Sitting in the shadows of my eco-friendly Prius, I scan the parking lot for any sign of life. Out of the corner of my eye, I see movement. A man walking with his head down, looking very suspicious shifts his gaze towards me. I hold my breath and hunker down. The figure slowly passes me by… whoa, that was too close for comfort. I regain my focus. I must somehow get out of my car, climb up the stairs and enter the building… all without being seen. The task at hand is nearly impossible, but I have traveled too far to turn around now.
I cautiously open my door while scanning the terrain for any potential threats. The perimeter is secure. I have been preparing for this moment. I jump out of the car like a tiger, and begin to run. “Go, Go, Go!” I reach the door, grab the handle, throw it open and step inside. A woman is standing in front of me and says, “Back again?” with a giggle. Sheepishly I respond, “Yeah, do you mind?” As I turn my back to her, to expose my unzipped dress. This is my single life… A hot date with the manager at my apartment complex to help me get outfitted, while trying not to get caught with my dress down.
Being single and dating is hard enough without throwing a neurodegenerative condition in the mix. I mean, seriously people, it’s challenging to find someone who you connect with, let alone finding someone who is worth the effort of shaving your legs on a Friday night. Whether you are having a casual dinner or hitting “da club” for a night of dancing, Parkinson’s disease doesn’t take reservations and can be unpredictable. So seeing as I am single-and-ready-to-mingle, I thought I might answer some of the questions that come to mind when trying to date with Parkinson’s disease.
1. Will your date notice your symptoms?
That depends on how much your Parkinson’s impacts your body. I have referred to us Parkies as little snowflakes, we are all unique and no two are the same. So while I don’t have a tremor, my Dyskinesia can be a challenge to hide. We shouldn’t have to worry about making other people feel comfortable about the things that we can’t change.
2. Should you tell them you have Parkinson’s disease? If so, when?
Absolutely yes! Don’t waste time on someone who will not accept you. Parkinson’s is apart of you. You’re a super-fox and anyone who cannot see past the disease, doesn’t deserve your time. When to tell your date? That is completely up to you and what feels right. Probably best to pace yourself… or you could lay it all on the line… “Thank you for joining me for dinner, but before we begin, I wanted to tell you that I almost always run late, I will eat food off your plate, I will steal the sheets, and all of your chocolate be gone. Oh, I almost forgot, I also have Parkinson’s disease… are you game?”
3. What should you wear?
I know many ladies with Parkinson’s disease that struggle with the fact that they can’t wear heels anymore. Welcome to 2020 gals! Flats are in! Get a cute pair of True Religion Jeans, get your hair did and buy a new lipstick color… Your date will be a smitten kitten and you will feel like a sexy goddess. Ok, so maybe a goddess that needs Sinemet! Don’t forget to throw some medication in that adorable clutch purse of yours.
4. What if they don’t ask you on a second date?
Try not to feel bad about it. Dating is just that… dating! It’s trying on different partners to see what might be a good fit for your life. Don’t give up! You’re not somehow tainted because you have Parkinson’s disease. You pick yourself up and get back out there super-fox, because in the end, you deserve love.
I come from the other end of the spectrum. it’s 2009, beautiful day in May, no care in the world except PLEASE DON’T RAIN!!! That’s the day I got married….28 and not a worry in the world getting ready to live my “happily ever after”. Then July 2010 hits, my father dies at 54 from COPD/Congestive Heart Failure (all his fault and choices). I’d been mentally preparing. Then September 2010 hits me like a truck. I all of a sudden have this social anxiety, I had my 1st panic attack, and I started on anti-depressants/anxiety meds and a Benzo for the bad moments. I then started with the slight tremor in my right leg, Dystonia in my right foot, and REM sleep disorder. After a year of trying different meds and still having the symptoms my PCP decided let’s stop the meds, you’re doing well, and you still have your Benzo if you really need something. Chalked up the symptoms to the meds and they should go away by not taking them anymore. 3 months later still having same symptoms. Start seeing a neurologist- could be PD but you’re female and young, no meds yet because symptoms are manageable. Fast forward November 2014 I’m annoyed by the symptoms and now want NEED answers. Neurologist sends to Movement Disorder Neurologist and right away at 33 years old I’m officially diagnosed with Parkinson’s. 35 years old deliver a healthy, beautiful baby girl. Great pregnancy and 1st year with her. Then slowly start going downhill over next year to her 2nd birthday, then really go downhill leading to 3rd birthday (in May as well), and then May 2019 to October 2019 terrible with Dyskinesias, Dystonia still really bad in right foot/ankle, right hand and arm stiffness, both knees down stiff. DBS in October 2019 and programming is still a work in progress. My point is my husband has been present throughout this entire life changing situation. If you are dating be upfront, don’t waste your time…..it’s exhausting! Find someone who truly wants to understand PD and the differences and can handle it. There are days I wonder where my marriage is heading…it’s hard to live with as a caregiver and a patient. But don’t sell yourself short! If you can find a partner who cares and wants to do life together then go for it!!!!
