Lost Friends

[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 shitless!!! 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

[therese]

Yam...I read with sadness your post related to friends...how they seem not to want you in their lives...seemingly, based on your having PD...its changes...for you...and for them. I'm not too sure that I can really add anything more meaningful, here, than what others have already said...all so true. I think, though, that I would just like to offer this. I believe that it is times like this in our lives that we really have to examine and understand the real meaning of "friend"...to differentiate between "friend" and "acquaintance". I think that, in life, one is very fortunate to have even ONE "friend", i.e., one who is able to see far betond the surface...who is able to go into your heart, mind and soul to discover exactly who you are. It is true...people sometimes are unable to cope with what they encounter in another as a result of having PD...but, I still maintain that a "friend" will take the time...make the effort...to do what is necessary to cope...to better understand what's happening...and to want to be "there" for another...perhaps even more than ever simply BECAUSE the need is greater than ever to be a "true friend". If I were you, I would examine very closely all those who have made the choice to exclude you from their lives, and try to arrive at a decision as to whether or not these people EVER were good "friends" in the real sense of that word...and try to think of it as "their loss", not yours. You know the kind of person you are...apparently, they don't...and it is this, precisely, that renders them not deserving of the word "friend". As others here have said...you will have good friends, here, Yam. We may not be as tangible as those who have cast you aside, but we are "here" for you...understanding so well your need for real friendship. Just stay with us...you have found a very safe haven, here.

Therese

[stevem53]

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

Greg..Sometimes I wonder if people disappear because they figure they will have to do things for us all the time?..Favors, etc

[GregD]

Steve,
I'm sure that being asked to do things for us all the time is a concern for some. I think jes123 hit the nail on the head. I am living breathing proof of his own mortality. It is the fear that if this could happen to me, then he too, is vulnerable. People tend to freak out when they are forced to see thier own mortality and realize that it could happen to them too.

GregD

[stevem53]

Yes, that could very well be the case

[steffi 001]

Someone who will go that extra mile with you.
Someone who tries to understand,even if they find it hard.
One who will place your needs above their own,willingly,gladly,and without wanting "PAY BACK"
One who needs only to say "I am here and I care." and you know they mean it.
Someone who will spontaneously do something to brighten your day,however small.The thought and the desire to make you feel better is enough.
A person who having spent time with you,leaves you feeling better about yourself than at the start.
A friend is someone who you can share your innermost thoughts with...and know they will not turn away.
Someone who "hears" you.And I mean...really "hears" you.
A friend can share your hopes and fears,and level with you about the reality of them.
A friend is someone you can sit in silence with comfortably...and still feel as if you have had a terrific time together.
Someone who arrives at your home,and notices just one thing that they can do to help out,and actually walk the walk..not just talk the talk.

A friend is someone who is at the other end of a phone,but who can say truthfully..." I am busy right now but I will get back to you as soon as I can" and they do.And you can be reassured that they will.
A true friend will not make false excuses.They will not skirt the issue.
They won`t ever say anything to hurt you.Or if they inadvertantly do,they will put it right.
Someone who will spend time thinking of ways to build you up,but not falsely.
Someone who doesn`t keep a tab on all that they do for you.

A true friend is a stress free zone,a comforter,a place of warmth,of safety and is solid and dependable.
Someone who thinks nothing of giving up their favourite tv show/baseball match...in order to be by your side .

How many of us know these type of friends? How many of us can count on one hand this type of friend?

Yam...some friends are no more than ships which pass in the night.Others dock next to you and drop anchor.

I`d say there are quite a number of anchored ships,here on this forum.

x

[vlhperry]

Alot of the reason I don't see my former friends, is we no longer share the same interests. My life revolves around how my symtoms are on a day to day basis. I have made an effort to make new friends. I have met a Ukrainien woman who is depressed because she is having difficulty with the lanquage barrier. I rode my trycycle up to our library and got some mysteries written in Russian for her to read.

Almost everybody in the neighborhood recognizes me because I walk my yellow labrador, Buddy, several times a day. He is well behaived and walks well alongside my walker. It is amazing how many dog lovers are out there.

