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tremorgrrrl

Parkinson's and Dating

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When and how do you tell someone you are just getting to know about Parkinson's?

 

Advice?

 

Any and all thoughts welcome.

 

Be honest ...Tell the truth ...Because it is who you are ...True love is a commitment.

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I also think, no, correction, i KNOW, that your beauty and your stunning smile -and NOT your slurring- is all that Mr Sober will remember from your first date !

 

Was i right, or was i right ? it's like i've gone psychic or something ! time to take my magic pill...LOL!

No more first dates for you Onewingedvictory ! Keep us posted on those butterflies...

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Christie, Can I borrow your crystal ball? I have other questions....

 

Mr Sober and I are doing an "art crawl" this Friday to tour local art galleries. Should be fun. Hopefully my new not-so-effective generic PD meds will hold so that I won't be reduced to doing the zombie shuffle by evening's end.... On the other hand, adrenaline does provide something of a buffer. Maybe I'll wear high heels and claim the problem is my footwear!

 

Thanks for all your support, Everyone! I'm feeling a bit like the Carrie Bradshaw of the ParkieWorld here.

 

 

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My crystal ball tells me this is going to be a great date ! Relax, enjoy your date, and forget about PD!

 

Your comment on "Sex and the City" (i so loved this series, btw...) reminded me of a-great-Woody Allen film "Midsummer Night's Sex Comedy"...One of the characters in this film, nurce Dulcy-who has vast experience on sexual issues-LOL!!- gives advice about men to Woody Allen's wife...

-It's like swimming...It's a measured stroke. And remember, here's the key. When the sperm count is low, they won't listen to reason. but when the sperm count is high, they'll do anything you want"...LOL!

 

For those who haven't seen this film, this is another funny scene from the movie -Maxwell, Woody Allen's best friend, who is a womanizing doctor-invites his nurce Dulcy to spend a weekend in the country with him ...The punch line "we don't need separate rooms" hahaha...

 

Edited by christie

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Hello, Ms. Victory,

I wish you nothing but the very best in life and hope that your new "relationship" status will bring to you the joy that's been missing.

When I first went on a date with the woman who is now my bride, I knew nothing of Parkinson's disease and certainly could never imagine that, one day, I would find myself meeting it face to face. I was 25 and had recently started my career as a freshly minted attorney when I began to notice a "twitch" in my left hand. It was so slight and I paid little attention to it and sloughed it off as "law school fatigue" and "having to grow up-itis" but it had my brain and associated central nervous system all in awhirl. A friend's wife invited me to dinner and I accepted, a bachelor never turns down a home cooked meal especially when that bachelor is a first-year associate in a large firm, and then informed me that several others would be there, as well. One of the other guests was a co-worker of my friend's wife. Seems that they attended nursing school together. I knew from the first time I saw her that we were destined to be together. It's too bad for me that she didn't see the same picture! But, I finally persuaded her to meet me for an hour in the park. She told me that I appeared a bit too nervous and shy around her and that she was attracted to happy and confident men and that I rarely smiled and always walked with hands in pockets. However, she would like to be a friend to me since we were both somewhat new to the city. As time passed, we began to be friends on a very regular basis and I think I began to wear her down until she finally agreed that maybe I wasn't so bad after all! One evening, we attended a concert of an artist we both adore and she asked me to put my arm around her and, when I tried, I found the pain unbearable and she noticed the whince on my face but said nothing. Instead, she placed my hand in hers and held on to me for the remainder of that evening. The next day, she came to my apartment, asked me to sit, looked me square in my Irish mug, and began to ask about the "twitch" in my hand and the pain in my arm/shoulder. I didn't know how to explain any of it to her. 3 years later, we began to talk about marriage. My twitch and shoulder pain continued but didn't seem to worsen so I did nothing about it and she was reluctant to ask about it because she knew I was uncomfortable discussing it.

We've been married now for almost 11 years and I've been taking PD meds for the past 6 of those years. My original diagnosis was Parkinsonism or essential tremor with a possibility of PD. The recent DatScan just confirmed the PD diagnosis. So sorry for the ramble, there is a point in here somewhere. Yes, after the DatScan results were learned, my wife told me that she wished she had known from the beginning about what/is to come so that she could have been a better source of comfort to me.

Your postings show you to be a lovely person and I'll keep you in my thoughts and prayers that you, too, will find someone who will hold you close and will be a source of joy and comfort to you.

