Parkinson's Movement
13,805 members12,368 posts

Lonely

Hard week,

Parkinson's is progressing and I think I've been in denial as medication masked the symptoms .

I feel like my family and friends don't understand what I'm going through but can't they see me struggling?

They're always trying to tell me what I need to do better or different as if there is a cure if only I would eat better, take supplements ect.

I feel like none of them could handle what I go through for a minute .

I think I do a good job at staying positive most the time but I've been really depressed this week.

I feel so lonely.

Even though I have people around me all the time, I fell separate, a island alone.

Parkinson's shows me how alone we all really are-

Born alone , die alone and trapped in our bodies alone.

Sometimes I feel like I'm being tortured,

I'm jealous of my friends and wish I had their problems.

Sorry to spew my negativity -

I don't feel like I have anyone to talk to -

if I said stuff like this to my friends and family they would tell me to stop feeling sorry for myself, tell me I'm being a wimp, give me a pep talk , things like "The true measure of a champion isn't what he does when he's winning but when he's on the canvas knocked out " they're all about the Tough love -

Toughlove is good but once in a while I wish somebody would try to understand the way I feel and how hard it can be.

I know that I am depressed right now and that it's a side effect of Parkinson's logically but I'm so in the darkness right now that I can't find my way out .

So I guess I have control of my actions.

I can't control how I feel or even what I think but I can control what I do and my attitude.

so one foot in front of the other, live in the now, think about all the things I have to be grateful for, do something for somebody else.

what else can I do, my only other option is to live each day feeling the way I do now.

I can't lose hope-

Feel better already, thanks for letting me put my feelings out there-

30 Replies
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lack of dopamine makes a big difference And it reflects how you feel. My emotions are fairly flat, I don't like feeling that way but there's nothing I can do about it. So hang in there.

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I am glad writing down your thoughts helped you. If none of your friends or family will sit down and let your share without giving too much direction when you need an ear to hear your fears, maybe a finding a Parkinson's friend at a Knock Out Parkinson's class or some other Parkinson's Association will give you what you need. Don't stop looking for a person or persons to empathize with you.

I try to be a good listener to my PWP spouse, but I am very guilty of giving advice(just like I did to you). Sorry! When I rattle on too much about things I want him to try, he gracefully lets me know and I shut up for a little while. He kindly puts up with my constant quest to try to help him stave off the effects of Parkinson's.

My hope is you get the emotional support you need. It is a privilege to be there for my husband and support him when he needs it, and give him a little push when he is slacking too long ;) .

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Your husband is lucky to have you and thank you for taking the time to write me, it cheered me up ❤️

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Sharron, your situation reminds me of myself and my Dad (who had PD). I tried to be his cheerleader and researcher. He would gently let me know when I was going too far (which was often).

I didn’t always “get it” in terms of how a PD person has so many variables each hour or day. The more my Dad shared specific symptoms, the more I learned and eventually understood better. I wish I’d been on this site then, as it’s a wonderful resource and community.

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How's ur dad doing?

I can relate with being a caregiver to ur Dad. My father had a stroke when I was 15 and had part of brain removed and became a paraplegic. He died of cancer three years ago. There is so much that I understand now as I'm disabled. I wish I knew then what I know now. I Think about him all the time. I miss him so much ! He taught me so much by example, he never gave up and used humor to go through a lot of stuff that most could never handle . Thx for ur message

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Joy, my father passed 2 years ago (as did my mother, who had severe RA for many years). He had a later diagnosis of a disease similar to ALS that compounded his challenges.

Our Dads sound like they had similar qualities. He taught me a great deal by example. I wish you all the best in your journey.

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Often family don't know how to deal with loved ones illness. They may be afraid to confront it head on. It sounds to me like your friends and family are well intended and trying to give you hope, but because they don't understand, they are missing the mark making things even more difficult. Maybe find the right time and place to have a more in-depth discussion with them. Maybe it'll take a few discussions to bring them around. Over time you might make some progress and it might help your feeling less isolated and alone. Otherwise, this forum and PWP support groups are a good place for you to share your feelings as you are sharing them with others who feel exactly the same.

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You are right and how can I expect others to understand when often I don't. When things are going good I can start to be in denial , that's why I get super depressed when I have a hard week as I can't pretend I don't have Parkinson.

At the end of the day I'm lucky I even have friends and family around me all the time. Even if they do drive me crazy, ha ha

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HI Joy-love-magic

I have felt and still feel what you have expressed here. I can be in bed with my wife and feel alone. You don't say how long you have had pd. For me the longer i face pd the easier it gets to except my fate. Your family means well but you are right they do not know what we go through. My first doctor gave us some advice we still use after 12 years. No one except me brings up my pd they just ask how i am doing at that moment. They talk about my pd among them but not when i am around. If people say they are sorry i have pd i just tell them it is not as bad as their bad back or knee or what ever problems they have. I know what oi am going to say sounds bad but i feel this way. I feel lucky that all i have is pd. It is the only thing i have wrong with my body. If i had anything else wrong i could not handle it. My wife of 45 years has had a head ache for all her life now that is much worse than my pd i can control my pd for the most part. Except when i had my tonsils out at age 4 i have never spent a night in the hospital. I have less than 5 colds in my life an the flu once. This being sick is new to me.

