Website and Blog for the Sam McMahon Trust

Over the past number of months several people have approached us asking about the services that are provided for Sam. That got us thinking. After consulting with other families it seems that the physical therapy services for people with Friedreich’s Ataxia in Ireland are random and somewhat haphazard.

Some people have regular physiotherapy, others have hydrotherapy. Some get nothing at all. Why is that? How could people with the same condition get different services or none at all? We know that the disease does different things but all too often the results are the same.

We decided to create a survey. If you are the parent of a child or young adult with FA and live in Ireland, would you fill it in? Follow the link here and then submit.

Armed with the results we may be in a position to ask for better services for those with FA!

The current issue of the Muscular Dystrophy Association’s (MDA) Quest Magazine includes an interesting and informative article on Friedreich’s Ataxia.

As well as including facts about FA there is an update on current research. This is followed by interview with neurologist  Susan Perlman, a specialist in the field of FA over the last 30 years and cardiologist  Mark Payne. There are also useful contributions by Physical therapist Melina Guttry and Speech-Language Pathologist Anne Wallace.

The article concludes with four profiles of people living with FA. To read the article click here.

Today Sam had his first therapeutic horse riding lesson. Accompanied by his older brother Ben, both boys had their first experience of sitting on a horse. We were all a little nervous, especially when we saw the size of the horses up close but once they were in the saddle everyone began to relax. They learned how to make the horses start, stop and turn left and right. With two girls guiding the horses and Anna, the coach giving instructions the boys soon relaxed. As Ben learned to lean forward, Sam was encouraged to balance without holding on and to twist and wave.  The time went by so quickly that there were two disappointed faces when Anna said ‘That’s it’. On our way out I was reminded to book for next week!!

Therapeutic horse riding is beneficial for people with special needs. It develops muscle strength, balance and co-ordination. It is also helpful for posture and works on tight muscles. A great work out without realising it!  On top of that was the feeling of success and well being that comes with achieving results.

We took our lessons at the Festina Lente, the name means hasten slowly in Latin. It is a non-profit charity and works to provide a range of  training, occupational, learning and employment opportunities for people whose needs are not being met in the mainstream services.

A recent study by Ilg et al examined the effectiveness of a 4-week intensive coordinative training for 16 patients with progressive ataxia (4 participants had Friedreich’s Ataxia). Significant improvements in motor performance and a reduction of ataxia symptoms were observed in clinical scores after training and were sustained at follow-up assessment.

The study concludes that ‘coordinative training improves motor performance and reduces ataxia symptoms, enabling them to achieve personally meaningful goals in everyday life‘ . It recommends that this intensive training should become standard of care.

For details about the physiotherapeutic exercises that were used in this study click here.