MS and Other Health Risks

You’d think having MS was enough. Unfortunately, multiple sclerosis brings with it a unique set of challenges, including a higher risk of certain other health issues.

MS is thought to be an autoimmune disease and progressive neurodegenerative condition. It affects the nervous system, which gradually impacts the whole body. When someone has MS, their body’s immune system slowly attacks its own myelin sheath, which is composed of the cells that surround and protect the nervous system including the spinal cord and brain. When these cells are damaged, the nerves are exposed, and the brain has difficulty sending signals to the rest of the body.

The disconnection between the brain and the organs, muscles, tissues, and cells served by the damaged nerves causes many of the classic MS symptoms, such as dizziness, vertigo, confusion, cognitive issues, trouble with coordination, and mobility issues.

MS can affect your vision.

·         Vision problems are often the first sign that something is wrong for many people with MS. Double vision, blurriness, pain, and problems seeing contrast can begin suddenly and affect one or both eyes. In many cases, vision problems are temporary or self-limiting, and likely result from nerve inflammation or fatigue of the eye muscles.

MS can affect your limbs.

·         Many people with MS experience a wide variety of symptoms that affect their limbs. Damage to the myelin sheath often results in pain, tingling, and numbness of the arms and legs. Problems with hand-eye coordination, muscle weakness, balance, and gait may occur when the brain has trouble sending signals to the nerves and muscles. These problems may start slowly and worsen as nerve damage progresses. Many people with MS first feel “pins and needles” and have difficulty with coordination or fine motor skills. As the condition worsens, limb control and ease of walking may become disrupted. In these cases, canes, wheelchairs, and other assistive technologies can aid in muscle control and strength.

MS can affect heart health.

·         People with MS appear to be at increased risk of heart disease, congestive heart failure, stroke, and peripheral vascular disease. To lower your risk, it's vital that you stay active and exercise, even if you're in a wheelchair, to keep your heart and blood pumping throughout your body.

MS increases the risk for blood clots.

·         Deep vein thrombosis (DVT) is the formation of a blood clot in one of the deep veins of your body, typically a leg. It’s particularly dangerous if the clot breaks loose and travels to a lung. Immobility, spasticity, and use of steroids are associated with a higher risk of DVT.

·         To prevent blood clots in your legs, avoid sitting or lying in one position for prolonged periods, and take short walks a few times a day. If you cannot walk, consider doing leg-strengthening exercises, modified as needed, to keep the blood flowing in your legs.

It’s hard enough having MS but it’s even harder to cope with MS when you have additional chronic health conditions or “comorbidities” - the simultaneous presence of two chronic diseases or conditions in a patient.

While you may rely on your neurologist for MS treatment, it’s essential that you assemble an entire health care team to manage your MS and comorbidities. It takes teamwork to keep you out of the hospital.

Accessible? (PART 2)

See part 1 here.

I found myself in the ER again last week. Due to a problem discovered in a routine clinic visit, I needed to be admitted to the hospital for a procedure the next morning. Unfortunately, I had to go through the ER process to wait for a bed in the hospital.

As one hour turned to two, I found I needed to use the restroom, desperately. But they didn’t have the ability to transfer me. The Hoyer lift they had wouldn’t fit in the restroom. (A Hoyer Lift allows a person to be lifted and transferred with a sling for those whose mobility is limited.) Then a doctor suggested I get into bed and use a bedpan. Not ideal, but a solution nonetheless. When they found a bed for me, a RN looked at me like, “OK, get into bed.” I told him I needed a lift to transfer me from my wheelchair to the bed. He asked, “Can’t you just stand and pivot…?” I heard “Can’t you just…?” quite a few times that day. Umm, no dude, I can’t. He sighed and said he’d have to find the lift. Once they found the lift, no one really knew how to use it. My husband had to show them what to do.

My ER visit was unacceptable. I was made to feel less than because of my disability. The Americans with Disabilities Act (ADA) guarantees full and equal access to health care services and facilities. This includes the requirement that employees are trained on proper patient handling techniques, operation of accessibility equipment, and how to assist with transfers and positioning of individuals with disabilities. The requirement is to provide equal medical services to a patient with a disability. Purchasing accessible medical equipment will not provide equal access if no one knows how to operate it. Staff must also know which examination and procedure rooms are accessible and where portable accessible medical equipment is stored. New staff should receive training as soon as they come on the job and all staff should undergo periodic refresher training during each year

People with disabilities had to create a civil rights movement in order to achieve visibility and legal standing. But the reality is that the ADA is an imperfect tool. The good news is that the ADA brought change and opened the door to creating new public attitudes. The not-so-good news is that we still have a long way to go.