Sometimes, I find myself looking at posts that I had written years ago and it helps me remember that I need to be kind to myself and patient with the progression of my Parkinson’s. This post titled “I hear voices” helped me see that my anxiety about having a Neurological condition and how I navigate the world is still relevant today. I have included the post below and how it continues to resonate with my insecurities. Next week, I will post about how I am coping with the voices in my head now having been diagnosed with Parkinson’s disease for over 11 years. Be sure you’ve subscribed to my blog to keep up with future posts.
I hear voices
I believe the first step is admitting you have a problem, then you can work on overcoming that issue. So there it is, out on the table…..voices in my head. The voices I hear are not cheerful and they don’t say things like, “Unicorns are real” or “Chocolate helps you lose weight”. But they also are not Field of Dreams creepy whispering, “If you build it, they will come.”
I first noticed these voices after I was diagnosed with Parkinson’s disease. One of my hobbies was being active and trying new things that challenged me. I loved going to the gym almost every day and the days I didn’t go, I would go to yoga or a dance class. But one day when I cruised on over to the local “24 Hour Fitness” to wail on my pecs for a while, I noticed things began to change. As I walked to the front door of the gym, I extended my arm to grab the handle. The moment my skin touched the door, I had a wave of emotion came over me. I felt awkward and out-of-place in the familiar gym that I had logged many tiresome hours in. Then it happened, a little voice in my head said, “Everyone is looking at you.”
I tried to calm that voice in my head by telling myself encouraging words, but it never faded. As months went by, the voices became more frequent and not just at the gym. I would be at the grocery store, and a voice would tell me, “Try to look normal! Swing your arm when you walk, don’t hunch over, and smile.” The voices were coming from a deep place within me, where I hide my insecurities. I began to doubt myself, with activities that came with such ease in the past. Parkinson’s takes so much and leaves you only with doubt. Was I the same person? Where did my confidence go? Who would want me now? I guess you could say, I had to redefine who I was.
Now after having Parkinson’s disease for years, it is still a daily struggle to keep the voices to a whisper. I could be having a conversation with a close friend who knows I am a Parkie, but I see them look down at my hand, and a voice yells, “Hold still, your too dyskinetic, they are looking at your PD!” Then I will try some tactical move like sitting on my hand…which never works and makes me look like more of a dodo bird then if I would just roll with it.
Cognitive Dissonance
This is part of the non-motor symptoms of Parkinson’s…..no, not looking like a dodo bird, but to create cognitive dissonance. I was holding onto multiple conflicting beliefs simultaneously. I believe that I am athletic, caring, and pretty, but now that I have Parkinson’s, I also believe that I am fluffy, sometimes grouchy, and having a bad hair year. Talk about going crazy! This conflict in my head causes emotional distress and there is no cure. But there are tools I can use to lessen the confusion. Now when I go to the gym, I wear a ball cap. This helps me feel a little hidden so I can focus on my work out and not so concerned about what others are thinking. I keep reminding myself that everyone else is busy with their own drama, they are not looking at me.
Not only is Parkinson’s impacting my movement, but it is also messing with my concept of self. I know the voices will keep on trying to intimidate me, but the next time they say, “You were beautiful before you got diagnosed, now look at you.” I will yell back, “Knock it off! I am and always will be beautiful. No disease will take that away from me.” Then I realize I am actually answering the voices in my head…….ok, so maybe I am a little crazy, but aren’t we all?
You and your reruns Smitty. 😜 I do find it odd that the voices never say anything nice. Your butt looked great in those jeans today or that joke you told at dinner was hilarious. It’s always something mean. My voices keep telling me to kill myself. I don’t know why? I’m cute and fun. 🤷🏻♂️ Nevertheless the voice inside my head wants me to check out of the Earth hotel. I don’t have a low self esteem from having health problems like most. If anything it’s strengthened my self worth. The only time I get annoyed is when I can’t find my words or flat out forget things in the middle of a conversation with friends. Most of the time I just tell the voice inside my head to shut the fuck up… I just need to remember to do that inside my head too. In totally unrelated news, I’ve been banned from Target.
Be good, Smitty.
John,
Banned from Target… I bet there’s a story there!
Ha! It was a joke Smitty. The punchline was I was banned from Target. The joke was I screamed shut the fuck up out loud instead of in my head. Oh dear, we’re going to have to work on that sense of humor Smitty. That would suck to be banned. I love their food court popcorn.
When I was diagnosed with PD in 2007 at the age of 29 there was nobody else with the disease in my area, around my age, and I felt so alone. It makes me so happy to hear that you guys sit on your hands too!!! The new people being diagnosed don’t know how lucky that they are to have a resource like this.
It has taken me a long time to learn to be comfortable in my own skin. What others think doesn’t matter. That’s why I don’t waste my precious time on people who don’t contribute to my life in a positive way. Thank you Allison for teaching me that.
Hats work wonders for bad hair days and a little mascara can make you feel like a million bucks. I just can’t get dressed until I put mine on because it never fails, I get an involuntary movement when I’m putting it on and I end up with it on my shirt and counter or floor. I poked my eyes with the wand alot too.
This disease makes me feel ugly some days. If only we could take off the horrid mask it makes us have. I’m super conscious of my teeth because I clench them and have a jaw tremor which has left them chipped and wore down.
I miss my high heels…
Lj,
I miss heels too!! There’s nothing better than being able to strut down the catwalk… or just the sidewalk. Thank you for sharing your thoughts!
Oh sweet friend! As the wife of a Parkie (and a wife who has her own issues, including teaching special ed and juts losing her mother) I can tell you…you are as OK as anyone, We ALL have issues. My favorite quote is ( pretty sure I said it!) “We al have a Cross to bear, it is how we handle our cross”.Some days I do ok…others…I need to hide.
