I don't know, but it seems that my non"Parkie" friends have deserted me. I may be reading into this, but they seem to have abandoned me like this PD thing is contagious or that they just don't know what to make of it , or..they think it's too creepy. I don't talk about it or complain to them. I feel that they are uncomfortable being around someone with PD. Sad!!!!! I am sad over this. I wish I had some Parkie friends to hang with. I was a concert musician before Dx and my music friends have also turned their backs on me I guess because I can't play with them anymore like I used to due to the f********tremor. It really hurts. And I live alone. No husband, no pets are allowed in the apt. bldg.,. so I don't even have a dog as a companion. I guess I'm just having a "pity party." ;-(
Pity Party: I don't know, but it seems that... - Cure Parkinson's
Pity Party
No need for pity , we are here for you, so get a smile on yer dish and cheer up
love
Al
I felt the same way, at first~about 6 1/2 yrs ago.
Slowly the friends have returned. Praying that as time goes on your friends will return and/or you will find new ones.
Remember we are all here!
Thanks DiCan! I really need to find new friends..I do feel that I have friends here, at least! Supportive ones who have been there, or who ARE there!!! This group is a great help. Lotsa love all around! Thanks mates! xoxoxo
Hiya
No need to feel sad,you got plenty of friends on this site...we are and always will be here for you.
I too hope your friends return and that they see Parkinsons for what it really is....It is not a "disease"....you see it just highlights the total ignorance people have about it.
Anyway keep your chin up and keep smiling
Take care
Andy x
To be fair, if your "friends" have abandoned you then they are not really friends. I have friends who, at first, found it awkward to talk about PD but after i initiated the conversation about PD they were fine. It is a fine balancing act but true friends will make time for you. Anyway, there is always us "Parkers" to give advice or just to have a chat with because we DO understand. An exclusive club you would prefer not to have to be in but hey - shit happens.
Feel free to ask anything from anyone.
I have been off the radar for about a week with sleep problems but I am back. Did I hear someone shudder? LOL
Be well
Thank you all! I just need to keep on truckin'...I have what you would call "false friends" and it is really no loss, then. I find comfort in this site. Cheers!
Drew is right if they were true friends they'd be there for you. However, I did feel the need to share information with friends and family so as to give them insight on Parkinson's. I will send the letter in a message to you.
Take care and don't worry about pity parties, I believe everyone on this site has had at least one since diagnosis. The key is to be able to let it go and that's what we're here for.
Terri
Concert musician, what do you play x
Viola!
The tremor makes it frustrating to play, but I still make myself play, most days. No more intricate music, mostly simpler baroque music and learning and playing jazz, and improvising and singing jazz standards, etc.
You are right, your "non Parkie friends" do not understand the sickness, they're afraid to ask questions just in case they upset you. As Drew wrote they can't be "friends" anyway if they don't see or visit you. If you want more "Parkie " friends, try and attend the local Parkinson group or the nearest group to where you live. There you can be yourself and can meet true friends. I did.
I had the same thing happen, but learned they were not true friends. It hurt at first to think I person could not have a meal or a cup of coffee because my shaking was offensive to them, Well new flash I found it embrassing to have well meaning people stare are me like I had antennas on my head. But such is life, I m new to this board but you will find much help and friendship here, it's hard being alone. Congrats on making yourself play your Vioa everyday, I m a quilter I even when I could not pick my left arm I tried to always find something I could do, Guessing I m say it is better to stay busy and a pity party is needed sometimes. Take care
If your friends have deserted you now it means they were not true friends in the first place.
Suggest if you want a dog move somewhere else and get one, dont let any thing get in the way of your own personal happiness. A small dog is a fine companion and lots of dogs out there also very friendless that need a rescue and a friend.
Hi, yes no you are right, we have very good friends who know all about PD from us, but still they can tend to leave Peter (my husband who has PD) out of the conversation as if he was either not there or doesn't understand whats going on, I find this very frustrating, but afraid I have to tell them and they are still good friends and support all our events involved with PD . However we do now have a circle of very good friends with PD through our local group and this is a bonus, they and there carers have opend up a lovely new circle of friends who understand most of what we are going through. Keep striving and take care, we have a cat and I believe she understands Pete well xx
I am sorry you feel alone.
People are funny..they get used to the mental description they have created that defines you ( musician, athletic, funny, skinny or what ever ) Anytime something about you changes, it shakes their inner definition of you and makes them confused .They don't know how to act. Many people who drop a lot of weight find that their friends don't know how to relate to their new bodies.
