September 27, 2012 by
Sandra Salamon learning to sail in Ottawa, while fighting Friedreich's Ataxia disease
Life doesn’t stop just because you have Friedreich’s Ataxia disease, as Sandra Salamon is proving in her everyday life.
- Sandra Salamon in a Pulk (Fibre-Glass Sleigh) at Candy Mountain, Thunder Bay.
The first time I went in a Pulk I was around 18-years old. I went with a big group of friends and stayed in a log cabin for the weekend. It was beautiful, a huge fire burning in the background, while a snowstorm passed over outside. During the morning we woke to a range of winter activities. These activities included: Igloo building, Husky sleigh rides and skiing. I wanted to try everything and I was really afraid of heights, so I thought what better way to conquer a fear than go skiing or go down the steepest hill in a pulk! My good friend Paul helped show me the slopes. Paul is experienced in winter activities and works to get disabled people into skiing.
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February 29, 2012 by
The first symptoms of Friedreich’s Ataxia disease include ataxia or uneven gait. Walking gradually then becomes difficult and ataxia patients are ultimately confined to a wheelchair. The in-coordination affects, to a lesser degree, the upper limbs, speech (Dysarthria) and ocular movement (Nystagmus). The brain and therefore the mind, is not affected. As in all neuromuscular diseases, the rate of disease progression varies from one individual to the next. However, progression unfortunately always occurs.
In addition to the ataxia (due to the spinocerebellar degeneration), both the motor and sensory peripheral nerves of these patients are affected. Injury to the motor nerves results in weakness, affecting the lower limbs in particular. This injury also results in the suppression on the tendon reflexes (involuntary movement obtained on percussion of the tendons of the knees, ankles and arms. Sensory nerve injury may go completely undetected and produce no symptoms. It may occasionally cause numbness (Paresthesia) of the hands or a reduction in visual or auditory acuity.
Friedreich’s disease is also associated with cardiomyopathy and a tendency towards diabetes. Cardiomyopathy is a disease of the cardiac muscle, whose symptoms include Dyspnea (shortness of breath or exertion) and chest pain. These symptoms are rarely dangerous but should be monitored.
Lastly. Most patients suffering from Friedreich’s Ataxia disease also demonstrate scoliosis (deviation of the spinal column). It is thought this is caused through the in-coordination and poor posture.
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February 29, 2012 by
Friedreich’s Ataxia was first described in 1863 by German neurologist, Nicolaus Friedreich. FA is a neuro-muscular disease caused by the premature death of a specific set of nerve cells responsible for the control of balance and co-ordination in movement. The initial symptoms appear prior to the onset of puberty – on the average, at the age of 7 in females and the age of 10 in males.
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