2 posts tagged “care partner”

Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

Posted March 21st, 2018 by

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Here’s their take on dating and relationships.

From Karl’s perspective…

Imagine dating in the early dawn of the internet along with a diagnosis of a neurological disorder. As if I didn’t have enough obstacles in my life, now I had to explain to my dates that I had early-onset Parkinson’s disease. Now, I came with a “warning label.” The challenges of dating, connecting, and finding someone who could look beyond my illness would take a miracle — or so I thought.

Admittedly, in my late 20s and showing signs of Parkinson’s disease (mild shaking, involuntary movement, stiffness, gait issues, and mild speech impairment), I didn’t see myself as a gem, but I still felt that I could be a loving and compatible mate. I knew that finding a partner willing to love and marry someone diagnosed with a supposed progressive, degenerative chronic illness wouldn’t be simple – this person would need to have incredible compassion, unimaginable courage, and beauty beyond compare.

I met wonderful women throughout my dating days, but many had their own issues or just couldn’t deal with my illness, or me. After a while, you realize your shortcomings and build up your own confidence. I wasn’t at fault for being ill and I wasn’t looking for someone to feel sorry for me.

I needed someone who could look beyond my symptoms and see my drive, my spirit, and my sense of humor. I needed, Angela.

I had tried conventional dating but was drawn to online dating, which gave me the opportunity to focus on personality, wit, and character, and not worry as much about symptoms that might deter from a positive first impression. I devised a series of 20 Questions and through AOL Instant Messenger (IM) discussions; I was able to see whether we had enough in common to actually meet in-person.

I met Angela by pure luck or destiny. I came across her username and started a conversation about her name choice. We started with intermittent emails that led up to nightly IM exchanges. Following weeks of discussions, we began talking on the phone and ultimately meeting after three weeks. Our professional lives and geographical distance delayed our meeting in person.

When Angela and I finally met for the very first time, it was like meeting an old friend. I can’t remember any date that felt the same.

After a few weeks of our online courtship, I disclosed my ailment to Angela, unsure of how she would react. Happily, and true to her nature, she seemed unaffected when I dropped the bomb.

Now, we have been married for almost 22 years. Angela remains my best friend, my partner in every way, and the person I want to be around most. I am so fortunate, blessed, and lucky – and I know it!

From Angela’s perspective…

When I met Karl, I really had no intention of meeting the love of my life – I was 24. Our first week, we sent emails to each other and played 20 Questions via Instant Messenger (thanks, AOL!). Those questions and answers gave me a perspective into the person who was on the other side. He was funny, intelligent, and caring.

Karl revealed his diagnosis to me via telephone. I thought that Parkinson’s was a disease that only older people got. I spent the next hour asking numerous questions about Parkinson’s and how Karl lived with his condition.

I can honestly say that my first reaction was of surprise that someone who was 28 years old would have Parkinson’s. My next thought was to learn all I could about Parkinson’s.

I did some online searches and consulted a leader of an online Parkinson’s support group. Even though it’s been 23 years since we spoke, I still remember his sage advice: “Don’t get involved with this man with Parkinson’s, unless you are absolutely sure you can live with the unpredictability of this chronic condition.”

I thought about his advice and realized that I wasn’t about to give up a relationship with my soulmate because he had a chronic condition! I committed myself to him and our relationship. I realized that everybody has something that we are living with – none of us are immune from having challenges in our lives. I figured that if Karl could live with my personal challenges, and me, I could live with him, and his challenges!

What has worked for us…

It has been over 22 years since we’ve dated, so we are far from experts, and everyone’s relationship is different. But here are a few important issues that we feel everyone should discuss openly, when they are meeting and developing a relationship with someone – especially if a person in the relationship has a chronic condition:

  • Are you prepared to have open and honest communication? This is the cornerstone of any relationship. It’s imperative that the people in the relationship be honest and truthful with one another. If you can’t do this, you really need to take a hard look at yourself and your possible relationship. Can you communicate your emotions to each other without fear?
  • Are you prepared to trust one another? It cannot be understated how important trust is in a relationship. Trust penetrates all levels of a relationship: physical, mental, emotional, spiritual, fiscal, decision-making, healthcare choices, and more.
  • Can you truly love without conditions? Unconditional love means loving someone no matter what happens – loving him or her through the good and the hard times. Can you give your love when your loved one may be incapable of speaking, showing, or demonstrating their love due to the impact of illness?
  • Are you willing to be flexible and adapt? Flexibility in coping with a chronic condition is a must! Being rigid and unbending in your daily life can make living with the ups and downs of a chronic condition even more difficult. Adaptation requires always being on the lookout for choices, options and new approaches, with an open mind.
  • Can you listen without judgment? Listening is an important relationship skill that needs constant attention. It’s not easy, doesn’t come naturally, and requires development. Listening means being open and waiting for your loved one to get his or her entire message out without interrupting. Listening is important even when it’s hard to hear what the other person has to say.

