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#1 sessie


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Posted 08 July 2013 - 12:38 PM

Okay, looking for insight.

My partner and I were at our regular gym on Saturday and he started to get slow, stiff, off. He took some Sinemet, but had to sit down and was visibly in an "off" time. Some (not all) of our friends at the gym do know that he has PD, but I think most people think PD = tremor and nothing else. Several people asked him if he was okay, if there was something wrong, etc. He kept saying he was fine, but they asked several times (because he was visibly not fine).

Afterward, he said he was really embarrassed. I said something like, "That's an awful way to feel and I'm sorry you're feeling embarrassed and I'm sorry you're feeling bad." And I told him that I am never, ever, ever embarrassed to be with him. And I said that even if he's feeling upset right now, I hope that he also knows that everyone cares about him and everyone was just concerned and that they don't really understand and they don't mean anything by it.

Do any of you ever feel embarrassed by your symptoms in public? What do you do when you feel that way? What can I say or do to help him in that kind of situation?

I usually just downplay it and would say something like "He's waiting for his medicine to kick in," "Guess it's a bad day" if someone asks me what's going on. I help him matter-of-factly if he needs help. And I meant it when I say that I'm never embarrassed. I get angered on his behalf, but never embarrassed.

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#2 OneWingedVictory


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Posted 08 July 2013 - 01:29 PM

What a great question, Sessie.

Yes, I have certainly felt embarrassed because of my PD symptoms for a variety of reasons. Usually I am embarrassed when the symptoms come on unexpectedly and I am around people who don't know what's going on, as what happened with your partner.

Examples --

--When I am "off" I can get really stiff. One time, when I was in trial, I was in the women's restroom trying to shake out my arms and shoulders when the stall door flew open and the person washing her hands saw me and said, "OMG, are you having a seizure??!!"

--Another time, also in the women's room, I inadvertently dropped all my pills on the floor. I was crawling around on my hands and knees gathering them up (those things are expensive!) when a female security guard came in and told me I couldn't shoot up in there and needed to move along.

--I can have terrible leg tremors from time to time. Once, while appearing on an TV newscast about something I was doing for me job, completely unrelated to PD, I had uncontrollable leg tremors. The sound engineer kept saying into the earpiece, "Stop kicking the desk!" I couldn't help it.

How have I handled it? As best I could.

For the "seizure" situation, I just said I was fine and the woman left. For the "junkie" situation, I told the guard I had PD and she was super helpful in assisting with the pill clean-up. For the broadcast, I didn't feel like announcing my PD to the world, so I just said something like, "This topic is one I am really passionate about. And judging from my jumping leg, even more passionate than I realized!"

My suggestion is to ask your partner how he felt about the incident at the gym and what he would like you to say or do to help him. Showing how much you care while still respecting his autonomy is a huge gift you are giving him, Sessie. As long as you continue to communicate, to respect each others' boundaries, and to treat each other as fully functioning adults (all of which it sounds like you have done in an exemplary way), you'll both be fine.

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The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.

#3 Jason



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Posted 08 July 2013 - 03:38 PM


I just wanted to chime in quickly and let you know that saying 'And I told him that I am never, ever, ever embarrassed to be with him.' is, from my perspective, the most perfect thing you could've possibly said at that moment... or any moment for that matter.

Making my wife feel embarrassed of me is a perpetual concern when we are out and about in public or with other people... Like you, she always reminds me that I could never embarrass her... and it means the world to me, b/c time and time again she's proven that they aren't just empty words. You know, that whole 'acta non verba' thing. :-)

It sounds to me as if you guys are handling things very well. From my point of view, it takes someone cut from an incredibly special cloth to be involved with a 'parky'... and it sounds to me that you are precisely that kind of person... people like you and my wife never cease to floor me, and I do not know that your importance and significance to 'us' can ever be effectively articulated.

#4 christie


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Posted 08 July 2013 - 04:52 PM

People don't know why we move slowly, why we shake, why we can't control our bodies. They don't know we have Parkinson's. They don't know young people can get it. And, guess what. They don't care to know. They have their own problems. They just look at us with ignorance and curiosity. Without knowledge there is no sympathy. Without understanding there is no respect.

