A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Disclaimer: '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, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
WEST VALLEY CITY, Utah (ABC4 Utah) - Elisha Daines has multiple sclerosis. Just two years ago she was in a coma and even declared brain dead by her doctors. Through headphones there was one song her family played repeatedly for Elisha to hear, “Don’t Stop Believin’” by Journey.
Heather Drew began golfing as a young girl but retired in 1999 after she was diagnosed with multiple sclerosis, a chronic disease that attacks the Central Nervous System. In 2011 she returned to her professional career. Drew will compete at the 2014 Pepsi Northwest Women’s Open in Federal Way July 21-23.
— Image Credit: Contributed Photo
Since she was a child, Heather Drew knew she wanted to compete in the Ladies Professional Golf Association.
She graduated from University of Arizona in 1981 and just a few months later turned pro.
“It was something I really wanted to do,” she said.
For the next 18 years, Drew competed in tournaments, taking second place several times as well as making the top 10 often, she said.
Drew will be one of as many as 60 women to participate in the 2014 Pepsi Northwest Women’s Open at Twin Lakes Golf and Country Club in Federal Way.
Drew describes golf as a sport that needs single-minded focus to overcome the challenges — and her own golfing career has included many adversities.
In 1996 she was diagnosed with multiple sclerosis, an incurable, chronic disease that attacks the Central Nervous System.
When she was diagnosed, Drew was afraid of the unknown, she said.
“I just thought everything was over,” she said.
Drew didn’t know much about MS before her diagnosis, and when she received it her misconceptions painted a picture of a life much different than her golfing career, she said. She thought she might need a walker or a wheelchair. But each case of MS can manifest itself differently, and Drew’s manifestation is numbness, she said.
People often think multiple sclerosis is always debilitating — and Drew thought so too, at first.
“[But] if you have MS, it doesn’t mean your life is over,” Drew said.
There is a variety of assistive devices that can help you manage the symptoms of multiple sclerosis (MS). An assistive device is a tool or product that makes a certain function easier to perform. An occupational or physical therapist can prescribe these devices.
Below find a list of assistive devices and equipment that are available.
Mobility Aids for Multiple Sclerosis
Orthotics: Orthotics are lightweight inserts worn inside the shoes that can be used to increase stability and decrease fatigue. Orthotics can help with spasticity in the foot and can help brace the foot.
Leg braces: Weakness of the leg muscles may make it more difficult to maneuver on stairs, rise from a chair, or walk. An ankle-foot brace can stabilize the ankle when there is weakness in the foot muscles. This brace fits into an ordinary shoe and prevents the toes from dragging. If muscle weakness occurs in the neck, a neck brace may be recommended to make you more comfortable.
Canes: A cane may be the most useful tool when one leg is weaker than the other, or when you have mild problems with balance. Here are some guidelines for cane use:
The cane should be held on the stronger side of the body while the weight is shifted away from the weaker side.
A quad cane (or four-legged cane) provides more stability than a standard cane.
It is a good idea to have a session with a physical therapist to learn how to properly use your cane.
Walkers: Walkers may be more appropriate when there is significant leg weakness. They can also provide support for maintaining balance. Wheels or platforms may be added to the walker if necessary.
Wheelchairs or scooters: Wheelchairs or power scooters may provide more independence. These are usually recommended when a person experiences excessive fatigue, unsteadiness, or occasional falls. A scooter can add a great deal of independence for a person with limited mobility.
Aids for Activities of Daily Living
Hand-held shower head
Grab bars installed in shower/tub
Grab bars near toilet
Toilet seat with armrests (a raised seat with armrests can be placed over a regular toilet)
Velcro, buttons, zippers, and hooks on clothing
A stool for sitting while dressing
Wheeled utility cart
Electric can opener
Specialized utensils, such as large-handled spoons and forks, or ''sporks,'' and rocker knives
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Using this collection of articles can help you manage the hot days ahead, with tips and ideas for cooling off, getting nutritious no-cook meals on the table, staying active, getting a good night’s sleep and more. -
Some public utilities commission offer medical exemptions for those whose health conditions require higher power consumption. Learn what states are doing to help people save on utilities and beat the heat this summer.
Although the practice of yoga originated in the distant past, it’s still relevant today, especially as a means to connect the mind and body, reduce stress and ease pain associated with a number of diseases, including multiple sclerosis (MS).