Finally, you have to be confident and love yourself, no matter what the challenge, in order to love someone else. Be patient with yourself and your potential partner!

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Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”

Posted April 4th, 2012 by

PatientsLikeMe Member Jim Askell, Author of "Wobbling Home:  A Spiritual Walk with Parkinson's"

Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007.

A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This meditation on illness and faith looks at Parkinson’s through the lens of Quakerism.  Why does this Quaker recorded minister view the disease as a gift?  What does he wish the public knew about Parkinson’s?  Find out that and more in our interview below.

1.  Tell us about your latest book, Wobbling Home: A Spiritual Walk with Parkinson’s.

Wobbling Home follows on this man of 73’s two definitions: I’m dealing with Parkinson’s Plus and for forty years I’ve been a Quaker (The Religious Society of Friends). My Quaker belief is that my life itself is a gift: precious, freely given, unearned. And further, that everything in my life is a further gift: health, abilities, family, valued friends.  I’ve earned none of these. They’re gifts. And after my initial diagnosis, I came to view Parkinson’s as a gift as well. It’s not one I would have chosen, but I accept it gratefully as the definition of the rest of my life.

Click Here to Learn More the Book on Amazon

And so the book is an attempt to share my attempt to harmonize this progressive disease with my own pilgrim’s progress as I wobble on toward home. I talk about Parkinson’s from the inside, dealing not just with the physical symptoms (lack of balance, shuffling walk, tremors, slurred voice, etc.) but with the perceptual, emotional, and psychological symptoms that recreate our interior lives. And that’s where Parkinson’s and my Friends’ beliefs dovetail together.

2.  In honor of Parkinson’s Awareness Month, what aspect of the disease do you think the public needs to know more about

The general public needs to know of the prevalence of Parkinson’s. Statistics now suggest that one in every 300 of us Americans suffer from it, with an ominous bulge in rural populations, perhaps because of careless use of pesticides and chemical fertilizers. Second, the public needs to know that, though their disease is chronic and irreversible, until its later stages most “Parkies” can live largely normal and often very productive lives.

Third, the general public (and many, many doctors) need to know how subjective Parkinson’s is from patient to patient. In our [local] support group, no two members have exactly the same mix of symptoms and medications. And fourth, the general public needs to know how important it is that they make a place in their midst for Parkinson’s sufferers, and for all with chronic, incurable diseases. To my mind, that’s what  “treating others as you’d want to be treated” is all about.

3.  You and your wife attend a support group that has both joint and separate meetings for patients and caregivers.  Tell us about that.

Care partners, female or male, are the unsung heroes of Parkinson’s. When our support groups meet, we first have an hour with Parkies and partners together. It’s a how-goes-it session, with each person present saying what the last two weeks of dealing with the disease have been like. Members in each group often learn surprising things about their partners’ dealings with a disease they truly share.

In the second hour, the groups separate. Care partners can then talk together about their own challenges, frustrations, and manners of coping with someone increasing debilitated, both physically and cognitively. (From what my wife tells me, a good amount of healthy venting goes on.) Meanwhile we Parkies are trading notes across the hall. Talk among us is largely of symptoms: who is having plumbing problems, who is dealing with hallucinations, who is frustrated with his GP or neurologist’s seeming lack of understanding of what’s going on INSIDE her or him.

Our group is largely men with a few women; the [partner] support group is largely women with a few men. (Initially we thought we’d have to have an all-men’s support group – how else to talk freely about plumbing problems and the like? We needn’t have worried a moment! Turn out that we’re all rowing the same boat.)

4.  What kind of role does PatientsLikeMe play in your life?

PatientsLikeMe is an invaluable aid to me, and I recommend it to everyone in our group. In fact, it fulfills the same great needs: for good and reliable information but, perhaps more important, for a sense that I’m not alone with Parkinson’s challenges. God bless PatientsLikeMe, its staff, and its work!