2019-06-04

Episode 071 -- Where Are We Now?


This article was sponsored by NeuroLutions for the benefit of the stroke community.

A Break from the Journey

Recovery from stroke is a marathon, not a sprint.

You've probably heard or read that before. It's a journey. It's a unique one because every stroke is different, and every stroke survivor is different. We are all on our own trip. But we're not doing it by ourselves. Many of us are lucky enough to be joined by our caregivers and medical teams.

Plus, while our journeys are different, they do intersect. As we go down the road of recovery, we meet other folks on their own journeys and at different points in their journeys.

At these way stations, we share tips. We share laughs. We share experiences. And we just share.

In this episode we have one of those chats as we sit around the proverbial road side camp fire with 3 survivors at different points in their journey.

As of June 3, I am 2 years into my recovery working to regain motor function.

I'm joined by Peter and Ria. Peter is about 21 months into his journey working on his cognitive and emotional skills.

Melia and Kerry also join us. They been on this road longer than the rest of us. Kerry is now about 5 years along his voyage as he and Melia work on his cognitive and motor skills.

So take a short break from the road and join us for the largest panel on a Strokecast episode to date as we ask and answer, "Where are we now?"

Melia and Kerry Wilkinson

Melia and Kerry Wilkinson stand outside a houseKerry Wilkinson had a hemorrhagic stroke 5 years ago in 2014. Melia, his wife, became his primary caregiver and aggressively drove his recovery ensuring he got the medical support he needed. She's been sharing her insights in blog posts on the Strokecast website.

Melia grew up in Maryland and has a degree in economics, which she has never used. Immediately after college, she spent a year in Japan teaching English and learning that she didn’t want to be a teacher.

She and her husband met on the East Coast but eventually moved to the Pacific Northwest for his job in computer games – and for the great coffee!

While knowing very little about strokes, neuro recovery or even blood pressure, Melia quickly became an expert and an advocate and has strong opinions on how we can better help caregivers and fine tune and personalize therapy for stroke survivors.

She and her family are lifelong nerds enjoying Emerald City Comic Con, Doctor Who and anything to do with a super hero. Watching her husband thrive and her daughter prosper does allow her to see the real heroes in her life and makes the hard days better.

We met Melia in Episode 64. You can also read her blogposts at http://Strokecast.com/Melia

Peter and Ria Evans

Peter Evans HeadshotPeter Evans had his hemorrhagic stroke in the fall of 2017. Ria, his wife, became his primary caregiver and together they navigated the new emotional landscape of post-stroke life. They've candidly shared their story of mental health and emotional struggles with us in prior episodes and blog posts.

Like many others, Peter first came to LA hoping to break into acting in film and television, and it was that which brought Peter and Ria together when they worked together on her cable public access TV show and a feature film they both produced on the set of which he says they fell in love. “She may have stolen my heart,” he says, “but what she gave me back in love and support over these past 20 years, on balance I feel like I’m a millionaire—Definitely feel like I came out a huge winner on that deal, the day I met Ria!”

Ria Evans HeadshotPeter continues to this day contributing on-line content for Stroke resources and putting his years of Project Management to good use, paying it forward to all his fellow stroke survivors.

We heard from Peter and Ria in episode 60 and episode 67. You can read Peter's blog posts here.

Discovering New Deficits

Another thing that we touch on that I want to call attention to is the idea that as we recover, we discover new deficits. As I mentioned in the conversation, I've recently discovered I don't have ulnar or radial deviation -- I can't move my wrist left or right. It's not that I've lost any capability. Just the opposite in fact. As I've recovered bigger things, I start to discover things that previously flew under the radar.

That's a good thing.

Power of Hobbies

We also got into a conversation about hobbies -- 3D Printing and older computer challenges from the 90s. And as we started to go into that rabbit hole (I did cut some of it) it wasn't so much about stroke or disability. Just about stuff we are interested in.

And that's important because while it does have a big impact on our lives, our lives are still so much more than just stroke survival. I don't talk too much about the rest of my life on the show because the show is specifically about stroke world. But it's so important for survivors to get involved in other things they are interested in. And the added benefit is the aid a bobby can be in recovery. Just look at Kerry's experience with 3D Printing.

And for caregivers, too, it's important. Caregiver are still must still be able to have their own life and hobbies.

And if you can't imagine doing stuff after stroke, talk to the OT. Talk to Rec therapists. Talk to other survivors and caregivers. There are an amazing number of unexpected solutions out there.

Trina Talks Podcast

I had the privilege of being the first man to appear on the Trina Talks podcast.

Trina Talks is a podcast with inspirational talk based on wisdom gained through Trina's life experiences for women who want motivation and inspiration to go to the next level in their lives, whether personal or professional. Trina L. Martin is a motivational speaker, leader, and cyber tech expert.

I share my story and journey as we talk about the challenges, signs and causes of stroke, and some of the specific challenges women face. You can listen below or subscribe to Trina Talks for free in your favorite podcast app.

 

 

More Social Channels

I mentioned in the previous episode that I've launched a Facebook Group for the Strokecast community. So if you're on Facebook, come over and join us to talk about the latest episode or your own or your loved ones' strokes. Or just pop in and say, "Hi!"

You can find it at http://Strokecast.Com/FacebookGroup

I've also just launched an Instagram channel for the show. I'll be sharing more quotes from the show, images from other survivors, stuff about my own recovery, and other things relevant to folks who listen to the show.

You can search Instagram for Bills_Strokecast or just click here: http://Strokecast.com/Instagram

Strokeaversary

And on a personal note, I'm recording this bit on the morning of June 3, 2019. That makes today my second, second birthday -- my 2-year Strokeaversary. I'll be talking about that in greater detail next episode, but for now I'll just say I'm grateful for all the support I've gotten over the past 2 years, for the progress that I've made, and the future that is yet to come.

You can hear some of my thoughts in this Facebook Live video I shot in the afternoon of June 3, 2019.

In summary, I'm happy to still be here.

 

Hack of the Week

Stand off center while doing dishes.

When I do dishes, I tend to make a mess and get water on the floor and the counter. Granted that happened before the stroke, too, but it happens even more now. And I splash myself more as I do this one handed.

I'm used to standing in front of the faucet, centered on the sink. But really, that's a legacy of the days when I used to do dishes with 2 hands, and both had to have access to the sink.

I recently realized I don't have to do that anymore. Now when I do dishes, I stand a step to the left. That means, my right, unaffected arm and shoulder are now centered to the faucet.

The one working hand has full access to the sink. The weak left is out of the way, and I don't splash my clothes nearly as much anymore.

Part of living with disabilities is figuring out what I used to do to accommodate two hands and that I no longer need to do that in the same way.

Where do go from here?

Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.


Here is the latest episode of The Strokecast

Posted by Cromely at 2:05 AM
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