2 posts tagged “early onset PD”

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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Young professionals, students and patients gather to collaborate at 5th Parkinson’s Disease Summer School

Posted April 9th, 2013 by

The Parkinson’s Disease Summer School was founded in 2008 by Paul de Roos of the European Medical Students’ Association and Krzysztof Nesterowicz of the European Pharmacy Students’ Association. This year, the school is leaving its European roots and relocating to Montreal, Canada.

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Thirty participants from around the world will work in small teams to develop “relevant and realistic research project proposals.” While the chosen participants come from a variety of professional backgrounds, they all share a common interest in advancing Parkinson’s disease (PD) research. The ultimate goal is to get participants thinking outside the box to create future projects that can “make an impact on the lives of PD patients.”

Just like PatientsLikeMe, the summer school knows that to advance research we have to connect with people who aren’t just studying disease, but living with it. Sara Riggare, a PhD student in Sweden with early onset PD, and Jill Ames-Carson, a physiotherapist from Canada living with PD, will both be at the summer school. Their participation and contribution will help lift patient centered thinking about PD to the next level.

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“This year we celebrate the 5th edition of the summer school. We are pushing the boundaries by intensifying our engagement with Parkinson’s patients in our learning and evaluation process.” –Paul de Roos, MD

Some of the experts that will be guiding the participants through their work were selected by the Movement Disorder Society. The summer school is also teaming up with The World Parkinson’s Congress so that participants can showcase their research ideas directly to Parkinson’s professionals.

If you’re living with Parkinson’s disease, find others just like you in the growing community of almost 7,000 Parkinson’s patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the Parkinson’s disease forum.