Do you ever feel embarrassed because of your symptoms when you are in your neurologist's office? No. Why? Because the neurologist cares about you? No. Because the neurologist knows and understands. And that's all you need to feel at ease.

By the way, i don't think that downplaying the symptoms is always the best approach....Truth is almost comforting, at least to me! I mean i SO hate it when my friends/family/hubby tell me "You look fine", when i know i look like...you know...

Edited by christie, 08 July 2013 - 04:52 PM.

-English is not my first language !

-Aged 40. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 600mg daily) and Azilect (1mg daily).

#5 Delta


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Posted 08 July 2013 - 08:21 PM

The truth shall set you free. I have chosen to tell everyone I have PD. So WHEN I freeze, I simply say "I have Parkinson's Disease and my medicine isn't working right now. It will kick in soon." It makes me feel better and usually it makes the other person feel better. Sometimes they ask questions and I am very willing to answer them. I find that people perceive that I am in pain. When I explain that I am not in any pain again other people feel better. The key is we all have different comfort levels with our disease and with the level of information that we're willing to share. It sounds as though you both did a great job handling the situation.

I didn't even mention the most embarrassing part of my off time. I sweat like a piggy while I'm dragging my right leg(which I affectionately refer to as peg leg because it will not bend when 'off')


Edited by Delta, 09 July 2013 - 04:18 AM.

#6 zackabenie


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Posted 09 July 2013 - 01:14 AM

All the people that matter to me know what is up. Two of my girlfriends will take my hand as we walk. We even swing our arms like 6 year olds. Probably my most frustrating moment came last Christmas while shopping at Macy's. I wanted to get there around 10am as this is smack in the middle of my simunet dosage time and when my symptoms are at there least. I was in the ladies section looking for something for my mom when I noted my balance getting worse. (I had DBS surgery in June of that year, and it has made both my speech and my balance worse than pre-DBS, but the tremors are gone). Anyway, I found the much sought after gift for mom and proceeded to get on line to purchase. My speech was slurred but understandable. I made my pruchase and continued my shopping. Unbeknown to me, there were 2 ladies who were behind me in line who then proceeded to the mens department as did I, Although I continued to be unsteady on my feet I was determined to finish my shopping. Several minutes later in the next aisle over I heard one of the ladies say to the other "She must have drank her breakfast, look at her stagger all over the place." It took every ounce of self-restraint and Holiday attitude not to rip into them. I wasnt embarrased but really fu^&ing mad. Now I walk with a cane for safety reasons, hope I run into those women again.....
Joelene -
Smile every day and laugh at least once at something the PD is now causing you to do. I personally love the "left" turns that happen as I walk. The smile really works - it makes everyone worry what you have been up to!

#7 dgray001



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Posted 09 July 2013 - 08:15 AM

I get embarrassed easy, I always have. I find myself very uncomfortable when dining out. Seems like I always start twitching and I'm worried I will spill my drink or not be able to cut up my food. So far, my symptoms seem more obvious to me than anyone else and I've only gotten a few rude comments. I mostly get asked why am I shaking? To which I respond, gee, I don't know, why are you ugly? Just kidding, but I do usually just make a joke of it. I am still coming to terms with the fact that I have this "thing" and I found myself asking about a "Special Needs" class at a local horse show. Show management told me it was for anyone with a disability. I decided I wasn't ready to announce it and I will continue to show in the "regular" classes.

That being said, I know my father was embarrassed over his shaking hands and having to ask for help. The man of the house who always took care of things couldn't button his own shirt. I know it killed his soul, but NEVER was I embarrassed by him. I would quietly cut up his food in the restaurants so he wouldn't feel awkward and tried my best to help him. If someone had said something to him, I probably would've come unglued. Most people knew my dad, because he was a minister and we live in a small town - and most knew he had PD.

The rudeness and insensitivity of others never ceases to amaze me. I told my BF just the other day, I wish he could walk in my shoes, just for a day, to understand how I really feel.
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#8 sessie


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Posted 09 July 2013 - 10:02 AM

Thanks everyone. I really appreciate this forum and I really appreciate what you all have to say. It's nice to know that none of us are in this alone. :)

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