Thursday, March 23, 2017

Spring Cleaning Your Emotional Health

Over time, houses can become messy and cluttered. Heavy drapes keep out winter drafts, but block the cleansing light of the sun. As springtime breezes over the windowsill, cobwebs flutter in the corners. Until light illuminates the cobwebs and dust bunnies, they are too easy to ignore, allowing them grow into a fierce filament army.

In the past, I have described my own depression as a monster that hides in the corners. Most of the time small and miniature, the monster can be easily ignored. But allow it to grow unnoticed in the darkness and the mini-monster becomes a beast straining to break free from imaginary chains.

Dealing with emotions is not as easy and straight forward as spring cleaning. But I’ve found that if I acknowledge the emotions, really take the time and mindfulness to notice that they are there, the negative emotions lose some of their potency while the positive emotions gain strength. Shedding light on the emotions helps to know where to mentally sweep, as long as you do not “sweep” the emotions under your cognitive rug.

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Cleaning Out The Emotional Clutter Of MS

Monday, March 20, 2017

Meet Jessica P in #RealMSProfiles

“Continue to plan your future regardless of MS.” — Jessica P., @JesswithMS

HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?

Jessica: I made the decision not to further my education. I am only able to work so many hours a week due to MS and the permanent damage it has caused. MS has been a huge financial burden to our family [so] I chose my children's future over my own. I’m also unable to participate in every school event or sporting events. Heat and cold intolerance make it hard, as well as the overwhelming fatigue.

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#RealMSProfiles: JessicaP

Friday, March 17, 2017

Meet Krystina E in #RealMSProfiles

“Find joy and peace in the small things. Your spirit still needs to be nourished.” — Krystina E., RunningToStayAlive (Instagram)

HC: Have your goals changed since you’ve been living with MS? If so, how?

Krystina: Yes they have. I was planning on going into nursing. With cog fog, shaky hands, and now a wheelchair, that's no longer a good option. Instead, I'm working toward a career in software development.

HC: What words of advice do you have for others in managing day-to-day life with MS?

Krystina: Get a doctor, get on medication, and stay on it. A lack of insurance has made me progress really fast. Also try to find joy and peace in the small things. Your spirit still needs to be nourished.

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#RealMSProfiles: KrystinaE

Wednesday, March 15, 2017

Meet Bobbie G in #RealMSProfiles

“My biggest joy with multiple sclerosis is learning how to allow life to be life on life's terms.” — Bobbie G.

HC: How has MS impacted your life?

Bobbie: At first, I was extremely scared. For the first year of my diagnosis every ache, every pain, every sadness, I attributed to MS. The only person I knew with MS was an uncle who was bedridden and dying. So to me, MS meant a death sentence. But then, over the past six months or so, I lost four relatives to different illnesses and sudden deaths. That has really opened my eyes to living for the moment, with or without MS. Now, I’m on a really good disease-modifying therapy and have a lot of hope in my remission.

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#RealMSProfiles: BobbieG

Monday, March 13, 2017

Flying With A Motorized Wheelchair: An Interview

Traveling with a disability can be difficult at times, but traveling with a motorized wheelchair presents special challenges. I learned more about those challenges when I accompanied my good friend Karen on a trip last summer.

Karen lives with primary progressive multiple sclerosis (PPMS) and uses a motorized wheelchair to get around. She was headed to an MS event in Chicago to discuss an upcoming MS medication, and I accompanied her to provide assistance in the airports and to ensure safety in the hotel.

This was my first time traveling with such complex equipment and the experience was truly eye-opening as there was nothing simple about the process. I’ve asked Karen to share what she has learned about flying with a motorized wheelchair as she travels the country as a patient advocate.

Lisa: Karen, how long have you lived with MS and what kind of wheelchair do you use?