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Love ur attitude !

you bring up something I forget , everyone suffers.

All who live long enough will get sick, have pain, get weaker and die-

It's what we do with the cards we're dealt

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Sorry you're having a rough week. I sure understand "lonely" .... I've never felt so alone and scared. There are good times too, I have to keep reminding myself of that!

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Anytime ur feeling lonely, scared or even having a extra good day , I would love to hear from you 🎠 would love to talk more

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I hope you find a support group. There really is nothing like talking to other people that are going through the same thing. I know if somebody listened in on our group sometimes they would probably think we were pretty morbid as we talked about falling, cognitive dysfunction, and even suicide. But we all end up feeling greatly cheered and not alone. You are right, unless someone is living in a body with PD they really can't imagine what it feels like. It is such a full body and mind experience. Hang in there and you can always go online and complain to us.

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And I'm here for you too.

Sometimes the only thing that can get me out of depression is to be there for someone else

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Exactly the way I feel at times. I have come to realize that the only people that truly understand are those that have Parkinson’s themselves. I go through the tough love and family stuff, too. I even have medical professionals in my family, but it doesn’t matter. People are people, and until I got this dreaded disease I may not have really understood, either. I mean, one day I can do something halfway ok, and then the next day it is next to impossible to do it. How do you explain that to people? Sometimes the medicine helps. Other times, during “off” times, I can have great difficulty. I’m the kind of person who likes to be independent. I don’t like to ask anybody for help for anything. Thanks for sharing your feelings. We all need to do that. I have found that some exercise does help, even if it’s only stretching. It builds up dopamine levels, I believe. We must not lose hope. Best to you, and take care!😀

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It's like the butterfly trying to tell the Caterpillar what it's like to fly . You don't know till you know- it was a bad week but today I'm good and really all we have is now !

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The Greatest, Mohammed Ali, once said - Don't count the days, make the days count.

We all struggle, some more than others. You have more company than you realize.

Don't give up hope, I'm convinced we are very close to finding a cure.

Take care.

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Thank you so much for your positive message!

Muhammad Ali is my hero and was long 20 years before I got Parkinson's !

He also said " the true Measure of a Champion is not what he does when winning but rather what he does when he's down on his back on the canvas"

At the end of the day I am very blessed to have family & friends around all the time.

I also have faith that they are going to find a cure soon as well .

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I was living with that loneliness until I found a therapist I can really talk with. There is so much in the experience of PD, the day to day, minute to minute. I tend to hold my feelings in and not think anyone wants to know what's going on inside, but it's also a whole lot for others who are close to me to hear! I could probably share more with family/friends, but the really deep stuff I take to therapy and it helps. It's my refuge.

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I agree. My husband sees a therapist, he really didn’t want too but it has helped him tremendously. All they do is talk and he looks forward to see him now.

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Wish Mine would😉

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You are lucky to have found such good therapist.

There are how many mediocre therapist but to find somebody really connect with , that's rear!

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That's true. I do feel very lucky with this therapist.

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Had a good one but then she retired😩

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I haven't had one of those days in a while, but I sure know what it feels like! The few times I tried to talk to my sister, like telling her I'm feeling particularly stiff that day, she'll tell me how stiff she feels too, as if she could possibly be feeling the same! Or the subject gets changed very quickly! My husband gets very hurt if I tell him he can't possibly understand. He is wonderful, but you can't know what this is like unless you live it. But I have found acceptance. I realized one day "I can live a joyful life with PD, or one that I am miserable, either way I still have PD." I chose joy! Almost 10 years in, I am training to teach yoga to others, since it has helped me. It's scary sometimes, because I never know how I'm going to feel, but I just keep moving forward, and pushing! I must stay strong for my granddaughters. I want them to remember me in a normal way! Best to you!

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Love it !

Such a great message!

You are correct , it's a choice but every now and then I slip -

"When you change the way you look at things , the things you look at change "

When I stay in now I'm ok

Thx for reaching out

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Thank you Joy-love. I just crafted a response only to delete it in error. The very short version...You have made me feel less lonely and isolated so thank you and please post away! This is a marathon not a race and I do hope your week smoothes itself out.

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Feeling better thanks .

I would love to hear from you as well.

I think that we feel better when we are supporting each other .

Lose ourselves in the service of others

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You're not alone!

I'm here to listen

So pour ur guts out!!

C!

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I'm here for you too .

It means a lot to get message from someone who truly understands and when we help each other , we help our self !

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