Life with Multiple Sclerosis ( MS) : World MS Day 2017

Today is World MS Day,  a day recognized on the last Wednesday in May in order to raise awareness of Multiple Sclerosis: the people it impacts and the realities we face. Multiple Sclerosis (MS) is a neurodegenerative, autoimmune disease, that affects 2.3 million people worldwide and has no cure.  Though the number of treatment options is growing,  there is no cure and the majority of treatments do not impact symptoms directly. Every person with MS experiences their own unique set of symptoms and challenges, making treatment plans complicated and individualistic.

Multiple Sclerosis Defined:
 mul·ti·ple scle·ro·sis
ˈməltəpəl ˌskləˈrōsəs/
noun

1. a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.

This year’s World MS Day theme is “Life with MS”. What is life with MS? what does that technical stuff I just wrote really mean? How do those words above translate to the day to day life of someone with the disease?  Honestly? It’s hard to say what ‘Life with MS’ really means.  It’s different for everyone. MS is sometimes referred to as a snowflake disease for that very reason. No one experiences MS in the same way.  Some people never get optic neuritis and others feel plagued by it. It’s individual.

 Symptoms of Multiple Sclerosis (Via The National MS Society) :

• Fatigue – Occurs in about 80% of people, can significantly interfere with the ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.
• Walking (Gait) Difficulties – Related to several factors including weakness, spasticity, loss of balance, sensory deficit and fatigue, and can be helped by physical therapy, assistivetherapy  and medications.
• Numbness or Tingling – Numbness of the face, body, or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed as having MS.
• Spasticity – Refers to feelings of stiffness and a wide range of involuntary muscle spasms; can occur in any limb, but it is much more common in the legs.
• Weakness – Weakness in MS, which results from deconditioning of unused muscles or damage to nerves that stimulate muscles, can be managed with rehabilitation strategies and the use of mobility aids and other assistive devices.
• Vision Problems – The first symptom of MS for many people. Onset of blurred vision, poor contrast or color vision, and pain on eye movement can be frightening — and should be evaluated promptly.
• Dizziness and Vertigo – People with MS may feel off balance or lightheaded, or — much less often — have the sensation that they or their surroundings are spinning (vertigo).
• Bladder Problems – Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully with medications, fluid management, and intermittent self-catheterization.
• Sexual Problems – Very common in the general population including people with MS. Sexual responses can be affected by damage in the central nervous system, as well by symptoms such as fatigue and spasticity, and by psychological factors.
• Bowel Problems – Constipation is a particular concern among people with MS, as is loss of control of the bowels. Bowel issues can typically be managed through diet, adequate fluid intake, physical activity and medication.
• Pain – Pain syndromes are common in MS. In one study, 55% of people with MS had “clinically significant pain” at some time, and almost half had chronic pain.
• Cognitive Changes – Refers to a range of high-level brain functions affected in more than 50% of people with MS, including the ability to process incoming information, learn and remember new information, organize and problem-solve, focus attention and accurately perceive the environment.
• Emotional Changes – Can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.
• Depression – Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.
• Speech Problems – Speech problems, including slurring (dysarthria) and loss of volume (dysphonia) occur in approximately 25-40% of people with MS, particularly later in the disease course and during periods of extreme fatigue. Stuttering is occasionally reported as well.
• Swallowing Problems Swallowing problems — referred to as dysphagia — result from damage to the nerves controlling the many small muscles in the mouth and throat.
• Tremor– or uncontrollable shaking, can occur in various parts of the body because of damaged areas along the complex nerve pathways that are responsible for coordination of movements.
• Seizures – which are the result of abnormal electrical discharges in an injured or scarred area of the brain — have been estimated to occur in 2-5% people with MS, compared to the estimated 3% of the general population.
• Breathing Problems Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles.
• Itching Pruritis (itching) is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing or tearing pains — which may be experienced by people with MS.
• Headache  Although a headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache
• Hearing Loss About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease.

Each of these photos captured a moment where I found myself struggling with symptoms (new, heat inspired, and those that are permanent fixtures in my life) and issues created by multiple sclerosis. These symptoms and struggles are typical to a day in my Life With MS. Everyday brings new and old challenges to the forefront that I stop and deal with and move forward. That is the key.

Tags: Life With MS, Multiple Sclerosis, spoonie, multiple sclerosis awareness, advice, World MS day, Chronic Illness