Karen: I was diagnosed with MS in February 1996, but distinctly remember symptoms in August 1994. My wheelchair is a Permobil M300 with the capability to recline, tilt, and raise up. It weighs 345 pounds, has headlights and taillights, and can go about 6 miles per hour. I use the chair because of bilateral weakness of my lower extremities and extremely poor balance, which combined seriously limit my ability to walk. The wheelchair gives me freedom and allows me to maintain my independence.

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Traveling By Air With A Motorized Wheelchair

Friday, March 10, 2017

Don't Cross The Line: Accessible Parking and Common Courtesy

According to the ADA National Network, the minimum width of accessible spaces is 8 feet, while van-accessible spaces should be 11-feet-wide. Access aisles are 5-feet-wide and can be shared between two spaces to provide extra room for the deployment of vehicle-mounted wheelchair lifts or the unloading of wheelchairs, walkers, or other mobility devices. An alternate design allows a van-accessible space to be 8-feet-wide IF the adjacent access aisle is also 8-feet-wide.

Do NOT park on the hatch marks

Karen, a friend of mine who uses a motorized wheelchair, drives an accessible van. With a push on her key fob, the side door of her van opens, and a metal ramp unfolds. To maneuver in and out of her van, she needs the extra “hatch space” to use the ramp. Too often she will carefully park within the boundaries of a van-accessible parking space to later return and find that someone else has carelessly parked in the access aisle.

When this happens Karen has limited actions. She can go into the nearest business and try to find the driver of the offending vehicle and ask him/her to kindly move their car. She can call the police to help her move her van to an area with enough room that she can safely access the ramp. Or, if she is not alone, she can rely upon a friend to move her van. That’s what happened when we recently met for dinner at a local restaurant. Someone had parked over the hatch marks, which prevented her from being able to maneuver onto her ramp to get in her van. It was very frustrating, but I’m glad that we were nearby to help.

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How NOT to Park in the Handicapped Space

Wednesday, March 8, 2017

When To Get A Disabled Parking Placard

Handicapped parking is one of the more controversial issues in the multiple sclerosis (MS) community. Many people have mixed feelings about the need to park in designated parking spaces that offer some level of increased access to public and private facilities. The social stigma and lack of understanding from others can make the decision to obtain a disabled parking permit a difficult one.

While I’ve never been subject to insensitive comments — “but you don’t LOOK disabled” or “you really shouldn’t be parking there” — I do remember considering whether getting a permit might be a good idea or not. I had only been diagnosed with MS for about one year and was managing my limitations well, but I knew that it would be easier to get around if I had one.

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Why Should You Get a Disabled Parking Placard?

Monday, March 6, 2017

Vestibular Therapy and Multiple Sclerosis

People with multiple sclerosis (MS) have special needs when it comes to physical rehabilitation. Physical therapists who specialize in neurological disorders have the training, skills, and equipment to better assess patient needs and to recommend therapies to help address specific deficiencies. My own neurophysical therapist has been great at helping me to improve balance and strength.

In addition to issues stemming from muscle weakness, lack of coordination, spasticity, or deconditioning, people with MS may experience problems with dizziness, vertigo, lack of proprioception (awareness of body position in space), or impaired vestibular function (affecting spatial orientation and sense of balance). A special form of rehabilitation that can help with dizziness and vertigo is called vestibular rehabilitation therapy.

What is vestibular rehabilitation therapy?

Vestibular rehabilitation therapy (VRT), or vestibular retraining, is an exercise-based treatment program designed to improve your brain’s ability to adapt to vestibular problems and to use other senses to accommodate for deficiencies. The goals of VRT are 1) to enhance gaze stability, 2) to enhance postural stability, 3) to improve vertigo, and 4) to improve activities of daily living.

Key exercises for VRT involve head-eye movements combined with various body postures and activities, and performed maintaining balance with a reduced support base while using various orientations of the head and trunk. These exercises may be performed while conducting various upper-extremity tasks, repeating the movements that provoke vertigo, and exposing patients gradually to various sensory and motor environments that typically cause disorientation.

