What happens to someone with CBD over time? Unfortunately, CBD is a progressive neurologic condition. This means that over time, people with CBD will notice increasing severity of their symptoms and / or onset of new symptoms. This can occur over months to years. Not everyone experiences all of the symptoms of CBD, and the appearance and progression of these symptoms vary greatly among individuals.
Often over time, movement symptoms start to affect both sides of the body. New symptoms, such as dystonia, swallowing challenges or unsteadiness with walking, may develop. Some people develop spasticity, which is an excessive tendency for muscles to contract in response to stretching, such as by a doctor with a reflex hammer or even by normal, voluntary movement. This can produce constant flexion or extension of joints and, in some cases, muscle pain. If the normal range of a dystonic or spastic joint is not maintained by therapy or splints, the muscles and tendons can form contractures, where the abnormal position becomes permanent.
People with CBD can experience changes to cognitive function, especially in more advanced stages of disease. This is usually in the areas of processing speed and organization of thoughts, planning, multitasking and word-finding. Sometimes people with CBD can act impulsively or may lose some behavioral inhibitions.
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Most people with CBD live five to ten years after the onset of symptoms but some live much longer. Minimizing complications, such as swallowing problems, infections and falls, can greatly improve life expectancy. Your doctor may recommend regular examinations of your swallowing function to ensure that food is not potentially entering the lungs where it can cause pneumonia. They may also refer to rehabilitation therapists for recommendations for adaptive equipment to improve safety with ambulation, and other preventative measures. Quality of life is enhanced by attentive care, maintaining general health, and perhaps most important, by an optimistic and hopeful attitude on the part of both the patient and family.
We recognize this information can be scary and overwhelming to learn and to think about. It can be helpful to talk this through with your medical team and your family, including planning for the future and your wishes for quality of life. CurePSP and the rest of your support system are here to help.
What is happening in the brain to cause CBD? In people with CBD, some groups of brain cells break down and die off. This happens because of the abnormal folding and clumping of a protein in the brain cells called tau. Tau is a normal protein found in brain cells. An important part of tau’ s job is to help maintain the microtubules, which are stiff rods that function as the brain cells’ internal transportation and skeletal system. It appears that the cells’ death is caused by a toxic effect of the tau protein clumps themselves and not by the reduced availability of tau for its normal function.