10 posts from March, 2018

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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PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Posted March 20th, 2018 by

Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in an information network. Read on for Sally’s recap of the day and what came out of it: the MyHealthEData Initiative.

The topic for the meeting focused on electronic health records (EHRs) and interoperability, with specific attention to privacy and data protection. Joining me around the long wooden table in the suitably decorous room were eleven other invited “innovators” and our hosts: Seema Verma, who heads the Centers for Medicare and Medicaid Service (CMS), Don Rucker, the National Coordinator for Health Information Technology, and Chris Liddell, Senior Advisor to the President and Director of Strategic Initiatives.

The discussion started with our hosts giving their perspective on the need to ensure patients and their providers have access to needed health information. We then went around the table for introductions and we were given 2-3 minutes to offer comments on the topic.

“For the most part there was widespread agreement that patients need and want to have control of their health data and that there is a willingness to accept some risk to privacy for a meaningful health record accessible to them and their providers.”

Here’s a recap of my 2-3 minute megaphone moment in response to the questions we were asked to consider:

How important is interoperability to you and why?

All interoperability is good if the end goal is to enable access to data easily. As a patient/consumer I expect that all information/data about me and my health should be accessible to me and those I choose to share it with. To that end, it’s essential that data is where it needs to be when it is needed across all providers and settings of care — which includes me and my family caregivers as “providers” and my home as a “setting of care.”

What have been the main barriers and how might we overcome them?

Our current EHRs focus on billing and administrative functions. There is very little in the EHR functionality designed to drive care decisions and improve health outcomes for patients.

Vendors have not only created systems with little relevance to patient-centricity, they have actually “dumbed-down” the entire patient relationship with their health data in patient portals which, for the most part, offer little or no insight into one’s health.

Despite the fact that most of us spend the majority of our time outside of the clinical space the incentives to build EHR systems has focused on hospitals and physician offices. No incentives or money were allocated to create systems that could connect with other settings of care such as our homes, long-term care, mental health services and community-based service providers.

What approaches do you recommend to provide maximum benefit to the patient?

After almost a decade and billions of dollars spent on health information technology, neither providers nor patients have access to a longitudinal health record. We need space and resources for innovators to enter the marketplace to drive solutions. There’s no lack of technological expertise and creativity, but much of this is not inside the walls of our traditional health systems, and the current EHR vendors have no incentives to “rebuild” or “unbuild” their current systems to be patient-centric and patient-controlled.

The Centers for Medicare and Medicaid Service is in a position to realign and leverage their considerable resources to support creating new solutions that bring personal health data into the 21st century for improving health and wellbeing.

(Alas, I have no pictures other than the entry doors into the West Wing because all electronic devices were placed in lockers in the West Wing lobby.)

In the days following this meeting, the White House announced the launch of the MyHealthEData Initiative to enable a system in which patients have control of their data and can be assured it will follow them to each of their healthcare providers.

It is always a privilege for me to represent PatientsLikeMe and to ensure our members have a voice at many tables — including one at the White House. I am especially pleased to see that the MyHealtheData Initiative aligns with the patient first perspective I delivered on behalf of the PatientsLikeMe community in the Roosevelt Room of the White House just a few days before.

Want to learn more about raising the patient voice? Join PatientsLikeMe today to connect with more than 600,000 members living with health conditions!

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