A Parkinson's Affair: The Story of Deb & Dan

A

Parkinson’s Affair

The Story of Deb & Dan

Dan C Wainwright

A Parkinson’s Affair

Copyright © 2021 by Dan C Wainwright

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other non-commercial uses permitted by copyright law.

Tellwell Talent

www.tellwell.ca

ISBN

978-0-2288-6151-5 (Hardcover)

978-0-2288-6150-8 (Paperback)

978-0-2288-6152-2 (eBook)

Dedicated to Deborah,

my partner, my best friend,

my inspiration.

COCO

Contents

Foreword

Prologue

Chapter 1 Our First Date and Summer

Chapter 2 Commitments

Chapter 3 The Good Old Days

Chapter 4 Living Large

Chapter 5 Long Term Disability

Chapter 6 DBS Brain Surgery

Chapter 7 Getting Turned On

Chapter 8 A Serious Set-Back

Chapter 9 Home Health Support

Chapter 10 The Intermediate Years

Chapter 11 Sedentary Transformation

Chapter 12 Parkinson’s In A Pandemic

Chapter 13 Making The Call

Epilogue

Foreword

I began writing this book in early 2021. I’m still not sure exactly why, perhaps as a legacy of our time together. Or it could be an attempt to simply remember. As things become more difficult, I find myself missing the ‘us’ I used to know.

This is the story of Deborah Payment and me. It is a story of love, commitment, and devotion, a journey through life with Parkinson’s disease as a constant companion.

I have not written this alone. As I added sections or stories, I would read them to Deb for her review and input. She gave me permission to use her posts and the data included here. Also, she has a very good memory and reminded me of many details I had missed. She is fully aware of everything in here, the good, the bad, and the contentious. She asked me to eliminate some details here and there, and for the most part I did. But not always.

I laughed while writing many of these memories and cried like a baby at others, knowing I won’t have Deb with me much longer. No, she’s not dead or even dying, it’s just that Parkinson’s disease will soon be separating us. And that may be harder than anything I’ve ever been through.

I hope you enjoy our narrative.

Prologue

Our affair began, as many now do, with an online dating site and two somewhat lonesome people looking for love. I was coming out of a brief fling with the wrong person, someone I should have avoided but lonely hearts can cling to affection. Deb had been out of the dating pool for at least a year after being diagnosed (finally) with young-onset Parkinson’s Disease in May of 2012.

My name is Dan, and prior to meeting Deborah I had had two and a half significant relationships. I married the first and we had two biological offspring. She left me to become an Indy car groupie, taking my kids out of the country upon our divorce. They have since become estranged. My second marriage was with a woman who brought two children, a daughter and a son, from a prior marriage. We were together for 16 years before I was blindsided with an I’m leaving you. Only the boy, James, has remained in my life. My ‘half’ was a very nice lady with whom I had a three-year relationship. We never moved in together, and I believe it was my immaturity and failure to commit that ultimately resulted in our demise.

Now Deborah has not shared much of her back story, although I do know she’s never been married. Oh, and she mentioned one dysfunctional relationship with a cute boy from high school with whom she eventually had a daughter, Jaclyn. While not married, they lived together on and off for many years. Evidently, he had commitment issues. And she’s told me about the seven years she dated that married man. But she’s never told me how many short-timers there were, perhaps she doesn’t know, but I presume there were plenty. She once told me that she viewed dating like broccoli; she didn’t really like it, but it was good for you. She was not looking for a deeply meaningful relationship at this point.

Before we met, Deborah had experienced numerous physical problems, mostly affecting her joints. As she tells it, she had a frozen shoulder, a broken wing, a sprained ankle, and a slight tremor. After numerous doctor and physio appointments over the course of many years, she was finally diagnosed with Parkinson’s Disease in May of 2012. And the multitude of symptoms initially responded well to the PD medication levodopa.