People who develop life changing illness often find their friends don't know how to act...so they avoid their discomfort by avoiding the situation.
It doesn't mean they are not /were not your friends..it just means they don't know what to do or say now. They may come back around, they may not...but you have lots of friends here who understand Can you find a local Parkinsons support group? There you will find lots of friends who truly "get it" and would love to share their time, experiences and friendship with you.
Best wishes.... you are NOT alone
My neighbors don't invite us to the Christmas open house,or any of the cookouts or children s birthday parties.I have one friend thatb still comes overand we go to lunch.I think I'm just boter to my daughterand son in law, I don't see them much. my12 year old granddaughter is with me a lot. but I have a feeling she's unaware of just how big this monter is.
There is an old saying that says, "You find out who your true friends are when something good happens to you or something bad happens to you." I think this is so true. If your friends don't stick with you because of your illness, then forget them! We are all here for you and completely understand how you feel.
My daughter (stop me if I've told this story ) told me on the way to the Parkinson's Walk that she wanted a break. Later that week "don't call me unless it's an emergency". She did come by to spend a little time wishing me a happy mother's day (irony) . I'm so disturbed by this I had to make an appointment with the social worker at my neuro's office . I'm so fortunate I could. Tho't she was my BFF. Well, life goes on and it could be worse. I know you too will make new real friends.
Most people do not understand PD and are too busy to take the time to learn, so they simply avoid the issue. I find my SIG meetings help. Perhaps your doc knows of a local group you can join.
I like a little pity party now then. It feels good, it seems to clear the cobwebs out of my head with all those tears. Seems to me that when the pity party is over, I feel better. And I hope you do too. It takes a lot of work to get used to this diagnosis and to make adjustments in our life for the Parkey part.
I too was abandoned by many friends. l was so hurt,but I came realize that it's not personal. It's about them. They are frightened and it hurts them to see me because I'm not the "energizer bunny" I used to be. Their pain over it obscures their compassion for my pain at their absence. Luckily I retained 3 best friends. One of whom has Parkinson's too. (What're the odds of that?)
I have lost most of my friends too... it's ok to throw a pity party every once in a while.. but we aren't alone! Now that I have a decent computer I hope to be here MORE often! I wish I had fellow parkie's to hang out with too... being young parkie makes it hard.
I appreciate your empathy, Parkie35. thanks for sharing and helping me to feel that I am not alone, especially with this group as an ally! Let's stick together! This group is more pro-active than my once a month "support group." AS far as the age part, Ii am 59, dxed in '09, so I am on the "young" side of this too..
We are your community. No dog? no poop. No cat? no claw marks. No bird, again no poop. Get a fish to talk to.
I do not know where you are located, but when my 85 year old mom started a pity party (she lived with me) we took up volunteer activities. We read stories to kids at the library. We visited rest homes. We delivered Meals on Wheels. I delivered, she wrote notes of encouragement to each person every Wednesday.
My husband has experienced some of what you feel. He calls it friendly abandonment. Out of sight, out of mind. It's ok, but what will they do when they need a friendly voice on the other side of the phone?
Keep your chin up. And write as often as it helps you. Ask every question you can't get a quick answer to. The people following this forum are AMAZING. The have been there and done that.
I hope all your friends realize what they are missing and come back!!!
Do you have a PD support group yo can join?Then you would meet all new people that know exactly what you are talking about.
Don't be sad things get better.
Thanks kat! I go to a group 1x a month. It is very big and established. I am hoping to find a smaller and less "impersonal" group in mu area. Especially need to find Parkies who are musicians and share the same loss of skill with playing music.
Thanks for the morale boost, though. Things really do get better over time, don''t they?
Jane
I throw myself pity parties every now and then, just for the release. Afterwards I pick myself up and thank God I am still among the walking. I am blesses to have a small, select group of friends that assist when needed and back off when I throw them a look. I know it is very hard for them to see stumble, or fall, or watch the dystonia when I try to talk or eat, but bless them they hang in there. I feel that music is your first love and always will be, but I hope you can find a new love to take into the future.
Hi janellen i know exactly how you feel. Many of my old friends have drifted away also. I used to feel abandoned,hurt and very lonely. I have since come to the decision that they couldnt handle my parkies and so that makes it their problem not mine. Take care my friend im always here for you xxx