[Yam1]

Friends don't call much any more. In the beginning 10 years ago when the PD wasn't obvious, life and friendships went on pretty much as before my dx. But as time went by and I appeared more and more affected, those people I counted as friends called less and less. Until recently I would still call them occasionally because they always sounded happy to hear from me. But it hurts me so to realize that I'm the only one making an effort. So I let everybody off the hook and I don't call them anymore either. I wouldn't talk about the PD much, if at all, we'd talk about whatever we had always talked about - family, kids, work, politics, the news etc. But now it just doesn't seem worth the trouble. I'm just sad about this.

[Jaye]

My best friend in all the world stays away...
Too painful to talk about.
Jaye

[lindylanka]

I know this one too, and yes, it is sad. BUT......I've made other friends, who see who I am despite the 'look' that others can't cope with. For me this can look like I am slightly drunk, not very with it (esp. when speech is not so good), and wobbly. Add to this the fact that I am developing a very visible case of vitiligo, inherited from my gran, like the PD, and I think that many people simply cannot see past what they are seeing to find the same person they once knew.

I have found this at times distressing, and occasionally a relief, but overall it has narrowed my world. I really hate the fact that people say things like 'you must get out more', or even worse "you are not as sociable as you used to be" with no hint of welcome or invitation !!!!!! Actually I do get out, and I am happily developing my garden, which is a joy, and newer friends are both supportive and fun. I do often miss the friends with whom I had a long and shared history.

Yam, I had to do the same as you, just let go. It has slightly amazed me that the same people, if I do bump into them, always say how well I look, and give me their take on all the things I should be doing! I think maybe they have more problems with PD than I have!

I lost my dearest friend to cancer last year, she was the exception to the rule, but then again she was coping with something much more difficult than me. I miss her immensely, she was the real thing.

[stevem53]

Ive had mixed results with friends..It drew some closer, pushed some away, and still others dont know what to make of it..I have one, whom I dont have any dealings with anymore who treats me like a dog..I shouldnt use a dog as a reference, because most people are kind to animals, but I think you folks know what I mean..This journey has been an eye opener in some respects..Its like a dimension of life that I never knew existed..good and bad

[GregW1]

One thing that has surprised me is that my predictions as to who would stick by me and who would not (for all sorts of reasons, so not a blame thing here) were wrong as often as not. People I had known for 25 years just eased their way out of my life as symptoms progressed, while others remained true blue. Some people I had known a long time but never been particularly close with have become reliable and regular friends. Some folks I had thought would simply be unable to handle having a good friend who is now an object of stares at the grocery store, are unfazed by my symptoms and the attention they sometimes draw, and never betray any embarrassment or awkwardness around me. Others still call or visit but from their looks and tone of voice you would think I was ready for hospice (which I'm not, dagnabit!). And finally, some people (among the "temporarily healthy" as someone here once put it) who never knew me before PD have waded right into what are becoming or have become deep and lasting friendships.

So it seems that just as this disease reveals to us sides of ourselves that, for better or worse, didn't see much daylight until after dx, the same goes for those people whose lives have intersected with with ours.

It has been both a sad and happy experience, at times a huge disappointment, and at others a delightful surprise. It seems that great philosopher of popular culture Chuck Berry was right (as usual) when he sang, "it goes to show you never can tell."

Greg

[reverett123]

One is that we know what it is to be the guy that makes folks feel a little bit awkward. So far I have handled it by being upfront about PD but in a very particular way. If I'm freezing up, for example, I'll say "My damn meds are wearing off. Craziest darned disease ever made. I'm afraid you'll have to bear with me. Sorry 'bout that." and no more unless they ask. Most seem to assume that I'm brave. (Just show me the door, bwana.)

This may be a guy thing, but if you give them the bare minimum of facts and let them take it from there they do better. I think most people have a part of themselves that is scared of us because they know that something similar waits for them, too. If we aren't around it is easier to pretend otherwise. We "on honey dew hath fed" (any Coleridge fans?)