All the best,

Sean

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Sean

 

What a touching story; thank you! I would love to find someone as understanding and supportive as your wife is to you. I hope you shared your post with her. Yours is a true love story. And a beautiful and optimistic way to start this soft spring Friday.

 

OWV

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Christie

 

I had completely forgotten about that particular Woody Allen movie until you posted it -- too funny!

 

I was beginning to think my dates were going along this line (from my favorite movie, "Dirty Rotten Scoundrels"):

 

 

At least no one showed up with a trident -- yet!

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Sometimes I think that the whole concept of dating and re-coupling is vastly over-rated.

 

Perhaps there is more enjoyment of life and personal empowerment in being a crone or fairy godmother. Looking through books of myths and fairy tales, often some of the most powerful, interesting, and unpredictable figures are unmarried older women: the cailleach, Baba Yaga, hags, the Bakhtak, Lilith, and my favorite, from Lewis Carroll's Through the Looking-Glass, the White Queen.

 

Perhaps this week I will work on believing six impossible things before breakfast, in the manner of the White Queen. The first will be that my PD disappeared overnight in my sleep. The second will be that everyone else's PD is instantly cured too. The third is that my breakfast is being served in my very own castle -- with a turret. And the fourth is that the cook is none other than my Prince Charming. And the rest? Well, a girl's gotta have some secrets....

 

 

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OWV, how was your date? ?

 

i am sorry to say i got rid of my crystal ball before finding out about your date: this stupid thing told me i may develop parkinson's in less than 10 years...yeah, right ! LOL!

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Mr Sober (who actually does drink wine occasionally so I will re-name him Mr Nice) was a lovely date last week. We had an amusing dinner, a pleasant walk to look at some good and some atrocious art, a rousing far-ranging conversation, and then he drove me to my car and off to our respective homes we went. He was a perfect gentlemen. Later last weekend he sent me a sweet, "thinking of you," email. All very easy and pleasant.

 

We see each other again this Saturday. He is making dinner.

 

Where this is headed, I haven't a clue. One thing that was a good sign: I had a particularly bad day at work today (I think my building is cursed by some sort of demonic energy which takes possession of the weaker members of my staff from time to time and causes them to walk zombie-like through a red door to ... well, you can easily imagine... later to emerge to do the most outrageous things) and Mr Nice not only listened to my complaints, but also offered some helpful solutions, and, most importantly, sympathized with genuine concern as to how the stress must be adversely affecting my PD. Not bad. Not bad at all.

 

Christie, is the crystal ball store still in business? Because I could use one at work....

Edited by OneWingedVictory

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Fortunately, I have not had the experience of dealing with truly inept suitors* (fingers crossed), but I stumbled across this and found it quite amusing. (Warning: Some non-PG language used.)

 

It's been an exceptionally stressful week at work, my PD meds haven't been as effective as they should be, and I am fighting off something (cold? virus?), so I am feeling not at my best going into the weekend. I am hopeful that dinner with Mr Nice on Saturday will be low-key and relaxing. I'll let you know!

 

*Actually, come to think of it, I have! How quickly we (I) forget....

 

Edited by OneWingedVictory

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I'll try to give a similar experience from when I first met my husband. We went on a first date to Pizza Hut, and we were having a great time talking. As he got out his wallet to pay the bill, I saw he had a card in there saying something like "I'm not drunk - I have diabetes" and so I commented on it - hey, not a bad card to have - how can I get one? He confirmed he had juvenile diabetes, and we talked a little about it. I had no idea what it was or what it meant.

 

So as soon as I got to work the next day (I worked for an insurance company, so we had medical books in the office - this was before the Internet and the resultant ability to Google anything and everything), I looked up juvenile diabetes in the Merck Manual. Well, after reading about twenty tiny-type pages on this diagnosis, it looked like either he should be dead already at the age of 29, or he would die soon. That's what the Merck Manual does - it tells you the worst about everything! Well, I still thought he was pretty cute, so I figured I would meet him again and I quizzed him all about his diabetes - how long (age 8), how did it affect him, and so on. I was interested in him, so I set out to learn everything I could about juvenile diabetes. And so I was the one who convinced him to start using a glucometer to test his blood sugar, and several years later I was the one who bugged him enough to get on a pump instead of four shots a day. I was his support crew, and always will be.