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What is Vestibular Rehabilitation Therapy?

Wednesday, March 1, 2017

MS Diagnosed As Carpal Tunnel Syndrome

Distinguishing between the symptoms of multiple sclerosis (MS) and those of other conditions can be difficult at times. One year after I was diagnosed with MS, I began to experience problems with both of my hands. They became clumsy, painful, stiff, tingly, and numb, while my forearms were painful. I initially suspected MS because symptoms that had led to my eventual MS diagnosis included weakness and numbness in my left arm, hand, and last two fingers.

But this presumed MS attack was somewhat different. It affected both hands and caused pain in my fingertips that made touching anything — like piano keys or a computer keyboard — excruciatingly painful. I was dropping things and couldn’t continue to do the things I loved and needed to do.

My neurologist examined me carefully. He checked my strength, coordination, and reflexes. He flicked my middle fingernails looking for the Hoffmann reflex. He tapped the area over my wrists (Tinel’s test) and had me hold my hands in a reverse prayer position (Phalen) to see if either maneuver elicited additional tingling or numbness in my fingers. None of these tests are definitive, but they can be helpful in diagnosing carpal tunnel syndrome (CTS).

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Weakness, Numbness, and Tingling in My Hands: Is It MS or Carpal Tunnel Syndrome?

Monday, February 27, 2017

Dizziness and Multiple Sclerosis

Being diagnosed with multiple sclerosis (MS) is enough to make your head spin. The amount of information available regarding MS and its symptoms is downright dizzying. But MS doesn’t just figuratively turn your world topsy-turvy, it can literally make things unsteady and disorienting.

Dizziness is a common symptom that affects approximately 20 to 30 percent of people in the general population. The term dizziness is a bit vague, but it basically means a feeling of disequilibrium. One particular subtype of dizziness that can affect people with MS is vertigo — a sensation that you or the world around you is spinning or balanced on a tilted axis.

Central vertigo, caused by disease of or damage to the central nervous system, is responsible for almost one-fourth of cases of dizziness reported by all patients. The most common central causes of dizziness and vertigo are cerebrovascular disorders related to blood circulation in the brain, migraine, multiple sclerosis, tumors in the brain stem or cerebellum, neurodegenerative disorders, some medications, and psychiatric disorders.

Dizziness in MS may be caused by nystagmus, eye movement disorders, vestibular problems, or lesions on certain parts of the brain or cranial nerves. According to a 2013 study published in the journal Multiple Sclerosis and Related Disorders, dizziness affects more than 70 percent of people with MS. Prior studies suggested that dizziness affects 49 to 59 percent of people with MS.

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What Can Cause Dizziness in MS?

Monday, February 20, 2017

Why Do My Legs Hurt?

People living with MS can experience different types of pain in the limbs (legs or arms), the most common of which are neuropathic or musculoskeletal in origin. Neuropathic pain in MS is frequently caused by lesions in the spinal cord and is characterized by sensory changes. Spinal cord lesions may also cause muscle weakness, spasticity, ataxia, or other gait disturbances, each of which can lead to musculoskeletal problems.

Do you experience burning, itching, numbness, tingling, stabbing, or the sensation of bug bites in your legs? These are examples of paresthesia, a form of neuropathic pain, and are often experienced by people with MS. A particularly strange sensation is the feeling of water dripping on or down the leg, which is an example of dysesthesia. Other dysesthesias involve the abnormal interpretation of sensation, hypersensitivity to touch, or a tight banding sensation.

Neuropathic pain and sensory changes are often treated with anti-seizure medications, such as gabapentin, pregabalin, carbamazepine, tizanidine, or clonazepam, and certain antidepressants.

For me, spasticity is a significant source of musculoskeletal pain in the legs. Other causes of MS-related musculoskeletal pain include poor posture, inefficient walking (gait), physical inactivity, muscle deconditioning (being out of shape), and muscle fatigue or weakness.