In the spring of 2013, I created an account on the OkCupid dating site. I had, as they say, just recently ‘ghosted’ a woman after she expressed dissatisfaction with me. I remember thinking, I’m too old for this shit, and was ready to move forward. I was 55 years old and semi-retired. Around the same time, Deborah’s co-worker at the union office encouraged her to sign up to this same site. It wasn’t long before I got a notification that she had given me a good rating. So, I decided to send her this message:

Hey there,

Thanks for the high rating. You must have ignored the Ya’ll Got Issues comment. But only a 47% match, perhaps opposites attract, ‘cause I almost wrote you earlier despite that. So, I’ll leave it to you to reply with your thoughts.

[Note: The Ya’ll Got Issues was the web-site generated compatibility comment.]

That was Sunday, June 23rd, 2013. A few more back and forth messages followed with things like:

….. meanwhile, I’d say I am just relying on my own analysis...:) - Deb

….. You even appear to have a great sense of humour (no one has scurvy) - Dan

….. the only thing that almost stopped me was the CFL list.... Sask! - Deb

….. I see now that we’re now a 58% match, things are lookin’ up. - Dan

By the end of the messaging, we had exchanged phone numbers and made arrangements for a phone conversation that evening. Oh my, she was indeed witty and wise, and we shared many of the same family-type values. We discussed numerous topics, give and take, each of us thinking WOW.

I’m thinking she’s smart, very articulate, and we have so many things and ideas in common. Deb was thinking, he’s different, willing to discuss any topic, we’re having a discussion not an interview, this is excellent. We talked for at least an hour about all sorts of stuff, and then boldly made a date for Tuesday afternoon for a face-to-face meeting, lunch and a beer at a local neighbourhood pub. Deb’s first impression from our phone call was that I was unemployed, meaning she’d have to think of inexpensive dating ideas.

Tuesday morning comes around fast, and Deb is wondering, What am I doing? This is her first ‘computer date’ and it all seems a bit daunting. But she gathers her resolve, figuring if it’s not right she’ll just leave. She knows the pub and it’s only a few minutes from her home. But the traffic pattern has changed and she’s now going the wrong way. With a little perseverance she finds the parking lot, only a few minutes late.

I was unbelievably nervous, arriving at the pub 10 minutes early thinking, I left too early. My anxiety builds as the time passes and she hasn’t shown. Oh well, stood up again, give it another 15 minutes then order a beer and a burger. Shortly after this decision I see her walk up from the parking lot and enter the building.

Well, she sure is pretty, great smile, and she seems a little nervous too.

Hi–Deb?

Dan?

A little hug and we sit and start chatting; the Canucks have just hired a new coach. Talk comes easily, just like our emails and first phone conversation. The poor waitress with the long emerald-coloured nails keeps returning to take our order, but we just kept chatting. Time stood still. A short respite in conversation to order lunch, and then back to it. I found Deb smart and witty, cute and playful, and I knew I wanted a real date. But how to broach the idea? So, partially in jest, I suggested going to the Lions football game. Her reply Sure, that sounds great lifted my spirits. The discussion continued as we solidified some date details. We would attend the home opener on Thursday evening, in nine days’ time.

But now Deborah had a dilemma. When should she disclose her medical issue? She’d had online conversations within a group forum. Opinions differed, but her honest personality demanded that she provide ‘full disclosure’ before going further. She begins with, Dan, I need to tell you something important about me. In my head I was thinking of potential deal killers. She continues. This is serious and difficult to bring up. Now I’m thinking, holy crap.

Beginning hesitantly, she goes on to say she has Parkinson’s Disease (PD), a progressive neurological disease, and needs me to know this before moving forward to dating. She’d opened herself up and was feeling intensely vulnerable. She was terrified of the potential responses, will I back out, drop her right now, or try to ignore it. Rejection hurts. Evidently, my reaction surprised her. I was thinking, what? Isn’t Parkinson’s an old person’s affliction? She went on to ask if I had noticed her trembling, and I told I had not. It was hardly noticeable, and I had chalked any fidgeting up to nervousness; it was our first meeting after all. But Deb was hypersensitive to these involuntary movements, movements I’d barely noticed. She said she’d understand if I wanted to back out, and I assured her backing out wasn’t on my mind.