Shannan,
Great message… thank you for sharing your journey… fears and all.
Hi – what a great post! Currently flat on my back in hospital and also wheelchair bound! You have inspired me me to get up and go( which had got up and gone!)and embrace life when I am vertical again! Love Janni XXX
Janni,
What great news. Keep on moving!
That was creepy seeing my comment from last year. So much has changed! I can live with a girl that has Parkinson’s but you can’t just go grabbing food off of a guy’s plate. You each pick something that sounds appealing and half it. Problem solved. Happily ever after. Y’all name your first dog after me.
Ha! Maybe that is why I’m still single… it’s my rude table manners! Problem solved.
I blame the parents. 😂 We need to find you a guy that can cook too. Fish that looks like chicken isn’t going to cut it. 🐟 🐓 🤷🏻♂️
Hey, don’t hate on my chickenish dinner.
Thank you for this! It’s a frightening enough proposition without PD….
The last 4 “relationships” I’ve had date back to the year 2001. 2 of the girls were crazy, 1 I said “I do to”, and 1 fizzled out. The last time I hit on a girl was in a grocery store in the early 2000’s. We were in the yogurt section and she smiled at me. I smiled at her. The words “lots of choices, huh?” came out of my mouth. Yeah, she left faster than the girl who found out about Chandler Bing’s 3rd nipple. Since then dating became swiping left or right(which one is good is anyone’s guess), and that’s before you get to the elephant in the room. You nailed it on the head…finding someone you’d want to roll over and see everyday is hard enough without throwing PD in the mix. What you would/are do/doing and what I would do are completely different. I would lie through my teeth for the chance at happiness. Better my amazingness for a good 15-20 years if you’re a YOPD’er than some healthy jerk who will treat you like crap. But that’s just me…and I’m probably a crazy ex on someone else’s list. 🤷🏻♂️😂
John, interesting way of viewing relationships. I wonder if it would work to have a dating site for people faced with medical challenges…. but then again, who knows if that would entice people? Thanks for sharing!
Not to be a cynic but I feel like enough of us would end up being preyed upon. I don’t have anything of financial gain to offer so I wouldn’t be worried about it myself but yeah. ‘shrug’.
Jason, that is always a possibility. There are some not very nice people out there.
There’s no doubt to my mind ‘that’ would happen. I’m not saying on a large scale but the amount of predators in this day and age is insane, especially on the likes of POF. I’ve thought about making a Parkinson’s only dating site but it’s a ton of work and I don’t have the resources to get it off the ground. Dating site code is available to buy. I have the wherewithal (still, thankfully) to pull something like that off but the $ is what stops me. I have other irons in the fire and if I ever have the money to get it up and running with enough left to ‘get the word out’, I may just fire a site like that up. In my eyes all it would have to do is pay for itself and just a little (enough) to pay for my time keeping it going. I wouldn’t be looking to get rich from it.. I just think it would be very beneficial for people like ourselves. We’ll see what happens. 🙂
Jason,
That is great! Hopefully, you can get it up and running one day!
Why not? They have them for farmers. Have you seen that? 😂 You don’t have to be lonely at ParkiesOnly.com 😂 I’ve noticed 3 things about Parkies. 1. They support each other. 2. They are mean to each other. 3. Parkies are horny for each other. Don’t @ me, you know it’s true. It could be like that movie, I can’t think of the name…ugh…it’s with Rachel McAdams and Ryan Gosling. Anyhoo, they die in each other’s arms at the end. 😢 Shut up I’m not crying, you’re crying. Instead of dying it would be two Parkies freezing in bed and staring at each other, talking, and falling in love. Ehh, maybe back to the drawing board. The yogurt section seems more promising. 🤷🏻♂️
What about sex and PD? Are there Parkinsons factors in physical intimacy?
GJM, Great question! There is a psychological aspect of Parkinson’s disease, such as drooling, lack of facial expressions, distorted view of self, fear of performance, etc. But as for the physical act of sex, I have heard of Parkies having loss of libido, (except for some dopamine agonist, which can cause hyper-sexuality) lack of lubrication or erectile dysfunction. Also, many Parkies are on anti-depressant medications which can cause weight gain, inability to ejaculate. Hopefully, you feel comfortable to discuss your fears with your partner and Neurologist. Then you can feel comfortable exploring what obstacles you need to overcome. Good Luck!
