How do you handle the discomfort from family and friends?

My condition is a combination of PD and Dystonia. Many of my friends are far away, or if near here are quite uncomfortable with the changes. One saw me about a year ago, and had to walk out under the guise of picking up some items, and the wife cried (she wrote me later about it later). And that’s the better ones. Most of the rest do not get back to me.

My family are the same. I can’t drive, and the Holidays are spent alone. I don’t go to the pubs as they have stairs. And I don’t drink.

What can you suggest for socialising? I’m at a loss here. Thanks!

8 Replies

oldestnewest
  • Oh Gansbru, that sounds very distressing. I also read your post responding to the sex and affection question, so I know that you are suddenly single as well.

    I think that maybe your family and friends will come around. Perhaps they need to be educated about PD. MAybe theyl just need to get used to the idea that "the real you" is buried in that parkie exterior.

    You don't say if you live in a city, a town, or what, but there must be other parkies and people with disabilities. Or book groups, chess clubs, exercise classes…Maybe you can find a social group or start one.

    Finally, you are not alone because WE ARE HERE. This is a community. I am pretty new here too, but I am quite impressed (and cometimes, comforted) by the quality and quantity of the communication here.

    Best wishes and a brotherly embrace.

    Philip

  • I am also impressed (and sometimes, comforted) by the quality and quantity of the communnication here!

  • Thank you for your kind reply and a rather fun introduction of the term “Parkie Exterior’! That made me smile and laugh on the inside.

    I appreciate knowing that I have a community that understands. May you have a very Happy New Year!

    Gary

  • I am sorry your family and friends have reacted in this way. How distressing for you. I don't know where you live but in the UK there are meetings you can attend and, I believe, they will arrange transport for people who cannot drive. Do try to get in contact with other people with PD. We are there to support each other and we never judge. Good luck for 2012.

  • Thank you all for the input. I live in Oxford, UK, returning home to where I am a graduate of Oxford University. I love being home.

  • Never give up. I have people over, I go to meetings, and I tell people I need an escort (no not that kind). I go to Parkinson's PD classes. Do I miss going dancing, walking in the park and riding the subway? H### yes. But I am determined I will again. Good luck to you.

  • I think of all my experiences with having Parkinson's Disease - the reaction from friends and family was the most shocking (from a few-not all) I was taken by surprise when one friend told me I was a problem- and she did not need any more problems! Just remain true to yourself and reach out to people who will be supportive- there are many who can assist in driving and connecting you with good people- the people I have met in the PD community are awesome- truly angels- just keep on looking.

  • hi

    a v late response to your commment about firends adn relatives

    i joined the local PD group when diagnosed with PSP Dec 2010 and they r great:

    eveyrone is so positive - at 66 i a m almost hte youngest there and v few r computer rliterate but thsi is a good site 4 beign a great community

    lol Jill : :-)

You may also like...