It couldn’t hurt to go on a real first date and see where it takes us, I said. Then we agreed to be kind to one another, whatever else happened.

I spent the nine days leading up to that first date at my family’s vacation property on Green Lake. It was there that I did a little research into Parkinson’s Disease, and included the following passage in one of the emails we were exchanging:

I did a little research on Parkinson’s the other day, let’s hope your case is a slow progressing version! Still, a few things I didn’t fully comprehend, I might ask some dumb questions sometimes.

Deb’s very honest reply to that was:

Yeah, Parkinson’s - I am rooting for the slow progression too, and if willpower has anything to do with it.... lol. I actually had a lot more problems before I was diagnosed, and they didn’t know what it was. Once I got medication going, things improved dramatically. I have had a few rough spots, and every time, they have adjusted medication and it works. Sometimes I get tired, and I can’t do really super physically demanding things, but that’s all.

Really the hardest part has been kind of wrapping my head around the whole idea emotionally. Have had some really deep discussions with my daughter about it all, she is amazing.

Please, please ask questions, I hope you will. I had a million of them and have learned a lot. The only question left I want answered, that I can’t get answered, is what will happen to me in the future. That sucks. But when you think about it, no one knows that one - even people without PD. Lol

We continued our exchange of emails, and I continued to look stuff up on the internet. And yes, I definitely asked some dumb questions. But Deb surprised me. She was very forthcoming, considering we’d only met once, in a pub, for an hour and a half. She sent me the following reassuring message:

If someone wanted to date me, he might think, well ok it’s not a big deal now, but what if it gets serious, what if we grew to love each other? He might not want to get stuck caring for someone. Some guys might think well, the whole point of dating is to try and find that forever person – so I already know it’s not her, so why start. Other guys might say what the hell, I’ll just have fun for now, and I’ll cut out if it gets complicated. I can’t imagine ANYONE would say, well I just met her and I will agree now to the forever bit, no problem. (if they did, I’d call bullshit).

I don’t need someone one to care for me. I have my daughter and I have a plan. That’s not why I am looking for a partner. That has nothing to do with PD. I want one for the same reasons I always did – and they ain’t medical. However, if I had one, I would hope he’d stand by me, and I would do the same for him.

Normally - if I was just starting to date someone, and didn’t have PD, I would be ADAMANT that no one should be discussing the future. I feel really strongly that relationships should unfold naturally, and no one should project ahead. But I don’t know if that’s possible now, or fair to ask.

Here’s what I really like about your reaction – you are thoughtful and serious, you asked questions, you read. You asked for my thoughts, and willing to listen (OMG THAT’S SO HOT;). So, if you come to the conclusion that you are not up for dating a PD case, I would totally respect that, Dan. That wouldn’t hurt anywhere near as much as someone who just ran at the very word.

This is crazy to be having such an intimate, heavy talk at this stage. Welcome to middle-aged dating, I guess. We can’t forget though; dating should be FUN. And you and I don’t even really know if we have something here or not yet. But it would be fun to find out.

Wow, how do you reply to that when you haven’t even had a first kiss? The genius in me (and I use that term very loosely) came up with this reply:

Wow, holy seriousness batgirl! Well, let’s start with having a good time at the game Thursday and see if we enjoy ourselves and each other’s company. I’m usually non-confrontational and typically use humour to diffuse or avoid serious topics. Have you heard the one about the …….

I’ll check the sources you mentioned and see if I can get more educated on the subject. As for the future, I need to take things somewhat slowly. Your points are very well thought out, you’ve obviously done a lot of thinnin’ Bubbalouie. And you got some moxie too, mentioning love and forever and other such stuff! I’ll admit knowing you and your daughter have a plan eases my mind some, takes a little pressure off. I too believe relationships should unfold naturally. But, I am a planner when it comes to most things in my life. So, let’s plan to start with dating, who knows you may discover I’m not perfect.

