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Understanding Multiple Sclerosis through advances in science, medicine, and a personal perspective


“My cat, China, who I also call Hero, knows
something is going on with me right now that
 is presenting more of a health challenge than
usual, but through faith, I will survive this.”—M.P.

Photo credit: Click here

As a volunteer patient storywriter for a hospital and cancer center, I have the privilege of meeting people who share their experiences about being health challenged. The patients share their innermost and deepest thoughts about the world and their place in it. Listening to and composing the patient’s life story has enabled me to gain a deeper understanding of both life and death. Many patients choose the attitude that they are “living” with a disease rather than “dying” from it. The take-home lesson from each session with a patient is sort of like the same as that in “Tuesdays with Maury;” and that is to learn to live by listening to the sick and dying. There is one woman, Mary P., who stands out in my mind. I visited her in the hospital as she lay weak, and partially immobilized in her bed. She was living with Multiple Sclerosis (MS) for the past 15 years and her symptoms had progressively worsened. Although her body was weak and she could not move much, she was willing and able to chat with me about her life. I can truly say that I have never experienced a more positive and joyful person in my life. She told me she could no longer do the things she loves most in life; and that is to read and write poetry. Her vision is so blurred and compromised along with her other physical capacities but she was beaming from ear to ear as she spoke with me. Her husband is also afflicted with a disease that renders him physically incompetent. In spite of this, she was smiling, eager, and earnest. She did not reveal any unhappiness and it did not appear to be for the sake of social propriety. She clearly had full control of her attitude and perception on life, in spite of her medical malady. I was astonished, humiliated, and truly humbled. In that one session, she reinforced in me the value of belief, insight, and how to live in the moment and treasure life’s experiences. I was elated when I left her and amazed at her ability to transcend the limitations on her body as well as her own pain. Here is her story:

Mary P.
Have Faith

I have a health challenge that I have been dealing with for the past 15 years, but I’m a fighter and can beat this. I am fortunate to be here and have the wonderful family that I have. My cat, China, who I also call Hero, knows something is going on with me right now that is presenting more of a health challenge than usual, but through faith I will survive this.

I have lived in Connecticut all of my life and have been married for almost 3 years to a wonderful man named Frank. I was best friends with his sister, Susan, for 26 years before Frank and I got together. He has 4 beautiful daughters from a previous marriage. I also have a daughter who is pregnant and soon to deliver my second grandchild. I have a 4-year old granddaughter, Haley Love, who is the light of my life! She has very long hair, past her waist, and she reminds me that she wants me to grow my hair to that length, too. She calls me “Nana” and she calls Frank “Poppy.” She is our little angel and watches out for us. She says to my husband sometimes, “Did you test your sugar, Poppy?” “Did you take your insulin, Poppy?” “C’mon, Poppy!” She shows her concern for me as well when she visits us as she will say “Are your legs okay, Nana?” “Can you pick me up today?” Inside and out she loves life! She is our little motivator. I tell her that she can be anything she wants to be as she grows up. She wants to be on American Idol someday and perhaps she will.

My own nana left a big impression on me when I was growing up. The hardest day of my life was when she passed. I was 18 years old. She gave me such deep impressions about life and passed on qualities that I will always cherish. I used to sit at her vanity as a young girl and wear her pearl necklace and put on her lipstick. I wanted to be just like her. Today, Haley Love does similar things with me. She watches me put on my makeup and prepare for the day. She wears my lipstick and she wants me to grow my hair the same length as hers so that we can look like one another.

I have a 4-year old granddaughter,
Haley Love, who is the light of my life!

Illustration credit: Click here

I pray for others all the time but not for myself. It is strengthening to be concerned for the health and welfare of others. Both my husband and I are challenged with health issues, but we see it through together. Knowing that God doesn’t give us anything we cannot handle, we will see this through in a positive light and trust that something good will come from it.

