Warning: this post contains no statistics.
Several friends have recently suggested I listen to a podcast series, "Where should we begin, with Esther Perel". It is a podcast of relationship therapy sessions between couples and the host. The very last episode of the series (series 2 episode 8) is about a couple where the husband has early onset Parkinson's.
In clinic we see patient's for as much as an hour and a half (if they're lucky) per year, leaving the other 8,760 hours per year without our support. In the time with us we focus on their agenda and our agenda - tremor, swallowing, falls, cognition, stiffness, slowness: the list goes on.
The minefields we don't (and probably can't) help them navigate though are vast. From the existential to the personal. Love, sexuality, closeness, meaning - these are not problems we can address in five minutes on a Tuesday afternoon in clinic.
Parkinson's specialist nurses are an invaluable bridge between specialist clinics and 'the big wide world'. Parkinson's UK provide excellent support around the UK to people with Parkinson's and their partners. But the greatest support we each have is those around us - if only we can develop the vocabulary and resources to engage with our families, our partners, our friends.
If you have Parkinson's, or if you know someone who has Parkinson's, I strongly recommend giving this a listen.
(also available on iTunes and other podcast providers)
No comments:
Post a Comment