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?