Table 3

The four themes resulting from the analysis

Impact for persons with MD1

1) Decreasing abilities

Many barriers; "no power, no pep, no guts"

Avoiding barriers; "I don't do that much"

Impact for partners

2) Increasing burden

"If I did not do it, nothing happened"

"I am in charge; I give directions"

Impact for both as a (married) couple

3) Finding a mode together

Doing or leaving; renegotiation of tasks

Individual and shared activities; give each other freedom

Impact for persons with MD1, for partners and for couples

4) Lack of understanding

Even the family does not understand

We manage ourselves

Health care: many islands focused on part of the disease

Cup et al. BMC Neurology 2011 11:86   doi:10.1186/1471-2377-11-86

Open Data