Woman, 65 years of age with Marfan syndrome
I am a 65-year old woman with Marfan syndrome.
The Marfan syndrome is a genetic disorder of the connective tissues that occurs in many parts of the body including the back and joints. Hypermobility is a frequently occurring symptom.
I was only diagnosed with Marfan when I was a lot older.
I have always had a lot of problems in my back, knee, elbow and neck over the years and I had to go to a physiotherapist regularly for treatment.
I was not usually satisfied with the treatment as I felt that the area where I had the most problems at the time was only being treated. Usually the problem recurred after quite a short period.
I came into contact with Gertie Lenselink at one of the contact days of the Marfan Contact Group. She was passionate when she spoke of her work. What I noticed the most was that she connected pain or discomfort in a specific area of the body with posture or movements affecting a larger part of the body. She was able to explain the connection between all the muscles, joints and tendons. Discomfort in the elbows can, for instance, be caused by problems in the shoulder or neck.
The whole story appealed to me to such an extent that I contacted her and started Bugnet therapy with her.
I like the idea of my body being treated as an entirety in which the various parts have an influence on each other. Muscle chains and plantar fascia travel a long way from the feet and legs to the hips. The back and neck are connected. My incorrect posture, due partly to scoliosis but worsened by poor posture when sitting or standing, caused me to lose my balance easily.
The amount of time I have invested in the therapy is much less than I expected. After initially starting with a couple of times a month, I now go for a check-up now and again. I noticed an obvious improvement after several months.
Gertie made sure I did the exercises properly and then gave me follow-up exercises to do at home. The exercise repertoire has further increased over the years. I can do some of the exercises when it suits me depending on the time and place, when I am sitting at a table for example or in the kitchen waiting for the kettle to boil.
The daily exercises do not take up much time and I have finished in 5 or 10 minutes in the morning. I did the exercises in the mornings and in the evenings at first but now I only do them in the morning.
To put it briefly: I function better now. I notice that I can keep my balance better because I walk more upright. My back doesn't start to hurt so quickly. I have learned how to sit properly so sitting is easier for me now. I have fewer symptoms and sometimes none at all. I notice this every day in all sorts of little things.
Of course I still have to do my exercises. I go on bicycle rides, walks and I go swimming. Regular exercise is imperative to stay supple. The painful areas have not become painless but I can actively try to reduce the pain myself. And that gives me a good feeling