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Why Does MS Make My Legs Hurt?

Tuesday, February 14, 2017

What is optic neuritis?

Optic neuritis (ON) is an inflammation of the optic nerve, a bundle of fibers that transmits visual information from your eye to your brain. Symptoms of ON are varied, often including pain behind the eye and different degrees of vision loss. People with ON may experience blurry vision, blind spots, a graying out of vision, or dull colors. ON can, but does not always, result in temporary blindness and usually affects only one eye at a time. ON may be accompanied by flashes of light or new floaters which should be reported to your eye doctor and/or neurologist.

What causes optic neuritis?

Common causes of optic neuritis include demyelinating diseases, such as multiple sclerosis (MS) or neuromyelitis optica spectrum disorder (NMOSD, formerly known as neuromyelitis optica or Devic’s disease). In MS and NMOSD, the immune system attacks the myelin surrounding nerve fibers of the brain, optic nerves, or spinal cord resulting in inflammation and/or lesions that disrupt nerve signals to and from the brain. If NMOSD is suspected, a blood test can help distinguish it from MS and facilitate diagnosis.

Other causes of optic neuritis may include bacterial or viral infections (e.g., Lyme disease, cat-scratch fever, syphilis, measles, mumps, herpes), other autoimmune diseases (e.g., sarcoidosis, lupus), or drug side-effects (e.g., quinine, some antibiotics), according to the Mayo Clinic.

When I had the blinding case of optic neuritis in 2000, the results of my MRI showed inflammation of the optic nerve but no lesions.

I was not diagnosed with “post-infectious optic neuritis.” I had had a severe cold during the prior weeks. The MRI helped to eliminate the other potential diagnosis suggested, which was brain tumor. Fortunately, I did not have a brain tumor.

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MS Signs & Symptoms: Optic Neuritis

Friday, February 10, 2017

What is Hypogeusia?

The senses of smell and taste are closely related. Working together they can both alert us to dangers and enhance our enjoyment or dislike of certain foods. Our tongues are covered in thousands of little bumps called taste buds. These taste buds contain receptors that allow us to perceive five elements of taste: sweet, sour, salty, bitter, and savory.

A reduced ability to taste is called hypogeusia. A distortion in taste is called dysgeusia or parageusia. The complete lack of the sense of taste is called ageusia.

There are many things that can alter one’s ability to taste, such as common viral infections, smoking, or certain medications. People with multiple sclerosis (MS) undergoing intravenous steroid treatment for relapse frequently report a temporary “metallic” taste in the mouth. But that’s not the only way that MS might affect taste.

A problem with taste in MS is thought to be rare; but when it does happen, it can seriously impact one’s quality of life. A 2016 study published in the Journal of Neurology reported that taste deficits may be more common in people with MS than previously thought and are associated with MS-related lesions in specific parts of the brain.

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MS Signs & Symptoms: Loss of Taste or Hypogeusia

Sunday, January 29, 2017

What is Hyperosmia?

Walking into the kitchen, I stop to ask, “Who got bananas?” My husband replies, “We don’t have any bananas.” But I distinctly smell bananas and now I want one. “I did have some strawberry and banana yogurt earlier today," he says. "I washed out the container and it’s next to the sink." Aha. That’s what I smell.

Sometimes hyperosmia (an increased sense of smell) drives me batty. The smell might be something quite pleasant, like a banana, or something offensive, like my cat going to the bathroom at the other end of the house. Hyperosmia is one of those weird things I’ve learned to live with. It doesn’t affect me all of the time, but occasionally I seem to have the nose of a bloodhound.

An altered sense of smell can be related to multiple sclerosis (MS), neurologic disorders, or other causes. It’s not something that my neurologist routinely questions me about, but it is something you should mention to your doctor if you experience it.