With approximately 400,000 people in the U.S. affected by MS and the number of cases continuing to rise worldwide, it’s little wonder that many of our lives are touched by this disease through personal experience, family or friends.
At an early age, Mindy Eisenberg of Birmingham, Mich. watched first-hand as her mother battled the emotional, physical and financial toll of MS. Her mother’s disease progressed rapidly, and within a few years, she was living in a wheelchair, later requiring full-time nursing home care.
Those difficult childhood memories spurred Mindy’s desire to help others, which later translated into a career as a certified yoga instructor and founder of Yoga Spirit and Wellness, LLC, a program specializing in adaptive yoga therapy. Adaptive yoga therapy is an innovative, multidimensional approach, which is tailored to the whole person and uses the disciplines of structural and therapeutic yoga, breathing, meditation and relaxation techniques, which can complement health care and other alternative approaches for health and well being.
At four locations (and soon to be five) throughout southeastern Michigan, Mindy offers classes that she developed called Yoga for MS. The classes focus on guiding, assisting and empowering MS patients with varying symptoms. While some Yoga Moves MS students may require a cane, walker or wheelchair, or suffer from fatigue, pain, depression or cognitive issues, they may still be able to move about independently. Students experience the core benefits of yoga, including balanced energy, increased flexibility/strength, improved digestion and circulation and better sleep patterns. The small group classes (8 to 12 people total) are staffed by two or more instructors and last two hours, which allows patients to receive the personalized attention and encouragement to push boundaries, including executing poses on the mat, in the chair and even standing. The class also includes meditation, restoration and discussion about yogic or ayurvedic dietary and lifestyle principles.
What makes Mindy’s Yoga for MS program truly unique is her personalized approach to teaching. Her classes are open to all MS patients, no matter their range of mobility, and she adapts her style to each individual. For two months, Mindy has been helping a man who was skeptical and scared to attend classes. Recently, he showed Mindy his “small” victory: he could lift his leg into the car. This student, who didn’t think he could move his toes, realized that his “I can’t” turned into “I can” after tuning into his mind-body connection. Many of Mindy’s students – like this man – find that they can indeed move their toes or practice a yoga pose that did not previously seem possible.
Mindy’s vision for the future is to help more people living with MS become aware of the healing benefits of yoga and expand access to this type of therapy around the country – especially for people who are unable to afford it. She’s currently partnering with the Multiple Sclerosis Foundation’s Health and Wellness Program to make it possible for local students in financial need to attend her weekly classes. The organization’s annual fundraiser draws 300 attendees and continues to grow every year. In addition, Mindy is currently writing an adaptive yoga book for those with MS and similar conditions.
“Yoga provides mindful coping skills that would have helped my mom,” said Mindy. “It’s certainly not a cure, but can help with quality of life, comfort and peace of mind. Witnessing first-hand the ‘small miracles’ that can happen for MS patients from yoga – increased movement, added flexibility and improved mental clarity – is my motivation to keep this program going. I’m inspired by these individuals who not only are helping themselves, but healing each other through their support and commitment to this practice.”
This article is presented by Biogen Idec as part of the MS Visionaries™ program. This program recognizes individuals such as Mindy who are doing something positive for people living with MS. Biogen Idec is not affiliated with Yoga Moves MS or any of the other MS Visionaries featured on this site and does not endorse any services that they provide. Always check with your doctor before starting any exercise program. Biogen Idec does not control the websites referenced in this article and is not responsible for their content.
A woman who has the debilitating neurological condition Multiple Sclerosis (MS) has been training up home care staff on how to care for people with the long-term illness.
Sue Rushby has been giving training to staff, at Caremark in Redcar and Cleveland in North Yorkshire on MS, to give them a better understanding of what she goes through every day. Ms Rushby receives home care from Caremark.
The 56-year-old married mother-of-two, who lives in Redcar, only started to experience the first symptoms of her illness a few years ago.
During a protracted and difficult recovery from a broken ankle she noticed her leg was dragging. Other symptoms also started to appear and after a while her diagnosis of MS was finally confirmed.
Caremark’s trainer, Jan Morgan, came up with the idea of Ms Rushby training the staff so they could better understand her condition. She said: “Sue was very open and honest with our group and was able to clearly explain with a lot of humour the many complications that the condition creates. She described having two lives: one before MS and another with MS, which is something not many of us had stopped to think about.
