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Sometimes I Want to Disappear

I think I’ve had Parkinson’s for a long time. I was called grace because I couldn’t stand on my two-feet. Constantly falling, leg weakness, tremors, learning disabilities, always in pain. But doctors could never figure it out.

I finally went to neurologist, and was diagnosed with Parkinson’s disease over two and a 2 1/2 years ago. Since I’ve been watching my life pass me by. I’ve read that you don’t have pain with Parkinson’s. That’s hogwash because not a million people are wrong.

Lifestyle changes

Living with Parkinson’s has changed my whole lifestyle. First, it was tremors then stiffness mostly in my back and neck. Doctor’s were confused. For 5 years, I kept asking doctors what was wrong with me. Having so much pain I had cortisone injections one after another.

It’s difficult everyday just trying to get up out of bed, getting dressed and even trying to eat. Most importantly, trying not to fall.

I used to be really outgoing and on the go. I was a photographer but Parkinson’s hindered that. I live with fear of falling. Because I’m so off balanced in mind and body. I’ve fallen so many times, but I’m afraid the next fall will be lethal. Just recently, I broke my wrist in three places and was put in a rehab home. I called it Alcatraz myself because everybody was so mean. Every time I got a meal there was always something that was hard for me to open, and they didn’t offer to do that so most of the time I didn’t eat. I had to wait long time after pushing the alert to go potty or hope for some pain medication. I could have been having a heart attack and they wouldn’t know it. I lost 10 lbs within 2 1/2 weeks while there.

I recently read an article on bad rehabs in the US. Believe it or not this place was on the top list, but not surprising.

Relationship changes

Another depressing thing that happens when you have Parkinson’s is you start losing relationships. Some people are uncomfortable around you. They don’t know what Parkinson’s is and it makes them them uncomfortable. Even my family doesn’t understand me. Having dementia is difficult because sometimes I can’t say the right words or find the right words to say and they come out wrong. So I say things that I don’t intend to say and they get upset.. My Son who is supposed to be my caregiver has abandoned me. Parkinson’s puts a strain on relationships. I try really hard, but I can’t help it with this stupid disease. Sometimes I just wish I could disappear because I don’t feel like I belong anymore.

I wish I could find a friend that would understand me and willing to listen, but you can’t find those hardly anymore so you’re alone.

All I can do is take one day at a time and hope a miracle happens and people will listen to me and understand me and not back away.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • sebastiansnana
    3 weeks ago

    Deer Smilingface,

    I’ve been a member for quite some time but today is the first time I’ve gone on here and actually read someone’s post and yours is my first. I feel that was not a mistake. You would think that post was written by me! Your problems are so much like my own and my situation. I’ve held off getting on these boards because I can no longer type accurately and the voice recognition software massacres my speech and quite honestly, I don’t have the energy for it. But I feel like it’s important that I talk with others who understand.

    I can so relate to everything that you’re saying because every bit of it applies to me. I too have had people who’ve stopped inviting me anywhere out of embarrassment of being seen in public with me falling, stumbling, dropping things, turning over drinks or even worse, having a dyskinetic episode. I have been told on more than one occasion to “Straighten up, or be still. They’re going to think you’re drunk”. They don’t understand the complexity of the disease and how very different the symptoms can be from day-to-day or even minute-to-minute. They don’t understand why you can do something one minute and you can’t the next. Why you have to cancel plans at the last minute. Why you often have days on end where you can barely function. They don’t understand the changes PD can make in your personality.

    Like you, I used to be very outgoing and very social. Now I rarely go anywhere other than the doctor. When I do try to go anywhere, I get wiped out just trying to get ready to go. As you said just getting out of bed is difficult and then trying to get through a shower?! You would think that when they see how you’ve totally withdrawn from getting involved in the activities that you once loved, they would understand just what an impact PD makes on you.

    I’m in a nursing home now due to other medical issues in addition to the Parkinson’s. I find that even doctors, nurses, CNA’s and home health aides don’t have a clue just what this disease can do to you and how much it varies from patient to patient.
    I get so tired of being compared to someone else they knew with Parkinson’s. A CNA here argued with me about the way Levodopa works. I told her I was having a bad off period and drastically needed my next dose. She told me “That’s not the way it works. You won’t start to feel better just because I give you the next dose. I went to school for it”. My response was that I had been taking it for 7+ years and I knew how it worked for me. I have repeatedly tried to to tell them how important it was that I get my Levodopa as scheduled, every 6 hours but they don’t seem to realize I don’t care how important it is. They have given it to me as close as 3 hours apart and as many as 11 hours apart. They even tried to give me my next dose an hour and a half after my last. They don’t understand on and off periods. I’ve been shoved into bed when I’ve had a freezing episode and they got impatient waiting for me. I’ve been told to “hurry up” when experiencing bradykinesia. They don’t understand the fluctuations in blood pressure.

