A diagnosis of PLS can disrupt your daily life and that of your family. Fear, insecurity, anger and sadness are emotions that can be associated with the clinical picture. The illness can also raise questions such as: why me, what is happening to my partner, my children, how do I proceed? A social worker can help you deal with the consequences of the disease.
The increasing dependence can affect you and the relationship with your partner and / or family members. You may also be concerned about your children. Are they not overburdened; what do I tell them and what not? A social worker can help you and your loved ones deal with these issues. A social worker can also advise or support questions about work, care and finances.
Do you wonder whether your home is and will remain suitable during your course of illness? Are you unsure whether you can and want to continue living there? Your social worker will look with you at what other options there are and can list the pros and cons with you so that you can make a choice. Possibilities are, for example, a home adaptation or a move.
How do I request (home) care and which care organization is right for me? What options are there in terms of care and where can I request them?
There may be people in your area who are happy to help you. But how do you organize all this help and get the help you need? In consultation with you and your informal carers, it can be determined which of the carers can arrange the coordination of assistance. What options do the people in your network have and who can provide support in what way.
Can and / or do you want to (continue to) work? How would you like to fill in your (adjusted) working week? What is possible, which activities are physically feasible and give you energy? When do you decide that work really will no longer work and what rights and obligations do you have towards your employer and your employer towards you? The social worker informs, thinks along and guides you through this process.
For me, the relaxing conversations with the social worker have made a positive contribution to accepting the indispensable aids, crutch, wheelchair, adapted shoes, etc. and thereby learning how to deal with the discomforts of this disease. As well as the support and interest towards the partner, which is of great importance for someone with a muscle disease, we have experienced together as very pleasant.