You mentioned that you get emotional when talking about this, well that’s understandable. I send you a comforting e-hug HUG.

Pray tell, what is it you want a partner for (wink wink, nudge nudge, say no more) (oh sorry, forgot you’re not fond of Monty Python).

And so, preparations were made for that first date; we’d meet at 6 pm in front of gate G. She would drive, I would take the sky-train hoping things went well enough to get a ride back after the game.

CHAPTER 1

Our First Date and Summer

Gameday arrives, I now hate that it’s July 4th, I’m Canadian you know, and prefer significant dates not be associated with the Excited States of America (or U Ass of A if you prefer). Actually, we’ve had a floating anniversary tied to the Lion’s first home game of the CFL season. But I’m getting ahead of myself here.

En route to the game, I realize in a panic that my train has been delayed. So, I actually run, well, jog is more accurate, from the station to the gate. We meet at the gate as arranged, I was a few minutes late, but Deb hadn’t been worried. She had made a point to be there despite a bout of food poisoning resulting from her luncheon that afternoon. We had both known the sadness and disappointment associated with being stood up, and neither wanted that to happen. She may have been feeling ill, but she looked good to me. I, on the other hand, arrived all sweaty and out of breath. At 5’10" and 275 lbs, I’m no athlete (picture a smallish down-lineman not a lean lanky outside receiver).

We walked into the stadium, talking most of the way as if we’d know each other a lot longer than a few emails, phone calls, and a single meeting. It’s a long way around and there are many stairs to the upper balcony to our end zone seats. Parkinson’s, what Parkinson’s? Deb doesn’t appear to have any difficulties walking all that way or climbing all those stairs. But I’m so damn nervous that I don’t notice anything at all. We sat side by side for the entire game, a good one, entertaining and a win for our guys. We talk and watch, watch and talk. I couldn’t get up the nerve to hold her hand before the final whistle. (Say what you will, but this is a love story and, spoiler alert – it’s going to work out.) But, on the way out of the venue, I saw something that made me take hold of her hand as we descended the stairs. Perhaps a little slowness or awkwardness, potentially due to the high-end, high-heeled shoes she was wearing. She held my hand in response. I was helpful, and maybe even a touch romantic.

The date, to that point, had gone well enough for me to have earned a ride to where I had parked my car in the suburbs. Deb drove us, and on the way back we just kept on talking. As we neared my vehicle, we decided to stop at a pizza place, ostensibly to get a bite to eat. We didn’t eat much. She was still feeling queasy from her luncheon; I was ‘date-nervous’ and somewhat unsettled. We were having fun, enjoying each other’s company, and we both wanted to prolong the evening. Could she still be waiting for a first kiss?

I got up the cojones to ask her out for a second date. I like dancing and invite her to go to the Saturday night dance at the Cloverdale Legion, or a weekend movie together. After all, we had both included going to the movies as one of our interests on the dating site. She said she liked the idea of going to the dance for our second date, and I was delighted. Alas, it was time to go to my parked car.

It wasn’t far. Deb pulled in and parked behind my Subaru, turning off her Chevy Trax. I held her hand and leaned over to give her that all-important first kiss. A goodnight kiss, a prelude to our next date. KA-BLAM! Our lips met, soft and warm, a little tremble, an overwhelming wave of heat and passion. Deb fondly remembers that it was when I put my hand on her cheek that the temperature rose instantly. I felt something rekindled, the excitement of a teenager, and she was responding in kind. The goodnight kissing continued, caressing ensued, yes it was getting hot and heavy. Sometime later, maybe a half-hour, Deborah was climbing over the centre console seeking out more body contact and I was helping her get there! We were reacting and behaving like crazed adolescents. It was incredible. I did something I’d never done on a first date before, I asked if she wanted to come back to my place. She agreed, and I got into my car. The plan was for her to follow me the mile drive to my home. I was expecting