    And the way you spoke about the treatment in the nursing home or rehab! Girl, I could tell you so many stories about these places and just how little they do know and how patients can be treated. I could go on and on but this is much too long as it is. I tend to be very verbose and get carried away. By the way, excuse anything that doesn’t make sense or any typos because I don’t always catch the mistakes that the speech recognition software makes.

    My sons have also all but abandoned me because they don’t understand the complexity of the disease and they don’t understand the personality changes. I’m still basically myself. Just not as positive and not quite as careful with my words sometimes. Not saying that I say anything bad or mean, just not the same way I used to. I’m not quite as diplomatic. I used to be so passive and now I’m a little bit more outspoken. I don’t smile nearly as much and I never look I’m having a good time. The right side of my face can be kind of droopy at times.

    So sorry to make this so long can we will try my best not to do it in the future. I also apologize to anyone reading this about how I seem to ramble on and how disjointed this must sound. I just have a hard time these days letting my thoughts flow and communicating with people. But I just wanted to say I could have been the one writing that post that you did. I thought I was the only one going through those particular types of problems. I hope the situation gets better for you and know that you will be in my prayers.

  • Smilingface author
    3 weeks ago

    Yes we sound similar. Thank you for sharing. I do hope it gets better for me for of us.

  • MaryBee
    3 weeks ago

    I believe your in the right place to make connections. I think if you can Dancing would be a great outlet. I’m sorry it’s difficult to understand unless you yourself have it. I still have a hard time understanding it with my friend. Every day you never know how your going feel he says. Doors will open and people will walk through it that will make everlasting friends.

  • Jackie V. Collins
    3 weeks ago

    And, you are not alone, either, my friend. My Husband of 12 years departed from this life and entered into a Glorious with THE FATHER on Friday, December 13, 2019. Yes, just about two weeks ago. He suffered a massive cardiac arrest due to advanced [stage], fast progressing Lewy-Body Parkinson’s Disease. He was only 54 and only been diagnosed with PD since 2018. He had bee hospitalized for 2 months for acute respiratory failure caused by a collapsed lower right lung lobe. He came home with a trache tube and a peg tube and, through ever achievenent and set back then bounce back, my Husband never complained. All of these problems were the result of LBPD. But, I love/loved my Husband very much and, because He is at Peace, I have peace. A 54 years old man, who had never had a serious illness or been hospitalized, a 30+year veteran of law enforcement, a Great Man Of GOD, Valor and Honor, a Wonderful Christian Husband and Father and friend to everyone who met him – “Well Done My Good and Faithful Servant” – Well done!

  • Smilingface author
    2 weeks ago

    Im glad you found peace. Thank you.

  • TerryB
    3 weeks ago

    My dear “smilingface”
    You are not alone anymore. I am here and I know just what you are going through as I myself have been dealing with this disease for years myself.
    I have pain in my knees and sometimes I fall, but you didn’t hear me say that…
    I wish there was a place where we could go and people could feel what we have to deal with on a day to day basis.
    Feel free to send me a message on what you are doing or dealing with from time to time.
    Remember that you are not alone anymore.

  • Smilingface author
    2 weeks ago

    Thank you. Hearing from others and their stories gives me peace knowing im not alone. Im still have tremendous knee pain. Praying for A knee replacement. Lately ive having a hard time just getting out of bed. I struggle to keep myself from falling to the floor cause i know i want be able to get up. That’s called fear. Thank you for your reply.

  • stuart
    3 weeks ago

    Hello Terry I can fully understand how you feel
    On the onset of the condition I was at a terrible low
    However I decided to look on the illness as a nuisance and adopted a more positive feeling
    I told people how it affected me. I aĺso designed a t shirt. Wording our gaze gets fixed. We stumble when we walk. Speech gets slurred as we talk. People stare and think we’ve had too much to drink
    No we are some of the ones with Parkinson s
    These words are on the back of the shirt
    Don’t give up

  • bobaleen
    3 weeks ago

    Thanks for your words of support

    Bobaleen.

  • PRChic
    3 weeks ago

    Thank you for sharing TerryB. I’m excited to start Tai chi next month!! Have a Blessed pain free day
    PRChic

  • TerryB
    3 weeks ago

    My dear friend PRChic I am so happy to hear you are excited for this Tai chi group. I have been working with this exercise work out for a number of years now myself and I can tell you that it will help you in so many ways. You go get’em. Happy New Year my friend.

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