According to a study published in JAMA Neurology, multiple sclerosis patients are greatly benefited by Biogen Idec’s Tysabri (natalizumab) and tend to relapse if they discontinue treatment. Natalizumab had a protective effect on patients who were continuously treated with Tysabri beyond a 24-dose timepoint within the study, compared to those who switched treatment or discontinued treatment.
To begin, patients with progressive multifocal leukoencephalopathy (PML), a disease that damages myelin in the brain similar to multiple sclerosis, are often infected with polomavirus John Cunningham (JC virus). If a patient’s immunity is lowered, JC virus can wreak havoc, and there is no cure for JC virus infection.
Multiple sclerosis patients are a a high risk for developing PML. Many multiple sclerosis patients are also treated with natalizumab, which is an monoclonal antibody immunosuppressive medication. Putting the two together, some multiple sclerosis patients see a risk for extended use of Tysabri and desire a different treatment.
“It’s difficult for patients to make decisions, and I think they need time to make their decisions,” said Kjell-Morten Muhr, MD, PhD, from University of Bergen, Norway, in a report from Medscape Medical News. In his experience, when the risk of PML for multiple sclerosis patients is explained, some patients initially choose to remain on Tysabri but eventually ask to switch after long consideration
Have you ever wondered if there was a novel approach to manage one or more of your MS symptoms? Adequate symptom management is key to living well with your MS. There are a variety of approaches to managing your symptoms: prescription and over the counter medications, complementary and alternative medicine, rehabilitation, and other self-help strategies. In this article we are going to explore a few unique ways to manage some of the unique symptoms you may be experiencing.
Our brain is our master computer- messages come into our brain; our brain interprets them and then sends a message out in response. Messages from receptors in our periphery (for example, in our skin and joints) send messages to our brain to convey information about sensation. These messages tell our brain whether something is hot or cold, dull or sharp, smooth or rough to name a few. If the messages that are being sent from the periphery through our spinal cord which then sends them on to our brain get interrupted or “short circuited” because of the loss of myelin then our brain doesn’t get accurate information. The brain may misinterpret the information and cause you to feel numb or tingly or itchy or even loss of sensation.
Abnormal sensations do not indicate a worse MS disease course but they can be very annoying, distracting or even painful. There is some research to support that in MS sensory retraining (providing a lot of sensation to the areas of your body that do not have normal sensation) can improve this symptom. Some examples of sensory retraining are massaging the area or using different textures to provide stimulation to the area. If your hands are numb or tingling, you may try placing your them in a bowl of dried rice or beans and working your hands through it to provide a lot of sensory information to your brain. For burning or tingling feet try rolling a frozen water bottle under your foot, it provides a massaging effect and also the sensation of cold.
Exercise can be viewed as a prescription for your symptom management and is key for your overall health and wellness. Although exercising consistently can be challenging, finding an activity you enjoy will help keep you on track. Utilizing a video gaming system like the Wii Fit Plus can increase your participation and enjoyment. It has been demonstrated that in persons with MS using the Wii can improve your balance and your consistency of exercising.
Functional electrical stimulation (FES) is a method of stimulating the peripheral nerves to cause a contraction of our muscles. Technology has improved to the point where FES can be coupled with walking or biking to have our muscles contract at exactly the right time to facilitate these activities. The WalkAide and Bioness are two such devices which cause a contraction of the muscles which lift the foot when someone is experiencing foot drop. FES can be done with the muscle movements of biking to allow someone who is weak to engage in this activity and reap the benefits of this exercise.
Many people with MS experience increased symptoms in the heat. This heat can be from the environment or from internal heat from a fever or exercising. Some novel approaches to staying cool are misting fans, eating flavored shaved ice (watch out for your sugar intake though!), cooling devices (chillow pillow, hot girl pearls) or even remote car starters to cool your car off before you get in it.
After I woke and completed my morning inventory this soft Irish day, I let the Wheatens out for their morning pee, took care of that myself, and then brushed the sleep and the garlic of last night’s Caesar salad from my teeth. It’s a fairly routine thing we do – brushing our teeth – and then again, it isn’t.
