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Laying Down on the Job

I was once accused of laying down on the job. The accusation should have cut me to the quick instead I snickered.


I was once accused (this time erroneously) of having had more than my fair share of Shiraz. Instead of laughing, I argued vehemently that it was not alcohol that felled me.



I was once accused of being a healthy young woman. That accusation brought silent tears of rage at the inaccuracy.



I have Multiple Sclerosis until about six years ago, it was a disease that most people could not even tell I had. Now, as I walk with a shuffle and spend far more time resting, the secret is out.


MS is a disease that affects nearly 500,000 people in the United States. More women than men get the disease and it is usually diagnosed between the ages of 20 and 40. MS is a disease of the nervous system and affects each person differently. While researchers contend there is no genetic component (many assert there may be a genetic predisposition), my two sisters have the disease as well. My youngest, Kerri, was diagnosed in her early 20s and currently relies on her wheelchair to get around. My oldest sister, Kelli, was diagnosed shortly after her 40th birthday and has occasional episodes of temporary paralysis. I was diagnosed in my 30s, and until recent years had few if any symptoms or relapses.



MS is unpredictable and that is one of the most difficult facets of this life-altering disease. Each person is affected uniquely and how it affects each person can also change over time. When I was in my 30s and early 40s, few people needed to know that I had MS because my symptoms were not obvious I had fatigue (the number one symptom) and occasional bouts with numbness in my outer limbs. However, in my mid-40s all that began to change. Walking has become increasingly more difficult I can no longer take walks on the beach or around the neighborhood with my family and my speech or cognitive ability has become noticeably affected as well. My husband and children live with these changes and have experienced their fair share of disappointments because of the disease. My children wonder what's going to become of their Mom and their Aunts and have occasionally voiced those concerns or the even more disconcerting thoughts that they, too, may one day have to live with this disease.

There are four types' of MS. Eighty five percent of all people are initially diagnosed with a form called relapsing-remitting the most common form that is characterized by acute attacks that can last for a few days or weeks followed by a full recovery or one with minor residual neurological symptoms. A second course of MS is called secondary progressive about 50 percent of all persons initially diagnosed with relapsing remitting become progressive after 10 years. This essentially means that the individual will not recover completely from a relapse and often this is heralded with increasing difficulty walking. Primary progressive, a third course of the disease, is marked by progression from the onset of the disease without any marked improvements this form of MS affects nearly 10 percent of all those diagnosed. The last course is progressive-relapsing affecting nearly 5 percent of MS patients, is noted by a progressive course of the disease with clear acute relapses with little or no recovery after the relapse.

I was told when I was diagnosed 15 years ago this month that a cure was foreseeable in the next five years'. That has not happened though we now have medications that pharmaceutical companies and researchers contend will halt the progression of this disease, if taken within the first few of years of diagnosis. These disease modifying drugs are injected and can include some rather nasty side effects and can cost up to $1,500 a month. The other caveat is that there is no long-term data on the effects of injecting these drugs. There are also prescriptions that we can take to help manage the symptoms I take one for the fatigue and another to manage the depression that is a frequent symptom of the disease and also a side-effect of the disease modifying drugs.

 There are many of us with the disease some are in wheelchairs, using a cane, wobbling along or maybe even running. There is no 'face' of MS. There is no typical course of the disease. The only thing we all have in common, aside from the deterioration of the myelin protecting our nerve fibers, is a level of uncertainty about the future

Comments

  1. Dear Beautiful Kathleen,

    Thank you for shedding light on your journey.
    I can't think of anyone who has handled life's unknowns with the grace and beauty like you have. You are a gift and for that I am most grateful.

    ReplyDelete
  2. I value you in many ways despite the time and distance that separate us. In this moment, I am appreciating your candor as you educate. Great work.

    ReplyDelete
  3. Hello my friend...

    I, too, thank you for sharing this. As I read it, I kept seeing your face and hearing your voice the way I remember it to be. Yes...it may have been over 30 years ago, but I bet it's just the same...full of sincerity, kindness, and seeing the good in all. Oh, what I would give for an evening at the beach with you (and a bottle of Shiraz). Now THAT would be one HECK of a visit. Peace. xoxo

    ReplyDelete

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