I recall many things that I used to love to do but can no longer do to the same capacity as I once did. For example, I used to love going on family camping trips. I also loved to read and write poetry. Although I can no longer do those things, it does not set me back in my attitude about going ahead with life in a positive manner. I tend to lean more on my faith and use my strengths instead. One of those strengths includes talking to people. I love people and can talk to anyone and knowing that I can make them feel better about their day or their life, gives me a certain joy. So, regardless of the fact that I can no longer do all of the things I once loved, I know that using my special strengths allows others to feel positive about their own life and situations.

I want my family to know how much I love them and appreciate all the things they have been through with me as well as those things they have done for me without ever giving up. My message to them is to stay strong, healthy, and tell the Lord that you trust in Him. Pray for the people you love and for those who have touched your life in some way. Having faith makes me feel whole and I believe the same thing can happen for others. Give your life to God every day and trust in Him. Live for the moment and not for yesterday and have faith that you will see the purpose for the good that you do in life. --M.P./J.E.M.W.

Events that occur in MS.
Destruction of the myelin sheath surrounding nerve cells.

Illustration credit: Joyce E.M. Wall

Multiple Sclerosis (MS) [1][2]
MS is a disease that affects the central nervous system. It disrupts the communication between the brain, spinal cord, and parts of your body because of the damage it does to the myelin sheath (a material that surrounds and protects nerve cells). Some researchers believe MS is an auto-immune disease in which the body’s own immune system attacks itself. It is also thought that this disease may be triggered by an environmental factor, such as a virus.

MS symptoms typically appear between the ages of 20 and 40. The disease is usually mild but some people lose the ability to speak, write, or walk. Presently, there is no cure for MS but medicinal treatments that help control the symptoms and slow its progression include use of beta interferon, a synthetic form of myelin protein (Copaxone), immunosuppressant therapy, steroids and vitamin D. Symptoms include:
•    Visual disturbances
•    Muscle weakness
•    Trouble with coordination and balance
•    Sensations such as numbness, prickling, or "pins and needles"
•    Thinking and memory problems

What is Multiple Sclerosis
Video credit: Click here

Research update [3]
MS is rare in the tropics and more common in the high latitudes of North America and northern parts of Europe. Scientists believe that exposure to UV radiation in equatorial sunlight provides a fair amount of vitamin D, which inhibits the onset of MS. People living in high latitude regions do not get enough sunlight and consequently not enough vitamin D, so they are more likely to develop MS. In previous experiments, giving vitamin D supplements to animals with an MS-like disease required administering harmful amounts of the nutrient. This left scientists with questions and so experimentation was taken further to determine if there is a direct causal relationship between UV radiation and vitamin D.

A report from the Proceedings of the National Academy of Sciences released the results of a recent study done on mice. The data shows that it is not necessarily vitamin D that limits the symptoms of MS, but, rather UV radiation. Scientists induced a condition in mice comparable to human MS by injecting the animals with proteins that damage the myelin sheath of nerve cells. Some of the mice were exposed to UV radiation before and after the injection. Those mice suppressed the effects of MS-like disease better than the control mice (no exposure to UV radiation) even though the amount of radiation wasn’t enough to significantly increase the animals’ blood concentrations of vitamin D. In another test, researchers gave injected mice varying doses of vitamin D supplements, but no UV radiation. The supplements failed to control the onset of the disease, its severity, or progression. Researchers concluded that UV light is doing something beyond making vitamin D and that the risk of developing MS may be influenced by other biological mechanisms that are not associated with blood levels of the vitamin. They are looking into how UV radiation might influence the immune system, how it might inhibit MS, and if its effects are independent of the production of vitamin D.

Scientists have made progress in their attempts to elucidate the biological mechanisms involved in MS, which may lead to a cure for this neurodegenerative disease. Many people think that the mind, body and spirit are connected and that the health of one affects the health of the others. Research has shown that positive beliefs and a strong sense of spiritual faith contribute to a sense of well-being and healing. So, in addition to therapeutics offered through medical science, a positive attitude and spiritual bonding may also be links to preventing illnesses or relieving symptoms, such as those experienced in people living with MS. 

“Live for the moment and not for yesterday and have faith that
you will see the purpose for the good that you do in life.” --M.P.

Reference links:

Copyright ©2010 Joyce E.M. Wall


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