Illness Spotlight Friday

Today the illness that I have decided to write about is an illness that touches close to my heart.  It is the disease that my father has suffered with for 20 years.  It is Multiple Sclerosis or MS.  This disease has made my father’s life very difficult and has made him disabled over the years.  He is now in a wheelchair full-time and dependent on many people daily.  It doesn’t start out that way but MS is just like the name says, multiple.  Different to everyone.

According to the National Multiple Sclerosis Society, MS is:

“Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. In multiple sclerosis, damage to the myelin in the central nervous system (CNS) — and to the nerve fibers themselves — interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body.

The causes for someone to get MS is hard to say.  Some say there is no one reason a person gets MS and others point to environmental reasons to be stricken with this disease.  Some claim MS is known to occur more frequently in areas that are farther from the equator. Those who study disease patterns looking at variations in geography, demographics (age, gender and ethnic background), genetics, infectious causes and migration patterns in an effort to understand why. Certain studies have shown that people born in an area with a high risk of MS who then move to an area with a lower risk before the age of 15 assume the risk of their new area. Such data suggest that exposure to some environmental agent before puberty may predispose a person to develop MS later on. My father is 1) male and most females are affected, 2) was in his 50’s when he got it.  Most are in their 30’s and 3) didn’t move to a high risk area until his late 40’s.  So why did my father get it?  No one seems to have the answer to that question.

There are four different kinds of MS that are laid out here:

  • Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbation, when new symptoms appear
  • Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point
  • Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions
  • Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery

My father’s type is the Primary-Progressive MS.  He is slowly getting worse over the years and has no relapses or remissions.

There is no cure for Multiple Sclerosis as of today.  Managing MS is an ongoing process, beginning with the very first symptoms and continuing throughout the disease course. It’s never too soon or too late to think about how to access high quality of care.  Knowing what to look for, where to find it, and how to work effectively with your doctor and other health professionals is essential to your health, wellness and quality of life. My father went for a while and was able to walk, with a help of a cane, and didn’t  need as much help as he needs now. Now he is in the wheelchair 100% of the time and needs assistance with everything from dressing to picking up anything to getting out of and into bed everyday. As of right now, he has more issues with bladder infections than he does with the MS.  The bladder infections are a symptom of the MS.Many times he has ended up in the hospital for the infections due to how weak he becomes and how sick he is.  Many a time, after spending   a few days in the hospital, he spends a few weeks in a rehab to help build up his strength. He has had to do that twice and he was there about 3 weeks both times.

As of right now, my father doesn’t take medications for the MS, directly.  He takes some medications to help with some of the symptoms of MS, like he takes Zanaflex for the leg-jerks he gets all the time.  The leg-jerks are a form of  spasticity that many suffer with, when having MS. Others take medicines for the following issues that occur with MS:

  1. Bladder problems
  2. Emotional
  3. Fatigue
  4. Itching
  5. Pain
  6. Spasticity
  7. Depression
  8. Tremors
  9. Walking difficulties
  10. Dizziness

Since this disease is a bit of a mystery, a lot of areas have to be covered when treating the symptoms. At the beginning of my father’ disease, to try to put him into a remission state so he wouldn’t get worse, my father started out with getting a shot once a week to help with the MS.  He was on a medication called Avonex. According to the National MS Society Avonex is:

“Avonex® is a medication manufactured by a biotechnological process from one of the naturally occurring interferons (a type of protein). It is made up of exactly the same amino acids (major components of proteins) as the interferon beta found in the human body. In controlled clinical trials in relapsing MS, those taking the medication had a reduced risk of disability progression, experienced fewer exacerbation, and showed a reduction in number and size of active lesions in the brain (as shown on MRI) when compared with the group taking a placebo. In a subsequent study of patients who had experienced a single demyelinating event in the optic nerve, spinal cord, or brainstem, and had lesions typical of MS on brain MRI, Avonex significantly delayed the time to a second exacerbation, and thus to a clinically definite diagnosis of MS.”

Here is the list of medicines that are used to help slow down MS.  There are three different way to take it and if you click on the name of the medicine, it will take you to information about it.

Unfortunately, taking any of these medicines do not guarantee slowing down the disease and if it does, no one knows how long it will.

Multiple Sclerosis is such a hard disease to live with and to watch someone you love suffer from it.  The good news is that even in the 20 years that my father has had it, science has come a long way.  Hopefully one day very soon there will be a cure for it and no one will have to suffer any more from Multiple Sclerosis.

 

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