Friday, September 7, 2018

Don’t Give Up The Ship

"Don't give up the ship" was the dying command of James Lawrence in 1813 aboard the USS Chesapeake. Those words should be the battle cry for all of us living with Kennedy’s Disease, aka Spinal Bulbar Muscular Atrophy.

At times, it is easy to feel defeated. This is especially true after a ‘slide’. When we experience them, the first thought is will I bounce back. The next thought is usually laced with fear. What happens if I do not bounce back?

In my 40+ years of living with Kennedy’s Disease, I have experienced my share of slides. When I was a little younger and more resilient, my slides were steep and my bounces just as dramatic. These last few years, my bounces are not as dramatic and sometimes there is no bounce at all.

A few months back my choking became a daily issue. Almost everything I tried to eat would not go down without a fight. It took me thirty to sixty minutes to eat a meal. Many times, I could not finish a meal because of the choking. I lost more weight and began to research other options for receiving the required nutrition.

These choking episodes went on for a couple of months. It got to a point where I did not want it to be mealtime. Yet, something inside kept telling me to practice my swallowing exercises. Then, during the first week of August, I noticed an improvement. Food was going down easier. I found myself eating more and enjoying my meals again. The last few weeks I discovered I am putting on weight again.

During the ‘bounce back’, I continued to practice what I learned during the choking period. I drink water to help wash food down. I use more gravy and other juices to make it easier to swallow. I limit ‘sticky’ foods like bread that have crumbs and are more difficult to swallow. And, most importantly, I now practice my swallowing exercises at least three times a day.

Once again I learned no to give up the ship without a fight!

P.S. Want to learn more about the Captain Lawrence and the battle? [Click on this link]

"...During the War of 1812, Captain James Lawrence, commanding the 49-gun frigate U.S.S. Chesapeake, was attacked off Boston Harbor by the British ship H.M.S. Shannon.

In less than 15 minutes, Lawrence's crew was overwhelmed. Mortally wounded, Lawrence shouted, "Tell the men to fire faster and not to give up the ship; fight her till she sinks!" ..."

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