The incidence of impaired sense of smell in people with MS is variable, with estimates ranging from 15 percent to 38.5 percent in different trials. A recent systematic review of the literature found prevalence reports ranging from 20 percent to 45 percent of the MS population. Discrepancies among research results may be due to different testing methods, small numbers of people in the trials, and differences in trial designs.

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My MS and My Bloodhound Nose

Friday, January 27, 2017

How To Be Your Best Advocate

Build a coordinated health care team

MS is a disease that can directly or indirectly affect almost any area of the body connected through the central nervous system. Your basic health care team will include your primary care physician, specialty doctors (including your neurologist), an MS-certified nurse, and a physical therapist, as well as your caregivers, partner, and/or loved ones.

You should expect members of your health care team to communicate with each other and share relevant information with each other to provide you with the best comprehensive care. This will reduce the chance of conflicting plans of care or over- or under-utilization of resources. During consultations, it’s important that your providers are open to multi-sided discussions where you are encouraged to express personal preferences and they present informed clinical options.

Neurologists and MS nurses who attend annual medical conferences focused on multiple sclerosis, such as CMSC or ECTRIMS, are more likely to be up to date on recent knowledge related to MS. Don’t hesitate to ask your providers how they remain informed as to the latest research and treatment guidelines. By working together you can establish a treatment path guided by clear goals.

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How To Be Your Own Best Advocate

Wednesday, January 25, 2017

MS Advocacy At The State Capitol

The Virginia chapter of the National Multiple Sclerosis Society (NMMS), of which I am a member, led the way for state advocacy across the country in support of policies that will benefit people living with multiple sclerosis (MS) and other chronic diseases, caregivers and their loved ones, and people who don’t have anyone else to speak up on their behalf.

Becoming an advocate is really easy, and you can take action from home by becoming an MS Activist and signing up for federal action alerts from the National MS Society. But there is something special about traveling to your state capitol, visiting the offices of your state legislatures, speaking your concerns, making your voice heard, and witnessing the legislative process in action if you are fortunate enough to sit in on a meeting of your state congress.

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Speaking with Your State Legislators about MS: State Action Day in Virginia

Wednesday, January 18, 2017

Building A Strong Health Care Team

Building a strong health care team begins with YOU as you recruit team members with the skills and expertise to function in a coordinated way to provide you with the best care. As you work in active partnership with your team members — doctors, nurses, therapists, pharmacists, and office staff — it will become easier to identify quality care and to be empowered to communicate your needs, questions, concerns, and personal choices.

Primary care team

As a person living with multiple sclerosis (MS), it’s often easy to think of your neurologist as your primary, or most important, physician. However, you continue to need access to a primary care physician (PCP) who can take a big picture view of your health, while being available for urgent, acute, and chronic needs. For example, you would call your PCP if you suspected a urinary tract infection so that you could be quickly tested and prescribed treatment. Or if you have chronic conditions, such as hypothyroidism or high cholesterol, it is your PCP who monitors your health with routine laboratory testing and prescribes medication to treatment the condition.

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Building Your Best MS Health Care Team

Monday, January 9, 2017

Brrrrr - Cold Temperatures and MS

The start of a New Year is often a bright moment — a chance to look ahead and make grand resolutions and promises to ourselves for the months to come. For me, the new year brings excitement that days will continue to lengthen as the sun sets one minute later each evening. However, the temperatures will also continue to drop and it’s about to feel like winter very soon.

While some people with multiple sclerosis (MS) are heat intolerant and have trouble during the summer, others are sensitive to cold temperatures. Some people, like myself, may be bothered by both extremes as it can become difficult to regulate body temperature due to impaired neural control of autonomic and endocrine functions. The part of the brain that senses core body temperature and regulates it to about 98.6°F can be affected by MS, allowing for atypical fluctuations in body temperature.

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A Wintery Mix: The Effect of Cold Temperatures on MS Symptoms