The social life of PwP

My super-friendly neighborhood bar that was once the province of baby boom bohemians has been taken over by hearty young millenials in their ubiquitous plaid shirts.

Which leads me to ask: What do you do? Where do you go? Who do you go there with? All of a sudden I feel like I'm in my own orbit, floating in space. People no longer mention events or activities or invite me out the way they used to not so very long ago. I definitely get that people care, and I appreciate their sympathy and support. But sheesh! I'm bigger than my disease!

I know eventually my ability to get out and around will be much more limited than it is today. Already, I can't drive very far without getting horrendous pains in my tremor-afflicted arm and rotator cuff. But there is still much that I can do -- primarily, interacting with other people.

Your thoughts?

48 Replies

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  • Take the initiative? Invite people out to something you fancy? My energy isn't what it was (maybe that's age rather than PD) and I never did like bars. But I do like going out to afternoon tea and I've found some really great (and inexpensive) venues, like art galleries. I find if I take the initiative, I have more control,

  • Do you have a PD group near you? We put together a young onset group where we get together and socialize. I needed the Young Onset because there was so much different between me and PwP in their 70s. Its funny but the last time I went to a group I looked around and my first thought was I don't belong here, these people are old. Then when we did introductions I found they were my age. Damn I do belong here.

  • "old" is ten years older than you are.

  • It would seem that I am old but just didn't know it yet.

  • Ha ha -- you speak for the many, Sir!

  • It would seem that I am old & i know it & I feel it!!!

  • May it forever be so :-) that "old" is 10 years older than you are now.

  • Yes of course you're bigger than the disease! Agree with Stevie3 about taking the lead sometimes in setting things up. Also maybe it's a good time look at different daytime activities. New people will just know the 'now' you.

    M

  • Just had an idea. There has got to be a Parkinson's charity near you. My charity of choice is the Baehr Challenge. All the proceeds got to the Micheal J Fox foundation. There are people that have PD, caregivers, family members and those who just like to share their time with PwP. We even have are on groupies, yes people who just like to hang out with us. Its a great way to get involved but with out feeling out of place.

  • Kendall Jackson Tour De Fox Wine Valley bike ride. There is a charity that I could volunteer for. !!!!!!! lucky !!!!!!!!!

  • I am lucky to have my kids and grand kids nearby.. They fill a lot of my time. My wife and I take rides around the country side in our Corvette. We do not have any close friends any more just lost touch. I do crossfit 6 days a week. Look at the stars and planets with my telescope. Just live a simple and easy life.

  • It's a real blessing to have family close!

  • Becky. PD does not have to define you. I think as we get older we make fewer friends and and have to take the initiative more. Even when I tell someone i have PD I never mention it again. I participate in whatever I can.

  • Awesome

  • i hear you loud and clear Becky and it is a topic that needs a bit more than i gave justice to at this hour. just a few quickies - i see a lot of the suggestions are directed to getting into PD suport/exercie/social clubs. while i agree with some of this, not every group will be a good fit for everyone. u as younger person (or younger minded :) would react better to some than others. i also think that PD is no doubt a big part of our lives but its not all about PD. when i get out with friends, PD is not often at the core of our activity- obviously can't ignore it but don't have to be ruled by it. Idont pretend to have the answers - isolation is taking a tremendous toll on me too. thx for asking the questions. ill be watching for answers - maybe a goood blog topic?!

    all goood things, rk

  • "Yes" to all the above!

  • Hi I was diagnosed 6 years ago at 43. I have since been installed as president of my club. Joined the local golf course. Been on lads holidays. And started up the Glasgow young onset group. I will not be put in a corner because I have a condition. I urge you to start phoning your friends. Don't stop laughing. Living. Loving. Find out what is going on and join in don't wait for the phone to ring you make it ring.

  • Hi Becky I agree people don't consider that yo can lead a social life.

    I go in my local pub here in Yorkshire for a pint and I can hear the hushed remarks." Oh that's him with Parkinson's." Or " He doesn't look like he's I'll." When it's taken all day to get phsyced up to go.