 

Now that I have YOPD (diagnosed four months ago after 2-3 years of symptoms), he is my support crew. I do the research and then read it aloud to him (he has no choice...), and I fill him in on everything I can find - exercise, different meds, and so on, and he acts as my sounding board for different things. He sees my symptoms as an outside observer, which is helpful, as I think my face and neck are terrible with cervical dystonia, and he will be able to tell me if that's true or not - I can't see my face but he can.

 

Bottom line to the segue to this thread - I responded very positively to my date's medical condition, but it's going to depend on the person as to whether they're interested in your PD or not. There's no hard and fast rule. I have always been interested in medical things, so I found it interesting to learn about diabetes. If you're freaked by medical stuff, then I'm pretty sure you're there won't be a second date. He was nonchalant about explaining his "I'm not drunk" card, and it was a good roundabout way of introducing the subject, whether he meant to or not.

 

And in two months we will celebrate our 20th wedding anniversary, still each other's strongest support crew.

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Trudi, thank you for sharing your love story! How beautiful that you found each other and continue to refresh your bond over the years. Congratulations on your twenty years! (And welcome to our Parky club.)

 

So, drum roll please----

 

How was my Saturday night dinner date with Mr. Nice? Read on to find out:

 

To recap: Mr. Nice invited me to his house on Saturday for a relaxing evening featuring a home-cooked meal and a movie.

 

I arrived on time. (I even surprised myself with that as getting organized on the weekends requires a lot of effort -- I try to take it easy on weekends so I can refill my Parkie tank for the week ahead.). Mr. Nice had prepared a wonderful meal, I met his dogs (I love dogs!), and we had a nice relaxing conversation. But, and this is where I feel bad, I just couldn't get into the groove of the date.

 

Part of the problem (all of the problem?) was that I was so distracted by my own PD! I could not get one arm and one leg to stop vibrating. It was awful. I had taken my meds on an empty stomach before the date so I was quite sure the food had not interfered with absorption of the meds. And I didn't want to take anything extra over concern that I would end up even worse off with all sorts of dyskinesias. So there I was: paying more attention to my hand than to the conversation! Dreadful!

 

Mr. Nice knows about the PD, did some independent research on it, and even joked with me about it. I did tell him that I was having an unusually symptomatic evening and that it was driving me batty. He was very calm about the whole thing. I ended up going home not long after dinner (we had planned on watching a movie after the meal), because I could not sit still and I did not want him to see me become a great big quaking, quivering mess. Not this early in the relationship, anyway.

 

Will I see Mr. Nice again? I hope so. Saturday certainly merits a do-over on my part.

 

Assuming I see him again, it would appear that I have passed through the frog stage and am now in the part of the fairy tale where the prince engages in a quest to liberate the damsel in distress (me) from the evil spell (PD?).

 

What perils await the prince next?

 

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OWV, sometimes stress (even good stress) lessens the effectiveness of my Sinemet. There is more pressure going to a guy's home for dinner and a movie than meeting in a public place. Maybe that's all that it was. Please don't beat yourself up. It sounds like your guy took it in stride and, if he's like any other recovering alcoholic I know, he was nervous, too. His body just hasn't lost dopamine; maybe he was shaking on the inside. Might even be a conversation starter the next time you talk.

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What perils await the prince next?

 

...more dates and-why not? - a life with a beatiful, elegant, clever damsel who just happens to be a liiiiiiitle shaky....part of her charm....

 

Mr Saturday will definitely call again.

 

I think you should have stayed for that "movie"...or whatever....hahaha...

 

PS: the more you try to hide your PD the more you will stress yourself, the worse your PD will get-a vicious cycle. A "trick" might help you...try see PD as something that makes you even more special and interesting...a woman to love not only for her beauty and intellect but also for her spirit and her courage to thrive agains all odds..

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Dianne, Christie, and Luther--

 

Thanks for the support and good cheer! Your posts were a delightful confidence builder and made me smile!

 

Mr Saturday did call to check on me. I'll see him Thurs. Maybe dinner at a new pizza place.

 

Meanwhile, someone from my long lost past contacted me via Facebook and wanted to meet for coffee tomorrow. Will this be a rival for the damsel's affections? Just another frog? Or a challenge for the knight to overcome?

 

Stay tuned, my friends....

 

OWV

 

PS Luther, keep on keeping on with you and your bride. :)

 

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Hello All

 

I had coffee with Mr Hometown yesterday. He is a physician, successful, recently divorced, smart, funny, sexy ... and I just could not bring myself to tell him I have PD. That told me something important about myself: If I can't share something so fundamental to making me the person I am now and bringing me to the place I am now in, then this may not be the right person for me.

