Last updated: August 2021
I began having problems in my hands at the age of 10. I was unable to write more than a few sentences, keep time to music, complete an eye test, or do anything that required repetitive movement.
By the age of 26, shortly after the birth of my second child, my legs giving began giving out. I experienced breathing problems and complete exhaustion. At times my head would just drop down like I was sleeping. At this time I was told it was more than likely multiple sclerosis (MS). At the age of 31, one year after the birth of my third child, the shaking and tremors started, among the other things.
I was diagnosed with Parkinson’s and placed on medication. After a few doses, I had a bad reaction and was then told it was not Parkinson’s. The doctors determined I needed controversial brain surgery so they could find out what was going on... that did not happen!
At the age of 39, the symptoms started getting so bad that I was on short-term disability at work. I needed a wheelchair and a neck brace. The doctor ordered changing job positions. I found new employment and worked for 1 year before having everything hit again.
This time my eyelids were sagging, I had double vision, and I was still told I had MS. I had to go on Social Security Disability in 2005. I was unable to feed myself, swallow, chew, use my limbs, or breathe. I lacked bladder control and could not tolerate the heat.
I eventually returned to work. I practiced for several years as a Licensed Massage Therapist until I could no longer keep up. I then worked as a part-time advocate at our local crisis center for 6 years. I had very few symptoms. I still could not write, symptoms got worse if I overdid it, but not to the point where they were debilitating again.
Things started to become more frequent and I needed more rest to get through the days. Co-workers started commenting about my funky eyes, usually in the late morning or early afternoons. After a big flare, the neurologist I had already been seeing finally started me on Mestinon for myasthenia gravis. He also ordered blood tests that all came back negative, as have the repetitive & single fiber EMG tests. I have a swallow study showing swallowing problems, as well as a pulmonary function test.
Although I still have 2 active brain lesions that are consistent with MS, degenerative discs, and arthritis in my spine, as well as a Chiari malformation, I have had a full life. I have adjusted because of symptoms but enjoying life despite them.
I have a wonderful husband, who has stuck with me. I have 3 children, 1 stepson, and 11 wonderful grandchildren. These are by far the most important things in my life!! I am very well cared for. I am the “fun grandma”, or that is what my grandchildren say! Never a dull moment when we are together.
Our farm of chicken, rabbits, the pond to fish, 20 acres of trees & trails for walking, 4-wheeling, and dirt bikes keep them all busy. I do not have to do a thing!! And if that’s not enough Grandma always has crafts, cookbooks and messes clean up!
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