    You have to make your own entertainment and do the best you can.

    If I go out of the neighbourhood and go in a bar o restaurant I still have to use my stick and people may comment." Have you hurt your leg?" or "No fun getting old."

    I just nod and smile and don't let on.

    Recently at Church I organised a street party for the Queens birthday.we had about 100 people attend and I raised £800 for Church funds.

    This was a massive effort on my part but I wanted to show I could still do it.

    This led again to comments like ." He can't be all that poorly." or "Hasn't he done good. Him with Parkinson's as well. It mustn't be " such a big deal.

    There asked me to go on more committees but I've had to decline because we all know how debilitating PD is Martin Yorkshire England.

  • Wow, Martin -- that's amazing. Hats off!

  • Thanks Becky God Bless all you people out there. Martin H.

  • I find the older I get, the less I get invited to events. I think it is a mixture of ageism and Parkinson's. I joined a choir to get me out and meet other people. It can be frustrating thinking you are being excluded, but I believe there is more to it than that...

  • I've heard many people say this.

  • Beckey, I'm not exactly the person to give advice on having a great social life, but there is something in your post I'd like to respond to. You said you had horrendous pain in your afflicted arm and rotator cuff when driving. About two years after being diagnosed, I too had such pain in my afflicted arm and rotator cuff that I couldn't them very much. Then, I went to a physical therapist who gave me some very simple, easy rotator cuff exercises. Practicing these gave me back 99% my arm and shoulder capacity. Have you tried PT?

  • I have, but I'm going to look into going back. 99 percent is incredible! I'd be on Cloud 9 for 40!

  • I think there may be a spot reserved on Cloud 9 for Beckey!

  • :-)

  • It doesn't have to get worse I know people who have this for 20 plus years and haven't changed always think positive .Theboxing really going to help and try acupuncture and yoga d not give the condition that much credit nd theirs always hope around the corner🤘

  • Didn't there used to be a song with the line, "Happiness is just around the corner?" I used to say, "Yeah, but I think it's headed the wrong way." Ha ha!

  • Lol

  • Have fun at the gym💪

  • Ha ha Becky.

    Another old adage is." There's light at the end of the tunnel. Or is it a train coming the other way?"

    Keep smiling al you Parky people

  • That's a hoot!

  • Any advice on sleeping beckey?

  • Last night I had a smashing success listening to guided relaxations, courtesy of Youtube. My dr had recommended Belleruth Naparstak. Here is more about her, but if you're interested, go to Youtube to listen: healthjourneys.com/Main/Hom...

    Now, I must add that I'd had the most rigorous workout ever at Rock Steady Boxing in the afternoon, so when I hit the sack, I was completely wiped out.

    I have another RSB session this aft, so I'll let you know if history repeats itself.

  • Thanks so much and kept up the good work👍

  • Thanks so much kept up the good work👍

  • Whoops! I forgot what might be a key element for some people: I've been taking 6 mg of melatonin at bedtime for the last 5 days or so, although I didn't feel any effects.

  • I really appreciate you taking the time to help me.Kept me posted about the news from the u.k. Thanks again it was most helpful👍

  • Besides taking the lead... tell your friends what you told us. I have been honest with my friends. PD doesn't define me...I am dealing with it. I don't want their pity. I want their friendship as always.

  • Amen!

  • My partner Richard doesnt go out in the evening but in the morning we go out to play tennis and we go for bicycle rides up hills.He gets infuriated by having to sit on the sofa playing scrabble against himself. But he invents projects and now is making a chair doing it when he can. He cant read or watch tv but can listen to some music. I invite people over one at a time for lunch and that seems to be a bit of social life. Hes 10 yrs into Parkinsons.

  • You sound like a dream partner. :-)

  • You are doing great 👍

  • You are doing great👍

  • THANK YOU!

  • Thank you!!!

  • Enjoy your weekend

  • Right back at ya, John!

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