 

And that for me was a moment of profound truth.

 

Mr Saturday and I are going to leave our respective offices early today to walk our dogs and celebrate the extraordinary weather here. That will be nice.

 

Later...

 

OWV

 

 

 

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Hello All

 

I had coffee with Mr Hometown yesterday. He is a physician, successful, recently divorced, smart, funny, sexy ... and I just could not bring myself to tell him I have PD. That told me something important about myself: If I can't share something so fundamental to making me the person I am now and bringing me to the place I am now in, then this may not be the right person for me.

 

And that for me was a moment of profound truth.

 

Mr Saturday and I are going to leave our respective offices early today to walk our dogs and celebrate the extraordinary weather here. That will be nice.

 

Later...

 

OWV

Hello Ms. OWV,

By sharing this personal topic here, you are teaching so many of us so much. I believe you are truly reaching into areas of our minds and hearts that are rarely touched by allowing us to see, through your stories, how deeply this monster of a disease so envelopes our lives. How can something so beyond our control take over our lives? Why do so many of us fear sharing our "story" with others? I mean, I wouldn't expect someone with MS, cancer, depression, or many other terrible afflictions to share their thoughts with me, a stranger. But, why are so many of us so afraid to open up to even those we love, or think we love, or hope to love? Why was it so dreadful telling my parents and my closest friends? Why did it take me so long to discuss this with those at my office? Why did fear keep me from telling my co-workers until I could no longer hide it from them? Why does this damned disease allow us to think that we have something to hide...that we are somehow less of a person than someone who, as far as we know, isn't carrying around a chronic and incurable disease?

You are sharing with all of us how it does feel, to many, to bat the thought of "coming out" to and fro in our heads for fear of rejection solely due to our misfortune! Such a gift this is from you and I thank you for your willingness to share.

My hopes and prayers are with you as you continue down this road...revealing what many of us fear revealing...our humanity...our fear of the unknown...our fear of rejection based solely on something we can't help nor ever asked for...our fear of misunderstanding...our fear that we'll be pitied...our fear of being alone.

Ms. Victory...such an apt moniker...you have proven, to me at least, that you are Victorious in this fight. You've shown that we can continue on with our lives acknowledging that we're in for a fight with something that believes it cannot be beaten but insisting that the fight will go the distance and, if you want to be in our corner, you'd better be ready for a tough fight or you should just go and sit in the stands. We all need to have people who care for us in our corners. Someone who won't "throw in the towel" when the fight seems too hard.

Blessings to you, OWV,

Sean

Edited by Sean
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Synchronicity is the key here, I think...

 

No two dates, I imagine--much like PWPs--are, or will be, the same. It is very unlikely they will even be similar. Ergo, there can be, it would seem, no "cookie cutter" method for dealing with the issue of if, how, or when to disclose your illness. Perhaps, then, you might instead consider treating your PD as exactly what it is: A part--not the sum total--of the beautifully complex human being you are.

 

Then, when he (the one) comes along--as, most surely he shall--he will see your illness as but one of the many facets of the enchanting gem that is you. As the dating process unfolds, treat it much the same way any "able bodied" woman would... a thing as natural to you as your eye color or the shape of your nose! In short, "Love me, love my Parkinson's," because PD is you--at least, for the time being--after all, one never knows when the cure shall come.

 

Perhaps the question should not even be, "when do I tell?" but rather, "does this man have potential for me?" leaving PD completely out of the equation. After all, as you have seen already... the wrong men for you "out" themselves very quickly as a rule. But, when that one, the man with intestinal fortitude, an eye for possibilities, and all the ingredients that make up the perfect match for OWV comes along... everything will fall into place, the "rule book" be damned!

 

Blessings,

Kim

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Thank you for the well-wishes Sean and Kim!

 

Your two posts have been so thought-provoking. What is it about PD, as opposed to some other chronic medical conditions, that makes navigating personal relationships, particularly dating, so challenging?

 

I vacillate between thinking that if I am OK with my PD, then others will be too, and thinking that since I cannot control anyone else's thoughts about my PD, I shouldn't give two shakes about what anyone else thinks.

 

But these thoughts are too simple.

 

First of all, I am not OK with my PD. I don't like it. I have it, it is not the sum total of who I am by any stretch of the imagination, but it has changed me. I can't physically do what I used to do. I was once a competitive athlete; not now. I was once never late for anything; now I can't really predict how long it might take me to get out of the house. I once regularly worked 18 hour days; that seems impossible to me now. And these are just some of the most obvious (negative) changes.

