Showing posts with label Real life;. Show all posts
Showing posts with label Real life;. Show all posts

Thursday, 25 October 2018

Flying the flag, and raising support

At PREDICT-PD nothing we do would be possible without our funding from Parkinson's UK. In clinic, we know how invaluable the support they give to people with Parkinson's all over the UK.

I have just received a wonderful phone call from Parkinson's UK, offering me one of their places in the London Marathon 2019. 

Please help me make groundbreaking research a reality, bring us closer to a cure, and provide life changing support to people with Parkinson's, by sponsoring me at here 

I'm aiming for a Good For Age time of under 3 hours, smashing over 20 minutes from my previous record. Every donation will spur me on through training in the long winter months between now and April. Follow my progress on Strava. Last weekend was my first 20 miler since the 2015 London marathon, and this Sunday I'm running in the Wimbledon Half marathon.

Wish me luck!

RNR

Wednesday, 10 October 2018

Real life: Parkinson's and relationships

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)
 

Mild Parkinsonian Signs in a Community Population

One question that many of the PREDICT-PD participants ask me is “I am slower than I used to be, does it mean that I am getting Parkinson’...