Does anybody feel they don’t want to date, because they don’t want to burden or hold anyone back. I feel like I would be making excuses all the time, and it’s a lot of sacrifice to ask someone. My wife left me because she wasn’t up for the journey and didn’t want to be a caretaker. I have kids, my biggest fear is holding someone back from their amazing potential. I have accepted, I think, that I can’t put someone through the pain, and I wouldn’t wish this experience on them. I was diagnosed at 35 and the disease is embarrassing enough for me. I just can’t fathom asking someone to join me on a path I wouldn’t wish on anyone
I can relate! It’s a lot to ask someone to take on Parkison’s, but I believe I still have a lot of love to give and I do meet someone… you’ve laid all the cards on the table. A burden is something that is placed on you, not something you choose.
It’s a tough call, for sure. I have this but also was ‘blessed’ (sarcasm) to watch my father die from it for over a decade. It’s a really f*cked up thing, as I’m sure we all know. I’ve had the symptoms of this for a long time but was finally diagnosed in 2014. I had already decided that I wasn’t going to date anybody after a relationship ended in 2012. Now it’s 2018 and I’m six years in without a date nor sex. Part of this is because of the Parkinson’s but the bigger part is that dating (to me) just sucks. In a perfect world and with the exact right partner? I’d be all for it. Love is a great thing.. but with everything, I just won’t sacrifice or play any games. That said.. I think I would need a partner that I felt comfortable with them knowing what this was going to look like moving forward.. all of it. After watching my father and having that complete destroy me.. I don’t think I could put anybody through that, again.. unless I was very confident they knew what they were signing up for. I’m not shy about how messed up this disease is. I think for me, and especially with ‘all’ of the pain I’ve had to deal with in my life.. I definitely wouldn’t be opposed to a partner leaving me, at all. I kind of wonder, even though I know it’s messed up, if when the time comes and I do meet a woman that I could be with.. if I wouldn’t just give her that out from the beginning. I don’t know the answer to any of this and am just sharing my twisted view. I also never know if it makes any sense or not to anybody but me. Lol. Having a brain disease sucks……………. Bless you all <3
You said it… having a brain disease sucks. Dating is even difficult without having a degenerative disease. Thank you for your comment!
Hi All- I met a man who I was interested in, met him sort of thru my work. We crossed paths again and again, always with a friendly hello, maybe some brief conversation but didn’t date, because he’s married. And… because he’s married, we definitely never got “too” friendly. He has Parkinson’s, I learned the day I met him after a yoga class. The reason I didn’t date him is he’s married… _not_ his Parkinson’s. – Elizabeth
I could use some help here. I’ve recently (within the last month) started dating an amazing man, who happens to have Parkinson’s. I’ve known him for a few years and we’ve recently come to know each other on an intimate level. What advice can I get on how to make him feel better emotionally? I have a background in healthcare and I knew about the Parkinson’s beforehand. He is very self conscious about his symptoms and where the disease will eventually lead. He’s also quite a bit older than I am with early onset. The symptoms really don’t bother me like he thinks they do. I care about him deeply and I see him before anything else. I need any tips I can get to help better understand and ease his mind.
Thanks in advance!
Jory, You sound like a lovely person to see past his Parkinson’s. The only thing that I can recommend is showing him and reassuring him that his Parkinson’s symptoms doesn’t bother you. You don’t see his condition as a burden… because a burden is something that is placed on you, not something you choose. You choose him…. I wish you two a happy holiday!
Thank you! You as well 😊 I’m actually headed to see him this week for New Years! Eek!
Good Luck!!!
Hi Allison. Have you ever considered dating someone who has PD too? Rather than having to explain what you deal with everyday to someone who may not care to be burdened by a parkie, another parkie would understand fully . Besides imagine how much fun it would be going out dancing if one of you is going through dyskinesia while the other is completely frozen up. You wouldn’t know whether to slow dance or to do the quick step. If you ever ran out of sinemet you can borrow from each other. He would completely understand days when you don’t feel like doing anything because he goes through the same swings. For the times when you don’t smile because your face muscles decide not to work today wouldn’t upset another Parkie. You wouldn’t have to worry about offending your date by not eating when your dyskinesia is so bad that swallowing each bite of food is a challenge of whether or not this would be the night where you bite another hole in your cheek or cough up the food because your throat decides it doesn’t want to swallow tonight.
The benefits would outweigh the risk of reaching outside our parkie world to the world of people who either don’t understand or don’t want to be burdened with a person experiencing a degenerative neurological disorder.
