Friends Reactions To News Of Our Diagnosis..

Hi. I have been diagnosed with PD since June 2019. I am finding different friends respond in different ways, to my news that I have a progressive neurological disorder. Every person has been pretty upset obviously. Some are very supportive and keep badgering me (in a good way) to be positive etc. Others really get on side and offer lifts to various appointments etc. But quite a number seem to think that they don’t quite know what to say, so say as little as possible. This can add to my depression, as they’re still good people - but their lack of response and distancing themselves, actually is isolating. It feels like I have lost some good people, due to PD.
I wonder what experiences you have had with your friends coming to know of your PD ??

I’ve actually lost touch with a couple of friends because I couldn’t bring myself to tell them, so have just allowed myself to drift apart from them. Those I have told have been pretty good about it. Another friend who fell into the same category got in contact with me by email for the first time in 3 and a half years a few weeks ago and I emailed her back saying the reason I had been out of touch was that I’d been diagnosed 3 years ago and had largely been avoiding people since. We’ve been emailing back and forth since, and we will be meeting up at some point. I’m glad to be back in touch with her.

I would try to cut some slack for those who are saying as little as possible. Putting myself in their position, I think I would struggle with that situation, as far as knowing what to say or not to say. They probably just need time and more exposure to you to get used to the situation and find their feet with it.

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Hello the reaction you have experienced is i suspect true of most. Fact is some don’t know how to react or what to say so stay away for fear of causing upset. For me i decided to meet this head on from the start. I have always been open about my diagnosis and effectively told everyone along the lines of ‘i need to tell you something you probably won’t know what to say so you don’t have to say anything now…you need to know i am alright talking about it and when you are ready you can ask whatever you like.’ There is also an element of educating folk to understand that i would ask if i needed help, others had to learn to sit on their hands and not take over however well intentioned because i looked awkward etc. Quite hard work initially but everyone quickly learned to take their cue from my lead and it ceased to be an issue. Maybe you could adapt this a bit to suit your circumstances- lead from the front worked for me because i don’t feel sorry for myself, don’t want anyone’s pity and am determined to manage my Parkinson’s my way. One more thing, if things are said in my hearing i will challenge but have no interest in what they may say amongst themselves. I have been fortunate not to lose any friends but you may have to accept some may not just be able to cope - there is often an element of ‘but for the grace of god go i’ which creates guilt that is hard to ignore. If my way doesn’t suit i hope it may have helped you think a little differently. Good luck.
PS Gojo makes very valid points

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I think @GoJo & @Tot make very valid points and good advice. Take it slowly and just be you remind if necessary your friends you are still you. Perhaps get some leaflets available from Parkinson’s UK they could help. Please remember you are still you :sunglasses:

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My friends learnt a lot from the bbc documentary on new treatment trial, helped them understand symptoms a lot better, sorry i cant remember name but talked about a lot on this forum

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GDNF it is called.

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I was running a pub when I was diagnosed. So I told all the regulars. Everyone was great about it. They told everyone new to order half’s in pint glasses as that’s what you’d get anyway. I’m lucky I don’t have a visible tremour which everyone expects. I’m just a little slow moving. All my old friends have found out from my Facebook posts. Im not aware that anyone’s avoided me. Some reply to my posts, most just like them. I’ve stopped worrying about how many reply. Try not to think to badly about others. Think how you might have responded to someone with odd movements before you were diagnosed. Some friEnds only dip into my life occasionally and I drop into theirs occasionally. You have to put yourself out there. If your aware that some people are specifically avoiding you though, invite them round for a drink and chat. Don’t give up though. Good luck and remember you have a whole community here to help and befriend you

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