MONDAY MAN: Muscle condition not keeping Winston down

Bodybuilding was one of his favourite pastimes. Double that with cycling and Winston Browne was an active man. However, myasthenia gravis has curtailed his passion for pumping iron at the gym and taking long rides.

Twenty-two years ago, while in his early 30s, Winston realised he was feeling very low on energy, despite taking supplements.  For three weeks he tried to figure out what was happening; the double vision and lethargy were all too strange. When his eyes started drooping he knew for certain it was something he could not ignore. “At first I was saying that maybe my body needed some rest,” he said, shrugging.

However, acting on the advice of a friend who realised his eye looked droopy he paid the doctor a visit. Two weeks of observation at the Queen Elizabeth Hospital led to the diagnosis of myasthenia gravis, a rare long-term condition that causes certain muscles in the body to become weak. “I went to the doctor who sent me straight to the hospital. At first the doctor did not know what it was, so they ran some tests and did observations and that was when my life changed,” Winston said.

The disease most commonly affects muscles that control eye and eyelid movement, with a drooping eyelid a notable symptom along with blurred or double vision. Other common muscle groups that are affected make it difficult for sufferers to chew, swallow, smile, shrug, lift arms up, grip, rise to stand, or walk up stairs. In some cases the muscles necessary for breathing are affected and can threaten life.

Thankfully, in Winston’s case, only his eyes have been affected, but the majority of myasthenia gravis sufferers go on to develop weakness in other muscle groups within one or two years. The possibility that a muscle in another part of his body could be attacked by the autoimmune condition is always at the forefront of Winston’s mind. However, he is quick to say that he tries not to let it bother him. “I do what I can do now, tomorrow I cannot control so I relax,” he said.  “There are some people who have it and they cannot walk properly, some complain that they cannot even plait their own hair, they need someone to do it for them but I can still move around, I can still work,” Winston said.

Another effect of the condition is that if the sun is really hot, sufferers get really tired and may suddenly want to just lie down and rest. While he sticks to his medication regimen, Winston said that sometimes he experiences double vision. He finds it difficult to hold his hands in the air for a long time because his shoulders would feel weak, but he is doing fine otherwise. To make up for the loss of his more strenuous pastimes, Winston has taken up other hobbies that are not as energy draining as bodybuilding. “The doctor said we are not allowed to exercise due to the fact that it is a muscle condition and strenuous physical activity is ruled out.But I do a lot of walking,” he said. He has a wide collection of fishing rods and goes fishing as often as he can. In addition Winston has rabbits, chickens and cows to keep him busy. “I try to get up on morning early and get that done before the sun rises because if it gets too hot, I will not get it done.

The latest I am outside tending to the cows is at 7 o’clock,” said the chef at Royal Pavilion Hotel. Winston said he mostly worked the night shift since it was easier on his body. Physically he is still strong, so his family has had to make very few adjustments to accommodate him. His only challenge is that he has to rest a lot. As a member of the Myasthenia Gravis Association of Barbados for the past 18 years, he is working to raise awareness of the condition. He said he was thankful to learn that it is not hereditary considering that he is the father of two children.

Additionally he said that after he realised that there was no cure, being a member of the association helped him to cope. “To accept that it is a daily thing that I have to live was important. To let it get to me would stress me out and do more harm than good. “As long as you are alive, things will happen so I have learned to accept. If you do not accept it will send you crazy, especially if you continue to think and ask ‘why me?’,” Winston said.

A parting word of advice he gave is not to ignore changes in the body. “Do not self-medicate, get help from a doctor and do the necessary tests because your life could depend on it,” he said.

lisaking@nationnews.com