 

At the same time, PD has changed me in many positive ways. I have learned to ask for help; to not undertake too much; to be more forgiving; to waste less time on trivialities; to celebrate joy every day. I have learned tolerance and patience. I might have learned all of this without PD, but PD was the crucible that forged these changes in my essential self.

 

So PD has been both my nemesis and my teacher. And my journey with PD, past and present, is something that I would like to talk to my dates about.

 

But then I think about what others think.

 

While I can't control the thoughts of others, I can control the data that underpins those thoughts. I don't want someone in a new relationship to look at me through the foggy glasses of past experience or prior understanding of PD. I don't want my date to compare me to MJF or Pope John Paul. I don't want my date to think of me as somehow "less" -- that I can do less, or experience less than a healthy person -- just because that was what they saw of PD on TV or in an elderly relative. I want them to see me as I am now. The last thing I want is someone's pity.

 

Maybe that is only possible if I don't say anything to my dates about my PD until after they get to know me better. But here again, those poorly-fitting glasses are going to be a problem. If I am late, my affect flat, my speech slurred, my hand shaky, and I can't walk more than a block before asking my date to slow down, without any context, I may appear to my date to be rude (late), drunk or lacking in control (slurred), nervous (shaky), in poor physical condition (slow). Any one of these "reasons" might be sufficient for my date to feel disgust and kick me to the curb. But what if my date knew I had PD? Then perhaps these behaviors would be accepted and considered unimportant.

 

So where does that leave me with Parkinson's and dating? It is a kind of chicken and egg dilemma. Do I tell my date and risk rejection? Or do I not tell my date and risk rejection?

 

A different decision for everyone. But still a decision.

 

OWV

 

PS Mr Hometown never contacted me again. Mr Saturday is still in the picture.(!)

Edited by OneWingedVictory
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PS Mr Hometown never contacted me again. Mr Saturday is still in the picture.(!)

 

There! That's the answer you are looking for...

Mr Saturday knows you have PD. Mr Hometown doesn't. Did THAT make a difference? Nope. If two people are right for each other it doesn't really matter...PD or whatever...

Women with PD have an additional advantage....Most men don't look that far ahead when they start dating someone. (the exact opposite of women!)....Like ...."what's going happen in 2-5-10 years if we are still together? Should we marry and have kids?"....No way ! It's more like..."What's going happen today or tomorrow? Should i call her again for a date? Should i invite her to my place? How long should i keep pretending i am a gentleman?" hahaha...And by the time they start thinking seriously about the future it's already too late for them to do anything...LOL!

 

PS: I couldn't agree more... If we are OK with our PD, most people will be OK with it too...The way other people see our PD, is mostly the reflection of our own attitude !

Edited by christie
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Thanks for the pep talks, Kim and Christie!

 

Yesterday evening, out of the blue, I received an email from Mr. Picture-of-Perfect Health. I hadn't spoken to him since our one and only meeting. The stated purpose of his email, he wrote, was to clean up "loose ends" from our meeting and to express regret that I had not followed up after our date by calling him. He commented that perhaps he had not been aggressive enough or was too aggressive in pursuing me and then closed by wishing me well.

 

How strange to get a break up email when I didn't know we even had a relationship to break up!

 

I guess everyone brings a degree of vulnerability and uncertainty to the table in dating. Not just those of us with a semi-hidden chronic medical condition. I replied by saying he'd been true to himself and I had not thought his actions inappropriate (his attitude and words, yes, but his actions were not the problem). And then I concluded, without any explanation, that we had not met at the right time to make it work, and that I hoped he would find the right fit. All loose ends tied up neatly in a bow.

 

I called Mr Saturday later that night to vent about my strange and stressful day at work.

 

He's been reading up on YOPD and was concerned. That was sweet. He is trying to understand my world. This is so refreshing for a change. We are going to a benefit for the arts on Saturday. A cocktail party followed by an art show and auction. He is an avid art collector. It should be interesting to see how he deals with my inevitable Saturday tardiness and fatigue -- especially after the terrible week I've had at work. Or the unfortunate costume choice if I find I can't move my arms well enough to get out of whatever garment I've put on. Or the inability to stand and hold a cocktail without spilling it.

 

All in getting to know a Parky gal!

Edited by OneWingedVictory
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