I wonder if one of those dating websites like Match would sponsor a group of Parkies to form our own dating site. It might be as fun as a dinner out with my early onset parkie’s support group monthly meeting.
I hope that you were able to smile while reading this. My face has been frozen up since lunch so when my sinemit decides to kick in I may be able to laugh
I’ve never set boundaries on who I date. I need to have chemistry… PD or not.
To be or not to be thats the question
What a sweet love story. Wishing you both the best. Thank you for sharing!
i have pd for20 years
last year i had the DBS Stimulation.
Anyone else have done the DBS please write your coments
Here are the blogs that I have written about my experience with Deep Brain Stimulation surgery. Hope this helps! https://www.parkinsonsinbalance.net/?s=DBS
I wrote a few blogs on the topic…. here is a link to get more information about my experience with DBS. Hope this helps! https://www.parkinsonsinbalance.net/?s=dbs
Yes i got my DBS implant 10 yrs ago.
thank god there is dbs. how you like it after 10years? any side effects,what med are you on?
Hi George, my dad has had PD for the last three years. I would love to talk to you more about what you are currently doing/eating so I can help him as well!
I had my DBS put in in 2008 and I would tell anyone that is thinking about it just do it. The only think I don’t like is the fact that I have my battery pack replace twice that is really the only thing I don’t like
Yes I’ve had DBS in 2012. In 2015 my Tremor worsened. I had Essential Tremor. Now I also have PD. And it’s progressing.
hi all I have recently started dating a man with Parkinsons I myself have Hashimotos (auto immune disorder) We are taking it one date at a time so far so good We really like each other
Awesome! I wish you two all the best!
Hi. I’m 47 and my brain is dying. lol.
My father had Parkinson’s (Rest his soul) and my middle brother and I have it too. I’ve done my own holistic stuff and it definitely seems to be helping.
To get to it… It’s a difficult notion for me to try to date, let alone fall in love, as I know what it’s like to watch someone you love die, an endless death it seems, etc. I don’t want to burden anybody with that. My question is.. is there any dating sites that are legit that would cater to finding someone that is in roughly the same boat as I?
Thanks and no worries. 🙂
Jason in Michigan.
Jason I feel you! It’s hard to find someone who will be able to look past the disease. Wish there was a good dating site, but no such luck. Guess it’s a market that should be tapped into! I would be the first to sign up! Lol
Hi Jason….I feel the exact same way. I am 51 with mild PD, but I know it will progress eventually. I was married 24 years until 3 years ago. Not sure how to go about dating.
I’m 61, single after 22 years, and it is difficult. Did the diner and movie thing but my meds left me towards the end of the evening. My most obvious symptom is voice and facial stuff. Another couple picked up the conversational slack but now I’m gun shy . For now im sticking to old friends and they understand but thats really limiting . And with men and p.d. there’s that other thing . Talk about being gun shy, wow. I am very fortunate that for now I can hide or overmedicate for about 2 hours. But yeah it really is frustrating. But of course it could be much much worse .
I was diagnosed almost a year ago now-the issue of dating is something I am still struggling with. I do have a tremor which is observable but not too bad some of the time. Several years ago I dated someone who was a breast cancer survivor who told me of her issue on our second date. I have been trying different things as to timing-I like the idea of telling someone over the phone before a first date. However, I have found that some online daters prefer no phone call prior to meeting-then the second date seems to work..
It’s tricky to find the right time. I mean you don’t want to shout it out right away, but you also don’t want to make them feel like you were hiding it.
i am newly single but far from dead . i am shy but need people who are not close minded to pd i am 55 years old have been told I’m not bad looking but my soon to be ex husband is such an egotisticle dog that after 12 years of marriage says i am not the person he married so i am sitting here alone
Sometimes being alone is better than being with people who make you feel alone.
Still looking?
Hello there
I am currently dating a man with Parkinsons I have An auto immune disorder We were both very up front and honest about it all straight away. WE have been seeing each other for a few months and really enjoy each others company etc. Its all about the person and connection i think If you have that you can work through things as they arise
cheers
sometimes, as i found in my own situation, a person thrust into a caregiving role tend to revolt, the premise of ” in sickness and in health”, works as along as no one really gets sick. what i’m about to share may seem conflictual based on present circumstances, but is an honest and genuine account . i like myself better with parkinson’s – if we could rewind my life you would meet a very different person. i was a full on ass hole – i spent my time finding fault, nothing was good enough. i rode the bumper ahead of me in the fast lane, my agenda mattered yours didn’t, my needs overwelming yours…now a gentleness, proceeds my new walk, i greet everyone with a smile. i make eye contact with the bell ringer outside the local store, and give all i can, generous and pleasant, I’ve found i have time to talk ,but more important i listen. i am a writer so i tend to gravitate towards people with a story – i personally believe that those of us with parkinson’s are a brave lot, and i’m proud to be associated with the same
What a great point of view! Thank you for sharing. It makes me think of why I am grateful for having Parkinson’s. I have learned not to worry about the future, and live in the present.
