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Living with an invisible disease

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POSTED: June 29, 2008 5:00 a.m.

Living with an invisible disease is not easy but it has taught me to be a lot more patient with individuals I see using those power chairs or parking spaces.

I live with a disease called Myasthenia Gravis (MG). It is a chronic autoimmune disease characterized by fluctuating weakness of the voluntary muscles of the body. Symptoms can include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing. The weakness increases with continued activity and can be improved with periods of rest. Everyone is not affected in the same way, and symptoms and severity vary.

These symptoms can appear similar to other diseases and physicians unfamiliar with the disorder may not recognize the characteristics to make an appropriate diagnosis. For this reason, it is probable that the prevalence rate is actually higher than the current estimated 70,000 individuals in the United States.

When I first started having speech problems I panicked. My thoughts went first to meeting up with a law enforcement officer and being accused of being intoxicated. There was no doubt in my mind I was slurring my words. The first time I noticed it was when I was holding a parent meeting for the Girl Scout Troop I was a leader of. I could hear the slurring and I saw the looks on some of the parents and girls faces. I immediately turned the meeting over to my co-leader.

The next visit to my neurologist I told her about the slurred speech and she informed me that was another symptom. The solution is I don’t answer my phone when I don’t have my speech.

I don’t know how long I have had this disease. Childhood pictures show the droopy eyelids which medical books say is one of the first signs. It is hard to imagine I have been living with this disease because I worked as a social worker in South Florida, spent an average of three hours a day at the gym working out and did lots of walking. I do remember falling asleep at doctor appointments and being so fatigued once noon came. Doctors would tell me it was because I didn’t get enough rest. In a way they were right. I was sent to a Rheumatologist who diagnosed me with Lupus and that seemed to explain away all the symptoms I had.

Time went on and in the last semester of my masters degree I found it increasingly difficult to carry my books, stay awake, or breathe. I was told I had asthma and given an inhaler. I was also diagnosed with depression because of the fatigue I was suffering. Now a soon-to-be mental health counselor that was a difficult pill to swallow but I sought out help. I even fell asleep during one of my counseling sessions which just seemed to add to the diagnosis. I had already suffered one heart attack and three strokes for no apparent reason so the doctors told me it was because I not only had Lupus I had Scleraderma, both auto immunde diseases.

I came on vacation to Pembroke, after befriending a resident of this town in Florida. I fell in love with the fact you could sit on a front porch without fear of being shot or having some drug dealer approach. You could even go for walks and be safe. I decided this was where I needed to be. It was a major life change for me since other than being stationed on small military bases I always lived in larger cities such as Boston and Ft. Lauderdale.

After a few weeks of living here I suffered a heart attack followed by a stroke. I thought, 'Great, I finally slow down and my body falls apart.' What I didn’t know was the next two and a half years were going to be a nightmare.

I was assigned a neurologist in Savannah and I had to put my faith in him since I didn’t know any doctors. He sent me to the Memorial Hospital rehab day program. By noon each day or shortly after lunch I would be on the stationary bike and collapse. This doctor basically said I was being lazy. Then he informed the ER doctors at St. Joseph’s I was menopausal and had psychiatric problems. I was furious when I learned of this.

Here I was at home unable to care for myself and would fall at the drop of a hat and this doctor was saying nothing was wrong with me. I spent most of the two and a half years in bed with nurses and aides coming morning and night to care for me. To help me with meals and bathing which I found so humiliating. Some days were good and some days were awful but nobody seemed to understand.

Finally, on one of my trips to the ER I asked to be taken to Candler. Once there I asked for Dr. Julia Mikell, whom I had heard awesome stories about. My guardian angel was looking after me, not only was she on call but she was in the ER. She came to my room and I told her what the other doctor felt was wrong. I told her I knew my body and there is something going on however if she felt I was crazy also I would accept it then.

It took her four days to diagnose me. I remember her coming into the room and saying I have good news and I have bad news. That was I was really sick and not crazy and the name of the disease was Myasthenia Gravis. I had never heard of that and I had worked in the medical field for many years.

By the second visit she admitted me to the hospital. The funny thing was it was one of my better days. With only a limited amount of medications to work with she started me on the traditional Mestinon and Prednisone with little success. She then decided it was time for IVIg infusions which is Intravenous Immunoglobulin. These infusions are given every 30 days for five hours for five consecutive days. Soon my skin was peeling off my hands to a disgusting looking purple. Another doctor stated I was allergic to the IVIg infusions. I remember crying and begging him not to say that just yet. I was now out of my wheelchair and walking six miles a day.

