10 posts from August, 2017

“Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease

Posted August 30th, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Karl and Angela Robb, the husband-and-wife team behind Karl’s blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and the authors of two books. You might’ve already seen Karl’s #MoreThan story. Karl and Angela recently shared even more with us in a Q&A about Karl’s diagnosis with young-onset PD, living 30+ years with the condition, and maintaining a strong relationship and an award-winning blog, to boot. Stay tuned for guest blog posts by Karl and Angela as part of this collaboration!

Young-onset Parkinson's

Your blog’s name – and much of its content – reflect your appreciation for calm, peace and quiet, especially in the pursuit of “dealing and healing” with PD. How did you arrive at a peaceful outlook after being diagnosed at a young age with a serious condition? 

Symptoms began in my teens. My diagnosis for Parkinson’s disease came about six years and eight or nine doctors later. Knowing hardly anything about Parkinson’s disease at age 17, I was sure that I had a brain tumor. I prepared myself for the worst possible outcome and made the decision that whatever the result may be, I was going to make the best of it. I was going to live and be thankful for it.

I have not always been at peace with this illness but it has definitely improved and mellowed with age. I believe that learning Reiki almost 20 years ago and lowering my stress has played a big part in accepting this illness.

How do you manage on days when you’re feeling more frustrated and stressed?

We all experience days that we would prefer never getting out of bed. With Parkinson’s, you have your better days and your less good days. You can never be certain that your medication is going to function—you just hope. I try to not allow stress or anxiety to dominate my body. It doesn’t always work. The best results that I’ve come across are complementary therapies like yoga, meditation, massage, and Reiki, as well as reflexology and staying open to new options. I’m a pretty positive person.

What aspects of PD do you find most frustrating and how do you get back to a peaceful mindset? 

The most frustrating aspects of PD are the loss of control and the unpredictable twists and turns that may come at any time. I often feel that I need a backup plan to my backup plan. All I can do is to move forward and be as strong as I can be. Keeping balanced, vigilant and calm is best, if I can do it.

It’s clear that you two work as a team. How did you form such a strong partnership, in your work in the world of PD and in your marriage? How has PD challenged or strengthened your bond?

Karl: We started as good friends and our relationship just grew from there. I would say that we are soul mates rather than just a couple. Sure, we work and live together, but we argue on occasion just like everyone else. I love her completely through and through and love her company. I am so lucky to have found her. She inspired the creation of the blog and books.

Angela is an amazing person — she has a very big and loving heart. She married me post-diagnosis and I am ever so grateful for her love! I love collaborating with her!

I would have to say that the greatest challenges might be a reduction in clear communication. I need to focus more on being clearer with my speech and finishing my thoughts. I have to keep reminding myself that nothing is easy or automatic anymore. Everything I do requires more effort more. Thirty years with PD is a long time.

I think that we stay open and honest with one another and we talk to each other about almost everything. More than anything, we laugh a lot! We continue to learn from each other and enjoy being together.

Angela: I’ve only known Karl with Parkinson’s disease since I met him 4 years after his diagnosis. I love Karl but I do not love Parkinson’s. We are never guaranteed a life without challenges. The most important thing we can do when facing any challenge is to do our best to live as best we can.

From the beginning, open and honest communication has been the key to our relationship. When we fail to communicate well with one another, that’s when we notice tension in our work and home life. Learning to spot the “warning signs” of bad communication helps us to put things back on track.

We work hard to make sure we agree on our goals and consciously check in with each other to assure we are working toward those goals. Not just for our work but also in our marriage. Our commitment to each other has also meant a commitment to a shared purpose: We both agree that our greatest work is to help those living with Parkinson’s disease and other health conditions.

Lily Robb 

What gives each of you a sense of peace or joy? 

Karl: I love going to new places with Angela and teaching people with Parkinson’s about reiki and techniques that can make life better. I love to write and take photos of nature and animals in the wild. I love traveling with Angela and our chocolate lab, Lily.

Angela: I love: 1) The touch of Karl’s hand or his hug. 2) When our dog, Lily does something goofy and makes us laugh. (She’s such a clown!  She steals a sock then turns around and shows us the sock.) 3) The beauty of nature. From the smallest flower to the vast sky – there is so much peace to be gained by just stopping for a moment and being in awe of the nature around us.

 

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Raising awareness and taking action for Psoriasis Awareness Month

Posted August 28th, 2017 by

August is Psoriasis Action Month, and this month when those living with psoriasis raise awareness about what it’s like living with a condition that is often misunderstood and stigmatized. We asked members of the PatientsLikeMe community to share what they wish others knew about life with psoriasis and psoriatic arthritis, here’s what they said…

Like the National Psoriasis Foundation says, psoriasis isn’t contagious, but awareness is! Share your experiences with psoriasis or psoriatic arthritis and learn from others living with the same condition.

On PatientsLikeMe there are more than 5,600 members living with psoriasis and more than 2,000 members living with psoriatic arthritis. Log in to PatientsLikeMe now to join the conversation share your experience and learn from others living with the same condition.

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