Just like a butterfly could never explain to a Caterpillar
what its like to go from an ugly worm to a flying beauty , you can't comprehend having Parkinson's until you have experience A body that betrays you.
Until you no longer can control your destiny, until you're the person that walks down the street and everybody stares, looking at you like "that poor son of a bitch, " until you experience the depression, the pain and the fear of the future, you will not get it.
I don't need you to try to make it all better.
I don't need Toughlove.
I don't need to be told about some new yogurt that will cure it.
All I want is you to listen and validate my feelings.
I know I'm very blessed with my friends and family but when you are constantly trying to fix my Parkinson's it makes me feel like you're not hearing or understanding me.
I want you to comprehend that this is a progressive disease and you cannot cure it with a vitamin or yogurt.
Toughlove is great but sometimes you just need a hug, maybe just somebody to sit and listen and just say nothing.
I know their hearts are in the right places and they don't want to except my Parkinson's anymore than I want to .
I know they're trying to give me Toughlove when they say things like "oh yeah ,pull out the Parkinson's card " implying I'm feeling sorry for myself when I am just being realistic.
If There was some supplement. Diet , Faith healer, that could cure me ,wouldn't Michael J Fox have used it by now?
I don't need you to try to fix me or make me feel better I just need you to hear me and and love me.
That being said I know that they don't understand, can't understand, that it's coming from a place of love, because no one understands until they're in your shoes.
Written by
Joy-love-magic
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It’s true it’s a very difficult disease for anyone to understand . You have good days and difficult days and I often hear well you seemed good yesterday. Yesterday really has little to do with how I feel today. The ups and downs is quite frustrating.
Do you ever feel like your family or loved ones are almost blaming you for having Parkinson's?
Like if you would just take better care of yourself or try this or that it would be better?
I know people are trying to make you feel that way but it makes me feel that way when they offer the simple solutions.
If it were that easy I'm sure Michael J Fox Muhammad Ali Linda Ronstadt and all these other people who have all the funds and resources in the world would have done it.
Ok I am a bit full of myself some times. I am sitting here watching my own vids. You have great taste in music. I still can not get over the fact that when I turn on my oldies station it is all 80s music. 60s is oldies the 80s are just yesterday. Time does become quite abstract for me so I have started not to follow it.
Thankfully no , I’m the youngest of 4 sisters., two are nurses. They understand and are supportive. So is my 86 yr old mom. I’m lucky they really love me , the hard part is knowing they suffer because of my suffering even though I try to reassure them I’m ok
Well put. Yes you will have good days and the difficult days and no one understands unless they have PD too. I’ve actually had people say to me , well at least your not going to die from PD. They just don’t get it. The person we were before has died but we go on managing our life and controlling our bodies as best we can .
I hear that I'll the time " your not gonna die from it " I love what you said & your right , we may not physically die but part of us has died already. Im constantly trying to balance being realistic about the future and living in the now.
I am the caregiver and this conversation is a reminder to me that I live alongside PD, not with it. But I am APPALLED that anyone would tell you "you're not gonna die from it". Really? I mean REALLY?
I watch my PWP disappear every day. I am not always the person I want to be for him. I hope I can remember what you said the next time I think I'm too busy to be there.
My mother and I both have PD. My mom did really well for several years, then dyskinesia set in. Until I started getting worse my dad would chastise my mom constantly about her movement. His attitude was that if she wanted to, she could stop moving. It took a long time to convince him it wasn't a choice. My older brother thought I was being dramatic until it became obvious. Like I was doing it for attention.🙄
Hi Joy. We each have a profile on this website. I tried to look up your profile but I have to admit that I do not know how to do that. I am sure we can do it but don't know how to find that out.
So relate with that , one of my best friends lives with my husband & I . She has actually told me to stop shaking , that I making her dizzy , as if I have choice ,
If I'm having a bad day & shaky she accuses me of doing something wrong , like did you take your meds? Why are so Bad today .
Are you eating sugar ?
No , I just have bad days , duh
How is your mom doing now?
How are you doing?
Is your Dad more compassionate now?
That must've been hard on you, getting Parkinson's after watching your mom with it and it also must've been difficult for your mom to have it and see you get diagnosed, I'm sorry
Beautifully expressed Joy. I feel these sentiments esp with neurosurgeons i have met, feel I'm just in their way as i trying to not take prescrip meds at moment. Appointment lasts 5 mins and they are really not interested my masseur has more empathy and care.
No one understands were we coming from thats why here is so awesome
Your Caterpillar and Butterfly analogy explains exactly how it is with me. Sometimes, I hope my Doctor understands, with his clinical assessment and professorial approach. Sometimes, I think that some in my circle of family and friends understand, but do they really. I find out, when one day, perhaps, I can go out to an event or outing, and then the next day, I'm feeling so ill with PD symptoms, that I can hardly get out of bed, let alone go anywhere, what people really think, sometimes. When asked, people are usually skeptical, and make comments like, "you were perfectly fine yesterday" or look at me like I'm just giving them an excuse. Most of them have no idea how difficult it is for me. I have found comfort in this forum, knowing that others, who have progressive PD symptoms and difficulties, understand well what I'm going through. I truly believe that only if one has experienced the difficulties of actually having progressive PD, that affects most body systems in some way, do they fully understand the implications of living and dealing with the problems it can cause. Of course, caregivers would have a good idea too. Thanks to all who have helped me in my journey of dealing with the ups and downs of having PD, in this forum. It is awesome, to be able to come to health unlocked.com and discuss with others about a problem, and having so many understand exactly what I mean and how difficult it is to deal with some aspects of living with PD.
Hi, first day on the forum. I relate well to the theme expressed here. I believe than we are stuck with PD. I have searched for the cure it is not there - yet. So how do I live with PD. Well, like most of us, I thought it would be easier if people around me 'understood' what it is like, what I go through. But that is well beyond my control. What I can control is my perception. I came to understand that to live with PD we have to manage the grieving process - shock, denial, anger, compromise and acceptance. I have tried to keep myself in the acceptance mode but I swing to the other phases regularly, especially when something new pops up. Then some PD brother told me to try unconditional acceptance. It is not easy but when there, it does no longer matter what the others perceive or not. It is working for me.
And acceptance is the answer to all my problems today, when I am disturbed it is when I find some person ,place ,thing or situation , some fact of my life unacceptable to me and I can't find serenity until I accept that person ,place ,thing or situation as it is exactly as it is supposed to be at this very moment I can find no serenity.
Your title captivated me. The words used are very explicit and expressive.
I give you a virtual hug and hope you are able to communicate your feelings to those people around you.
Maybe they should be reminded not to step on caterpillars - unless they want it to rain. (Old superstition) Or at least be told how you feel about their actions.
Is it possible that you were taught to be always nice? I know many, especially women, find it difficult to get out of that pattern, myself included.
“Being nice has the benefit of social approval and the perils of doing a lot of emotional labor and still not getting our needs met. ” Sonia Connolly
Just finished Big Brother Celibratty . Not a fan . I was struck by something Brandy said, something to the nature of I am in my mid 40s and I know I am a pain but I am to old to change. That would be death for someone with Parkinson's. We have to change .
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