[steffi 001]

Yam,your first phrase brought a lump to my throat.I can almost feel your pain..and Jaye too.Your closest friend ...unbelievable.I haven`t as yet experienced this painful stage.I say "as yet" as it sure is the case that we never know how this illness is going to knock us off our guard next.I truly don`t know if I have the right words to say about this...but can only offer cyber hugs.
In my own experience "to date" I still have all my contacts and have made many many more wonderful friends,not least through this forum.All I can offer,and it is a poor attempt at making the sitiuation seem not so bad...is this.Perhaps the friends you have simply find it too painful to watch you going through this process and as someone said,Reverett I think,it might also be a little selfish in that it reminds them of what might happen to them,that life is fragile,and any disease is possible.
I have always said that I am glad to be the one in my family with the illness for I would find the notion of watching my sisters and brothers go through the same,almost an impossibility.But I knew my father was dying and somehow made it through the days,facing him,knowing the prognosis,knowing each day was one step closer.I know that this isn`t the case here but some folk just don`t have the strength to deal with illness of any sort anda would just sooner pretend it didn`t happen.Tough for all who miss out on the friendship.Perhaps they need educating in this condition.
This is where I take my hat off to the wonderful carers whose hearts must be raw at times but who labour on relentlessly,always there,always available.

I hope very much that you consider the folk here to be your new friends.Distanced in miles maybe but not in spirit.And Yam...when you feel a little brighter,give them a call,and try arranging a chat in the safety of your home.Surely they would travel to you.
I hope you feel less alone now...you are well supported here.

Love
Steff

[gaykir]

Yam - Boy did you hit the nail on the head. On top of everything else, we moved to be closer to family. It's hard to make new friends with PD.

Luckily fate stepped in and lent a hand in our case. We found the Dallas Area Parkinsonism Society - it's a non- profit group that provides free physical therapy, speech therapy and CareGivers support groups all over the Dallas area.

We participate in a group in Plano. Because of this group we've made some very dear new friends - all in the same boat with us. We socialize and no one worries about dropping food on the carpet or needing help in the bathroom - if your spouse isn't handy to help someone else's will step in to assist.

The sad part is that the group is growing rapidly as new folks are diagnosed and several older members have recently passed away. That is the hardest part - you get to know these families and feel very close to them. Our old friends send e-mails once in awhile but you are right, they don't call any more.

I recommend you try to find a Parkinsons' group in your area. It has been a life saver for us. And with these new friends who really undertsand the situation/problems we face - we don't miss the old friends so much.

[jes123]

this is a subject that i have been dealing with for years. when i was first dxed, i had a million buddies; i knew everybody & i never expected pd to change that.
i remember standing in a lobby w/ my two young children and running into a girl that i thought was a dear friend. she looked right through me and asked my kids how i was doing and how did i feel. never once in the entire conversation, did she acknowledge my presence nor did she direct a comment in my general direction. that's when i realized that pd had changed my life forever. i was angry for a long time after that incident until i realized what was going thru her head. she was scared ********!!! i was living breathing proof of her own mortality and the fact that i could go from drinking in a bar and dancing to a band one month and then a couple of months later be this broken and bent person was just more than she could handle. it is a sad fact that our difficulties cause other people to back away in shock, but i really believe that it is the fear that if this could happen to me, then they too, are vulnerable. through the years tho, i have managed to fill my friends dancecard but this is still a lonely damn disease..because even with the best friends in the world, you're still out there on your own when dem ole' cosmic blues come down on you at 2am.

[GregD]

Yam - Yes it's a terrible thing to have those whom you thought were friends fade away because of an illness. The way I see it, they weren't real friends anyway.
I had a guy that I grew up with do this to me. We were thick as thieves. If one was around, the other wasn't far behind. As the PD started to take it's toll, he quit coming around as often. Now I might see him once a year. The last time I saw him I asked what the deal was. He said that it hurt him so much to see me in this condition. He wants to remember me the way I was. Personally, I think that's a lame excuse but that's the way it is.
Others have mentioned joining a PD support group. I agree. I have made new friends who know what I am dealing with. Friends that could be here at 4:00am if I needed them to be. Yes, this can be a lonely disease. Or not.

GregD