Invisible friends

However much we have liked living in Holland, and however happy we have been with the health service here, there’s no denying that it is a major difficulty to deal with PD in a country where neither of us speaks the language comfortably. I, in particular, have missed having someone nearby who would not only be sympathetic and supportive in a generalized way, but who would really know and understand what it is we that have to live and deal with.

We know a very small number of people who have and are willing to talk about their (or their spouse’s) incurable degenerative diseases, and this has been immensely valuable and helpful for me. But the range of experiences is too small and none of them relate directly to Parkinson’s.

What I really want is to join a support group specifically for people caring for someone with Parkinson’s. Many of the national patient associations run that kind of group, but around here they are, not surprisingly, run in Dutch. Although my reading comprehension of Dutch is pretty decent, understanding spoken Dutch is much harder, and answering back is quite beyond me outside the kind of predictable exchange one has with a cashier or a bus driver. So I sadly had to conclude that support groups were beyond my reach for now.

How stupid of me! Do remind me: by what medium am I reaching you now? And might that same medium have something to offer me in the way of support? Oh yes, I have discovered the joys of the internet forum, and I’m hooked! There are several, with slightly different angles and ways of operating. Usually I go to the forum run by Parkinson’s UK, mainly because there is a separate section for carers and because the opinions and experiences of carers are generally welcomed everywhere on this forum.

It’s the most brilliant thing. There are people new to the disease asking anxious questions and people who have had PD for years sharing their experience and understanding of how it can affect you and how you can deal with it. There is moral support, and concrete suggestions, and much considered thoughts. And there are lots of personal stories, some to break your heart and others to mend it again. There’s also fun and games, and misunderstandings and occasionally wrong ends of sticks firmly grasped, but that’s human interaction for you. For a non-Dutch speaker in Holland, it is – if not a life-saver – definitely a mind-saver.