He was right. On my ninth month of treatments I coded, my body had rejected the IVIg infusions. I was horrified. I wanted my body back. It didn’t take long before things started slipping backwards. By November, 2005, I wasn’t able to swallow most of the time. My diet consisted of maybe a teaspoon of mashed potatoes a day. In early December a feeding tube was put into place. I hated it, refused to look at it, and nursing had to come help with the daily feedings and medications. I continued to get worse.

I remember asking God to let me celebrate his birthday. I asked for that one day of health to spend with friends. I got exactly what I wished for, you would have never known I was sick. However, Dec. 26 approached and I seemed weaker than ever. Being very stubborn I refused to call any doctor until after the holidays. I had already decided I wasn’t spending the holidays in the hospital.

My health had deteriorated to the point where I was calling friends to help me do just about everything. I couldn’t even do my own feedings with the tube because I lost use of my hands. Finally, it was January and my neurologist had me come right in. From her office I landed at Candler and was there for almost a month. There was a short break when she discharged me on Friday the 13th but that night I had started backwards again. On the following Sunday morning I fell out of bed and was stuck on the floor for about three hours before someone heard me. The police came and put me in my chair where I vowed to stay till I could contact my doctor. A nurse was sent over that afternoon to help me with medications and nutrition and get clean clothes on. The following day it was back to Candler. I was there for almost a month total. I even thought about changing my address.

I was started on a new medication and taught new ways to dress and bathe and still conserve energy. The new drug finally kicked in after nine months and I finally felt I had some quality of life back.

Now I take every opportunity to educate people about this rare disease. About 20 out of 100.000 people have this disease in the United States. There is little research done on MG due to lack of funds. There are no local support groups because there aren’t enough people with this disease to form a group. I do however belong to an awesome online support group which has taught me so much about the disease. I now speak to those who have been newly diagnosed.

Not all MGers are effected in the same way.

Our symbol is the snowflake because each snowflake is unique; each MG patient has unique symptoms and reactions. Each snowflake is fragile; each MG patient has times of "fragility," or weakness. Each snowflake is beautiful; each MG patient has a special beauty. A group of snowflakes can have the awesome power of a blizzard; a group of MG patients can have awesome power as well - to lift each others’ spirits.

June is National Myasthenia Gravis Awareness and Education Month. For the past two years Mayor Judy Cook has read a proclamation to the City of Pembroke acknowledging MG Month and she will do that once again during the City Council meeting this month.

To learn more about this disease please visit the National Myasthenia Gravis website at www.myasthenia.org.

Some famous people with MG:

Leland Brewsaugh (1935-2003), famous U.S. sculptor, designer, and painter. His artwork can be found at http://brewsaughgallery.com/. Brewsaugh’s elaborate carvings can be found in private collections around the world including the White House.

- Linda Darnell (1921-1965), famous Hollywood actress who starred in more than 30 Fox films.

- David Niven (now deceased), famous actor and writer.

- The late Aristotle Onassis, Greek business tycoon and husband of Jacquiline Bouvier Kennedy.

- Roger Smith, husband of the movie actress Ann-Margret.

- Lamar Lundy, formerly a football player with the Los Angeles Rams.

- Rondell Jones, a defensive back who plays for the Denver Broncos.

- Doris Lilly (1922-1991), author of "How to Marry a Millionaire" and a book on Aristotle Onassis called "Those Famous Greeks." She was also a society and gossip columnist for the New York Post.

- Suzanne Rodgers, actress in "Days of Our Lives" soap opera Ms. Rogers is approaching her 27th anniversary on the soap opera as the character "Maggie Horton" who also has myasthenia gravis.

- The late Phil Silvers (actor who played Sgt. Bilko).

- Noah Deitrich, right hand man for Howard Hughes.

- Weeb Ewbank, former coach of the NY Jets and Baltimore Colts.

- "Sleepy" of Snow White and the Seven Dwarfs, reportedly modeled after a friend of Walt Disney who had MG. (Note the drooping eyelids.)

 

Milloy, a Pembroke resident, is also first vice president of American Legion Auxiliary Unit 164 and a Navy veteran.

 

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