Fine and gross motor skills, fatigue, spasm, swallowing issues, even medications can all have an impact on our daily oral hygiene routines and overall dental health with MS.
I know that I don’t brush the way I once did. I don’t floss the same. I don’t even use the same oral hygiene products of my pre- (and early) MS days.
When my fine motor skills take a hit, holding the brush, manipulating floss, even squeezing the tube of toothpaste can seem like failing some dental sobriety test.
Fatigue can make even getting to the loo for a pee seem like a Herculean task. Brushing, flossing, scraping, polishing, rinsing… Yeah, that’s not happening on one of those days.
And what about swallowing issues? Some recommend that people with swallowing problems not use fluoride toothpastes due to long-term ingestion dangers.
Medications can cause excessive dry mouth that can rot teeth. Mobility and transportation concerns may make getting to the dentist low on the priority list. Trigeminal pain caused by MS can make the thought of putting something like floss or toothbrush into our mouth a fret of a whole other kind.
We may not think of how our MS could be affecting our oral health, but a decade-old study published by the Multiple Sclerosis Trust shows that it is a concern, that we do have problems, and that we should consider our oral health more closely.
When’s the last time you visited the dentist? Do you have issues performing routine oral hygiene? What barriers (or potential problems) to proper oral health do you find in multiple sclerosis?
Have a great weekend and let’s try to keep those toothbrushes out of our eyes, shall we?
received a color brochure in my email from Stem Genex® asking me to locate
subjects with worsening Multiple Sclerosis to participate in their study listed
in www.clinicaltrials.gov under Multiple
Sclerosis. I am familiar with this
company as I researched it for some folks 4 years ago and again each of the
There is no company funding for this and it is entirely patient funded to the tune of
$12,000-$14,000 per treatment with at least two treatments recommended 6 months
to a year apart. There are only two
locations in the United States that do this procedure and staff is sent to
Spain to be trained.
procedure involves you flying to the location of the therapy, staying in a
motel overnight, coming to the clinic the following morning to have blood drawn
from your arm and a two incision (potentially more if you are very thin) “mini
liposuction” on your abdomen. The cells
then from the abdomen are spun out, mixed with your blood and given back to you
in a saline IV over the course of a couple of hours. You spend another night in the motel and if
there are no problems, may fly home in the morning. Airfare and motel is your expense. The “kit” to do this is available online for
$2500 and costs you, at the clinic, $12,000.
know of three people who paid this money, had the procedure done and are worse
a year later than they were when they went for the procedure. There are, of course all sorts of people the
company will put on the phone with you to tell you they had it done, had not
walked in years and are doing everything unaided now.
got onto www.clinicaltrials.gov because it is a “study” and,
as such, qualifies for free advertising in this venue. They are using it to reach as many desperate
People with Multiple Sclerosis as they can to sell this treatment to and will
then agree to follow up and provide the clinicaltrials.gov people with study
procedure may have benefits BUT a legitimate clinical trial will pay for all
treatment costs and most will compensate for time and travel See next page for listing of trial ,
inclusion criteria, contact person, etc.
MS Views and News at Request of Stuart Schlossman 7/14/14
Change from Baseline on the Multiple Sclerosis Quality of
Life Inventory (MSQLI) at 12 months [ Time Frame: Baseline, 12 months ] [
Designated as safety issue: No ]Primary Outcome Measures:
Estimated Enrollment: 100
Study Start Date: May 2014
Estimated Primary Completion Date: May 2017 (Final data collection date
for primary outcome measure)
Ages Eligible for Study: 18
Years to 65 Years
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Sampling Method: Non-Probability
Subjects scheduled for a stem cell/SVF
Subjects diagnosed with some form of
Subjects between the ages of 18 and 65
Subjects willing and able to sign
Subjects willing and able to perform
follow up interviews and surveys
Subjects for whom baseline data is not
Subjects with additional major health
Subjects that are pregnant or
Choosing to participate in a study is an important personal
decision. Talk with your doctor and family members or friends about deciding to
join a study. To learn more about this study, you or your doctor may contact
the study research staff using the Contacts provided below. For general
information, see Learn About Clinical Studies.
Please refer to this study by its ClinicalTrials.gov
Contact: Dawn Thorpe 800-609-7795
United States, California
La Jolla, California, United States,
Contact: Dawn Thorpe 800-609-7795
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