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!

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.