Finally! Dating parkinsonian people! You exist! Help me I feel so unwanted on OURtime
old AND Parkie
Chris
It’s a tough place to be. How do you find someone who isn’t afraid of Parkinson’s and understands the patience needed to let love grow. I still haven’t found the right formula, but I am hopeful!
There are sites for people with disabilities, thats where Im going after my child leaves home!
Hi Chris,
I also wish there was a dating site for those of us with PD. I was thinking about calling up Match, and hearing what they have to say about introducing such a site.
Call em’ . 🙂
Thanks everyone, I’m more anxious than warranted I guess. If I juggle my meds a little and another person or couple is along to pick up conversation when/if i start to sputter I’m fine. But damn I hate feeling like I’m 16 yo again…
I hear you. It is a lot to ask of someone who you just met to take on Parkinson’s disease. I definately have been giving this more thought. How do you meet someone now days? I work with mostly elderly people, so meeting someone at work is kind of out of the picture! Ha!
Are there dating websites exclusive to parkinsons?
Not that I know of. Good question!
nice to see others have the same concerns. i really hate dating sites that always seem to have ladies who want to go dancing. 🙂
thanks for lightening up my day Perky 🙂
I totally agree not to waste your precious time with someone that doesn’t want to be with you. After all there’s someone who will appreciate you and stand by your side through thick and thin. Keep searching and never give up.
I’m dating a lady with Parkinson’s that she’s had for 13 years. we’ve been together 9 months and I must say we do connect. I know all about Parkinson’s and the research being done to correct it-it’s just a matter of time before the symptoms are kept at bay. anyway we have a great relationship. when she shakes I just take her in my arms and tell her we’ll shake together. when she’s in pain I take her in my arms and tell her to give it to me. she is one special lady,
bill
wow how wonderful that you have that awareness and see her for who she is and not what she has
good luck to both of you
True Religion Jeans, you say?
Thanks Miss Perky for being there. It is great to see so many positive people out there doing the best they can. With help from each other life will be a bundle of laughs, despite this jerk of a disease. XX
I am a super-fox.
I am a super-fox.
I am a super-fox.
It is sooooo true!! You are a super-fox!
I know what you mean…. no tremor but I am awfully squirmy. They congratulate themselves for it!
I am a new subscriber to your blog and am enjoying reading your posts. As a fellow “parkie” i appreciate your positive outlook and keen sense of humor. Sorry i did not find your blog earlier. But, better late than never! Keep up the good work.
Thanks John! Glad you found me.
You are just the cutest darn thing Mizzzzz Perky Parkie! If I could only have YOUR sense of humor. As a caregiver I need to see more humor in our situation and you provide that, never mind that I’m married and not doing the dating ‘thang’ … but it is really fun to read your BLOG and laugh … you go girl!
Thanks Robin! I will keep you laughing on my journey!
Agree with everything you say! My husband, whom I dated and then married 5 years into my PD journey would also agree.
Yep. Doing dinner at your favorite restaurant can be fun. I am done with dating, at least I hope so @ 67 y/o. Would you like chop sticks? asks the waitress. “Not for me, Could I have a big spoon please?” From that time on they are waiting to see why I need a spoon. I do not disappoint. No please don’t offer me any wine. That will be really messy.
Maybe wine with a straw?
My rules of dining in public include: no soup for me, ever; no salad or pasta or anything with small pieces which will inevitably end up on my shirt or lap; and most importantly, something that will be a great leftover, because it always a choice between eating or conversation. Good luck on your adventures in the dating world!
Love the leftovers! What about dessert?
Oh, dessert is never a problem! Somehow, my dopamine-deprived brain finds a way!
Allison, as always your insights offer a plethora of PD Life’s Lessons; all positive, mingled with a twist of humor. While I am still married to the same Scottish Lass for the last 45 years, it is good to be able to preemptively assess challenges with social interactions from a PD perspective and how best to handle them. Your unselfish and genuine caring and support to our Community is unsurpassed. I took a few minutes at the end of our RSB session last week and shared with our group your wonderful Perky Parkie Blog with a suggestion they pile on. Thank you for all you do.
Wayne,
Thank you for sharing my blog! Your kind words have made my day a bit brighter.