Posted 08 July 2013 - 12:38 PM
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.
Posted 08 July 2013 - 01:29 PM
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.
--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.
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.
Posted 08 July 2013 - 04:52 PM
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 39. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).
Posted 08 July 2013 - 08:21 PM
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.
Posted 09 July 2013 - 01:14 AM
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!
Posted 09 July 2013 - 08:15 AM
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.
Posted 09 July 2013 - 10:02 AM
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