Jenny,
What a nice quote! Thank you for sharing! Miss you guys!
You nailed it!
You put how I feel into the words I can’t . Thank You!
I feel this way often. I try and leave my ego at the door but it’s difficult at times. Thanks for sharing!
I’m so happy to know that I’m not the only one!!
It’s OK to talk to yourself (I do it all the time, and I don’t have Parkinson’s)
It’s also OK to answer yourself too.
You might want to start worrying if you start saying….Huh?
I think that when people see someone who has a “real” medical/physical problem are thinking….maybe what “I” think is a problem in my life isn’t really a problem after all.
I’m humbled by people I meet everyday. Sometimes it can be hard to step out of our own challenges and see those around us. Thanks for the reminder.
I hear the same words in my head,but I don’t hear them out loud … I’m not that crazy … yet … I don’t think ….? Oh, who am I kidding, I am as crazy as you are, and I have sat on my hands too. For me, sitting on my hands eases the pain of dyskinesia a little bit. When I feel awkward because of my symptoms, I tell everybody that I have Parkinson’s. I usually end up talking to strangers for hours, or maybe even minutes, to answer their questions and I make jokes about it, and then another stranger thinks I am amazing. It makes up for the treatment that I get from Hubby and the kids when I get home. They don’t even laugh at my jokes anymore.
Men with Parkinson’s have it so easy. Michael J. Fox has a bit about how much easier it is to brush his teeth when your hands are tremoring anyway. I challenge men with Parkinson’s to put on mascara. Hubby asks why I need to wear make-up anyway. I love to hear strangers say “Well, you are looking beautiful!” I don’t get that at home. I just get comments about how ice cream does not have medicinal properties. Case in point – unlike you, I let the pain decide that we are not going to the gym anymore, and I have gained almost a hundred pounds since I began to listen to the pain.
You look fabulous, by the way!1 Judging by your profile pic anyway, it would appear that you have mastered the art of putting on mascara with Parkinsonian hands.
Sounds like you know where the voices are coming from and they aren’t in your head. Keep wearing make-up, get your hair done or wear a sassy outfit… Whatever makes you feel beautiful is what’s important. Thanks for the comment!
Karen,
Last February I went to my ortho for hip pain (I was falling alot) and he prescribed me Mobic 15mg for the pain and PT. Because of the covid I was unable to go to PT but the Mobic has been a blessing to me for my PD joint pain. I noticed after I started taking it I woke up feeling less stiff and had so much more energy. When my hip started feeling better I quit taking it but my joints went back to the way they were. So I did some research and found that some research had been done on using Mobic for PD. I lowered my dose to 7.5mg and now take it every night. I don’t know if this will help you but it’s worth a try.
Your husband and kids better be glad they don’t live with me. If I could lend you some of my sarcasm and “kiss my a*s” attitude I would. Chin up!
Perky Parkie, who gives a fiddlers fart what other people think or see? Maybe instead of sitting on your hands, do something like cuddle your grandchild or watch her face as your tremor gently rocks her to sleep.
Good point about the fiddler’s fart! Thanks for the comment!
This was an excellent post for me. I have listened to those voices and have fallen victim to them and have developed social anxiety. It’s a hard road back when you let those negative voices define who you are and let them break you. I’m on the road back though and with a lot of hard work I’m replacing the negative voices with positive voices and I am no longer letting PD define who I am.
I am so glad to hear from you Denise! Social anxiety has become huge for me and I am out in the community being an advocate! There are times that it is so hard to get out there, but then I remember that people know that I have PD and to show my symptoms is showing who I really am. I have Parkinson’s and pretending that I don’t could send the message that we should be ashamed of something we have very little control of. Thank you for your comment. Keep filling that glass!
Good post! I hear those voices too. They are based on comparing the person you are now to some illusionary perfect version of yourself. But you can only be who you are now, Parkies and all.
I’ve learnt recently that those voices are quieter if you care less about the symptoms; they neither define or break you (see http://dialoguewithdisability.blogspot.co.uk/2013/05/i-dont-care-about-my-symptoms.html)
So true Jonathan, but sometimes acceptance can be the most challenging! We are our worst critic, eh? Thank you for the comment!
You girls are SO complicated. But you know in your gut that a person who is Kardashian-petty and might judge your “look” is not someone you care about anyway. We all get that grainy picture look as time goes by. Being so tuned into your body, you observe change more acutely. But the eyes don’t lie… internal beauty shines through. Tell those ugly voices to bugger off!
Eyes don’t lie! They say much about a person and their inner beauty. Thanks for the comment! I’m telling those voices to bugger off right now!
Great post, Perky – I think many of us hear the same voices. The challenge is to listen to the ones that say the right things 🙂
Good point! We just have to be knowledgeable about these voices and believe that Parkinson’s does not define us, but it can change us. Thank you for the comment.
The answer to your question is that we all deal with the inner narrative. Stuff arrives in conscious mind and it must be reconciled. Humans do this. But, when the presentation of ‘value for your actions’ does not work properly, as in PD, then actions change which in turn change the narrative. With work we can control this to some degree, but it is a challenge, as you point out.
So true Pete! One other challenge that Parkinson’s puts on us! Blah!
And here I thought I was the only person who heard voices….and I knew I was for sure the only person who sat on my hands.
Ha! You have learned the great tactic of sitting on your hands! Thanks for the comment! It is nice to know I am not the only one who hears voices.
Great Posts from everyone I too sit on my hands and worry about how I look = I also wear makeup and it makes me feel better about myself so I will keep doing it as long as I can and wear cute clothes too!! How you look directly affects how you feel!!!!