I have written about support before, but I think it is such an important topic I am going to write about it again.
- Everybody needs somebody
- If you haven’t got it you won’t get it
Support is needed for many things:
- emotional support
- finding out about benefits, legal standing
- finding other people with Parkinson’s
- finding out about the symptoms/meds for Parkinson’s
- finding out about research opportunities and support connected with them
I haven’t felt alone since Diagnosis Day, five years ago. This is partly due to a postcode lottery of PD nurse* and PD support in my local area – both of which have been great. However, I do think it is also partly due (and I am blowing my own trumpet here) to me being very proactive in seeking out support.
I realise that not everyone wants to explain to the person next to them in the theatre that they are sitting next to someone with a degenerative disease (I have). From my perspective this not only raises awareness, but also makes me feel a bit less self conscious of my squirming and tremoring arm in the theatre, rather then sitting there trying to hide it and not enjoying the show.
As this ‘thing’ advances I need support more than ever, it would be very easy to sink into a negative world. I am aware that not everyone wants to write a public blog or give talks to raise awareness deal with PD.
*I no longer have a PD nurse … hope to get a new one soon…
However support comes in many guises … not many people want to shout ‘I have PD’ from the rooftops (not done that yet). But there does appear to be something for (most) everyone. Some people want a quiet coffee, some want a support group, everything is available, but it sometimes takes some research to find it.
Support lines are brilliant. There are a few things I have found out when ringing support lines :
- you do not have to know what you are ringing about
- you do not have to have a plan of what to say
- none of the support lines I have spoken to seem to have a time limit
- you can say goodbye and put the phone down at any time (to be honest you don’t even have to say goodbye – the person on the other end of the phone has been trained not to be offended).
- you do not have to be suicidal to ring the Samaritans
- Support Lines :
- Confidential (read their small print), can ring and just chat, no one needs to know. There are various types, PD specific I have used on many occasions, but they are not 24 hour.
- I will now mention the ‘S’ word which is available 24 hours a day. I am obviously talking about the Samaritans, literally 2am and someone is there on the end of the phone, not judging, just listening. I have rung them on several occasions as the nights can be very difficult. And in fact just knowing there is someone there can make me feel calm and supported
- Local support groups :
- for emotional support and practical support in a safe environment. To discuss and seek support from people who understand, ‘they get it, because they’ve got it’.
- Medical professionals :
- for medication support and treatments. They are brilliant but their main concern is the bit of me that is broken, emotional support comes from elsewhere.
- Charities :
- source of lots of information and links to other help.
- Citizens Advice :
- this is obviously outside the ‘PD world’. So don’t expect them to understand PD, ‘they haven’t got it, so they won’t get it’. But they can give advice on many things, benefits etc.
So there is something for everyone, the most important thing is that people shouldn’t feel alone. If you haven’t got the support you need speak to your GP, PD Nurse, Charities.
I have phoned the support lines, The Samaritans, am a member of the local support group, and have formed the infamous Dagenham Dancers (neither from Dagenham or strictly speaking Dancers).