The power of mindset. Dealing with Polymyositis.

Clarke Boozer has been living with a rare muscle disease for over twenty years. At it’s worst, he was in a wheelchair and told he might not reach his next birthday whilst at its best he’s ridden a hundred miles on his bike! He still has good days and bad days and each day when he wakes up, he doesn't know which it’ll be.

Before 2000 Clarke was very active, participating in, and organising sports. Then in 2001 he felt the first signs of the muscle disease. He was in the gym and felt a pain in his shoulder and after that things progressed very quickly. It became difficult to walk, he lost strength and was losing his breath very quickly when he tried to exercise.

He had no idea what was going on. His doctor told him he had tendonitis and bursitis. In the back of his mind Clarke knew that wasn't it. He was working as a family intervention specialist at a public school and one day he fell over and knocked himself out. He went back to the doctor but there was still no clue as to what the problem was. Over the next couple of months things got worse until he had to use a wheelchair.

He went back to see a specialist and at this point he asked if he would ever walk again. The doctor’s response was that walking was the least of his worries. The muscle disease was also affecting his internal organs and unless they worked out exactly what the problem was, he might not make it to his next birthday

Clarke’s initial response was anger. He couldn’t take in what they were telling him. He remembers being driven home and crying because he thought he was about to die. Because it had happened so suddenly he wasn’t prepared for it. At the time his children were 10 and 4, he had a good job and things had been going well. Now, he didn’t know how he was going to support his family.

He was eventually diagnosed with Polymyositis, an inflammation of the major muscles. There was no clue as to what had caused it but it can be related to autoimmune disease. His doctor prescribed high levels of drugs and after a few days the pain went away but he was still so weak he couldn't do anything. Simple things like buttoning a shirt, putting his shoes on and feeding himself were impossible.  

He felt at rock bottom. He was depressed, angry, mad at the world but also helpless. Because the disease had progressed so quickly it was difficult to understand what was happening.  Usually with muscle wasting diseases there is a gradual decline but Clarke was losing lbs each day and as his body was declining, his mind was driving him downward as well.

At the time Clarke didn't really understand how much mindset can affect physical health but an experience he had when he thought he was going to die started to change things around for him. He worked with a therapist on trying to improve his physical health and he went from thinking that his life was over if he couldn't participate in sports or play with his children. One day her just looked at his kids and his mother and realised he had something to live for. This change in mindset led to change in physiology. He started to find things he could do sitting in his wheelchair, initially just trying to lift his arm and then trying to build back strength into his legs. He still had ups and downs but he weighed the positives and negatives and found that talking to other people about his story gave him hope and helped in his recovery.

Clarke feels that mindset is the key and that we can do anything we want if we focus on what we say to ourselves and what we believe. He also thinks having a strong faith helps He has found African Spirituality, meditation and spending time in nature helps him reach his inner self and connect.  His aim now is to get out and help more people going through the same sort of issues he has. He has just completed Instinctive Mediation Teacher Training which he hopes he’ll be able to use and although he is limited as to the type of exercise he can do, he is hopeful that he might be able to undertake the 100 mile Portland Century bicycle ride again as well as continue with his Tai Chi, Qigong, recording music and DJ sets.

You can listen to the podcast in full and find out further information about Clarke here. Our upcoming guest list is also available along with our previous blogs.

You can find out more about Clarke at http:/youtube.com/user/clarkecboo