Nielsen JM, Uitdehaag BM, Polman CH. Clinical impact of 20% wors- ening on timed 25-foot walk and 9-hole peg test in multiple sclerosis. Mult Scler. 2006;12(5):594-598. doi: 10.1177/1352458506070768.
3. Benedict RH, Deluca J, Phillips G, LaRocca N, Hudson LD, Rudick R; Multiple Sclerosis Assessments Consoritum. Validity of the Symbol Digit Modalities Test as a cognition performance outcome measure for multiple sclerosis. Mult Scler. 2017;23(5):721-733. doi: 10.1177/1352458517690821.
4. 2018 revised guidelines of the of the Consortium of MS Centers MRI protocol for the diagnosis and follow-up of MS. The Consortium of Multiple Sclerosis Centers website. mscare.org/page/MRI_ protocol. Updated February2018. Accessed October 10, 2019.
5. Moccia M, Lanzillo R, Palladino R, et al. The Framingham cardiovascular risk score in multiple scle- rosis. Eur J Neurol. 2015;22(8):1176-1183. doi: 10.1111/ene.12720.
6. Jakimovski D, Weinstock-Guttman B, Gandhi S, et al. Dietary and lifestyle factors in multiple scle- rosis progression: results from a 5-year longitudinal MRI study. J Neurol. 2019;266(4):866-875. doi: 10.1007/s00415-019-09208-0.
7. Wingerchuk DM. Smoking: effects on multiple sclerosis susceptibility and disease progression. Ther Adv Neurol Disord. 2012;5(1):13-22. doi: 10.1177/1756285611425694.
8. Motl RW, Sandroff BM. Benefits of exercise training in multiple sclerosis. Curr Neurol Neurosci Rep. 2015;15(9):62. doi: 10.1007/s11910-015-0585-6.
9. Katz Sand I. The role of diet in multiple sclerosis: mechanistic connections and current evidence. Curr Nutr Rep. 2018;7(3):150-160. doi: 10.1007/s13668-018-0236-z.
10. Sintzel MB, Rametta M, Reder AT. Vitamin D and multiple sclerosis: a comprehensive review. Neurol Ther. 2018;7(1):59-85. doi: 10.1007/s40120-017-0086-4.
Article found here: Neurology Live : https://Live t.ly/vLnpp