Love,
Vicky

[K Hamilton]

I've never been good at making friends, and we don't socialize much, but there are still some people that I know I could call at 4:00 AM for help and they would be there. I guess that is about as true a friend as one could get, really.

At business meetings, if my hand (or body) doesn't behave itself, I just tell people politely that I have Parkinson's, and ask them to please try to ignore the hand. It usually works.

[Thelma]

Well like Kris I have not been to good at making friends. I have always seemed too busy for the usual round of chit chat gatherings and have been too serious for most groups.

I enjoy a good conversation and am a good listener until I have the knowledge of the situation and then you will hear me out. lol

Small talk at work even used to irritate me, wonder why? as most folks seem to like it.

My writing skills have not been the best as well and the computer requiring typing drives me crazy. Guess most things drive me crazy lol lol lol

I have never ever trusted the luv ya, kissy kissy brand of talking and have seen many people taken in by it and sorry to find out that it was all just wind.

But the topic here is friends is it not and I have been a bad girl trying to talk about other things and not staying on topic.

If you die and 6 people attend your funeral all supposing to be a friend of yours then you are extemely lucky because if one indeed is your 'friend' then you are more lucky than most people.

I am a 'friend' to a lot of people I don't really have anything in common with yet they are my friend.

That is stupid you say well maybe not so stupid.

You see I don't put labels on the people I know. I am friends at one time or another and maybe on the other side of the fence at other times.

People are people and I was not born an identical twin so to accept people as they are is good for me. I don't think to ask someone to come and help me and have them say I can't is any indication of their not being my friend just that they are a lazy bum.

I probably know this as I probably have done the same thing to them once or twice.

I can't in any way perceive the future and what they will be to me tomorrow or the very next day and I don't worry about it. I don't think they do either lol

I know some will say here 'but she doesn't have Parkinsons' and no I don't but I have had problems of a physical nature all of my life and have seen the people who have used their problem to elicit a sort of communication opening and after being said over and over brings about a who the hell cares attitude and they will tend to bypass you if they see you coming.

So if you want a friend then tell them what your problem is and make it brief so as you had to do to live it then let them adjust slowly.

I am sure you personally and me as well have had somebody take you by the arm and yackedy yak for hours on what their problem is. It can even be far more serious than mine or yours and yet I grow impatient to end it.

I need to come here to see somedays if I can find a way of not thinking about myself and get interested in another human beings thoughts.

Thoughts about any subject interest me.

Even one about the friends I don't have and the friends I do have. The scales aren't balanced and maybe they shouldn't be as that leaves room for anothers thoughts.

Boy I do get carried away sometimes but my choices for expressing myself are running out.

Till the next time folks I bid you adieu


Note of interest to none but myself

Took a typing test a couple of days ago and got 58. Best I ever did. But you know it's not me it's the damned fingers. lol

[aftermathman]

some through embarrassment at what I have become.

Still, made some new friends (some on BT2) and arrived at the conclusion that wife / family are what matters most. Might not have seen what I had got where it not for PD, cliche I know but true.

Neil.

[reverett123]

To me it seems that "friends" is a term that is used a little too freely because our language doesn't supply enough words for the different levels. I think it was Kris that mentioned the 4:00 AM test. To me that is the dearest friend, the one I could call at four in the morning from those terrible places such as the hospital, the morgue, or jail, and they would come. I have two or three of those and count myself lucky.

There are others who don't know me very well but who show genuine concern if they encounter me when I am "off" out in public in my small town. I count them because they would help if they could.

Then there are others here who listen and support. I guess to me the Act of Kindness is the marker of a friend to me. One invited to visit in his home for entirely too long. Made a long journey to meet me at the airport and was there in the crowd writhing with the worst dyskinesias you can imagine and holding a sign with my name on it because he had never laid eyes on me. I may never see him face to face again, but he is my friend.

Be kind at every opportunity. Especially when you are in pain because that is when it is most valuable.