“You can’t argue a balk”

I don’t know who said it originally, but a balk is baseball terminology (you may need to look it up). Anyway it allows me to link baseball into this whole technology concept. I love technology. I see it as an indicator of life moving forward. I am linking a lot of things into a technology bundle and I realize there are many aspects to this area but in general I see how folks are using technology with medicine. I am all for this.

At the 2014 World Cup in Sao Paulo, Brazil there was a teen who used a brain-controlled robotic bionic exoskeleton suit to enable him as a paraplegic to get up from his wheelchair and make the first kick of the tournament. How great is that? The exoskeleton was the brainchild of a collaboration between several universities across the globe. The technological miracle of a brain-controlled exoskeleton uses an interface technology developed by a Brazilian neuroscientist. He said in a recent interview “we want to galvanize people’s imaginations.”

When I first had the stroke a friend helped Matt set up an e-mail system to notify several people. When I came home from the hospital, I couldn’t read because of my ataxia. I had it in my eyes! I was familiar with a PC, so Matt switched me to a MAC because he could set up the operating system to read out loud to me. This way people could still send me e-mails! I had a nurse and I would dictate to her and she would type and send a response. When I started typing (with one hand) another friend and Matt set up the wordpress site for me. So I am a huge fan of people with limitations using technology. I think technology is a huge part of belonging. All of this connects me to a stroke community and others. Now is there a way to promote the idea that we are a part of something bigger? With all that in mind, I’m adding a new category to my site called ‘guest posts’. This is a place where I can put posts that other people write about strokes, caregiving and/or devices used in the stroke renewal process.

A couple of years ago, I did a post on baseball and how they have a spring training. I know baseball is a U.S. thing. Spring Training happens before the season starts. It’s where players practice the basics and review the game. The week before most players arrive, the pitchers and catchers report to solidify their skills and work on the relationship! That’s something I think baseball and strokes share: time to practice, review the basics and focus on the importance of relationships. (This does not mean that people have to be friends to understand the role of another.) I would put the whole concept as part of the game. What a great thing!

I have a friend who had a stroke before I had mine and when I first met him, he was in a wheelchair. He now uses a bionic leg to walk. This is fabulous. Last month we went to the Oregon Shakespeare Festival as a part of a group. We saw 6 plays in 3 days. There was only one play which I didn’t like. The group was scheduled to have dinner together one night and we had a few guests join us. As fate would have it, the gentleman that sat next to me at dinner was the Assistant Director of that play! So I asked him about the play and the message. He gave me a great answer about looking forward. We get so caught up in the past that we miss all the wonderful things that are in front of us. I told him that we use the word renewal rather than recovery to describe the post-stroke effort. That’s exactly what the play was about. I view technology as a tool of this renewal process. I did a guest blog post for someone and my summary was about finding new ways to do things. Technology can help with this. This is what I mean by “you can’t argue a balk” (or a stroke for that matter) but technology allows us to find new ways to do things. It’s part of our lives!

National Stroke Association has a website for Stroke Smart Magazine and they had a piece on the advantages of virtual reality rehabilitation. They mention that recent studies indicate incorporating the technology used in popular gaming systems like Nintendo Wii, Sony Playstation, and Microsoft Kinect into a therapy regimen can help improve mobility and function. I use my Nintendo DS extensively! I use the games and stylus to work on my ataxia and memory.

There are articles about therapy delivered via a robot to people! How great is this? People who live in remote areas or don’t have access to a person who can provide therapy can get the assistance they need. Recently our public radio station ran a segment on a downtown San Francisco restaurant which is the latest to experiment with virtual alternatives to wait staff. After a person places their order at a kiosk with white tablet devices, they pick up their food a few minutes later behind a glass door or “cubby”. The only humans in sight are the concierges who can answer questions that a person may have about the software and there are a dozen or so staff in the kitchen. While this may sound futuristic, it is something to think about. We have always said in our house “someday a robot will do that!”

As a general rule, I’m not going to modify the guest posts people write. I’m sure you’ve heard the saying “it’s easier to get forgiveness than permission”. This post is from Sara. She and her husband Bill are Lizzie’s parents and caregivers. They have a son who just graduated from college. In May, our families did the AVM Walk in San Francisco. Only Lizzie and I had AVM/strokes but our group was ten people. In the U.S., approximately 795,000 people suffer a stroke every year. On average, someone in the U.S. has a stroke every 40 seconds. Those are stroke statistics — now add to that family members that are impacted by a stroke. The number is astounding I often say the day I had the stroke, it wasn’t only my life that changed. I love the part where Sara talks about Lizzie’s impact on the community.

From Sara: A few words about our family’s experience with our daughter who had a stroke at 19. We met Vangi through a physical therapist my daughter had. When the therapist told me about Vangi and how she was willing to talk to us I felt an instant bond with her as she had an AVM in the same location as my daughter’s. After a few emails we met and I felt an even stronger connection and inspiration from Vangi and her husband/caregiver extraordinaire, Matt. What a duo of strength, love, laughter and perseverance. Further they both make rehab look effortless when we know it isn’t.

Life can take unexpected turns as it did for our family of four, myself, my husband, my son 20 at the time and my 19-year-old daughter. The day after Christmas of 2012, with no prior symptoms my daughter lapsed into a coma from a ruptured AVM and subsequent stroke. Thus started our journey in this world of brain injury and the long and longer road to recovery. My husband and I followed our daughter through a year in four different hospitals from Stanford, to Marin to Bakersfield, observed and learned from the teams of specialist in medicine and various therapies, and stood vigilantly by through two operations to obliterate the AVM. The journey has been incredibly hard, tear filled, emotional, and beyond stressful, physically and mentally. Each step in the recovery seems to have it’s own set of new challenges. Being a caregiver is harder than I could ever imagine. All else seems to have no place in our life. Yet we work to keep our relationship with each other and our son, be mindful of our aging parents, friends to our siblings, and maintain some sort of cobbled together social life.

Despite how hard being a caregiver is every morning we get up and work just like the day before. Providing the initiation that was struck away from our daughter as she continues with her therapies to relearn, strengthen and heal her body. Her progress is slow but over time impressive to see. We continue on as the hopefulness of youth and our daughter’s improvement keep us focused on some goal. Not sure what that goal is but we know Lizzie has a lot of potential to get better.

I’d like to think there is a greater purpose in what happened to Lizzie. And while I can’t think of what it might be I wonder if it is the effect Lizzie has on the greater community. As we walk down our street at night and greet our neighbors I know their lives are touched by the hard work Lizzie does everyday. Many of the neighbors will see Lizzie walking and will come out to cheer her on or greet her and remark on her progress. Lizzie’s injury, hard work and progress has reached our community and then some and effected many people.

If you’d like to read about Lizzie’s journey please check out http://www.caringbridge.org/visit/lizziesomers/journal/view/id/5609a8afa689b4cf5dd5a384#comment-container. You’ll be impressed!

By guest blogger Kari Dahlgren

One thing that I’ve learned about stroke recovery is that half the battle is emotional healing. Yes, physical healing is incredibly important, but emotional healing is arguably just as important and gets a lot less attention. Well, I’m here to fix that! The 3 activities I’m about to share with you will help you dive deep into emotional healing. They’re simple activities, but don’t underestimate just how powerful they can be.

1. Actively Seek the Silver Lining

Looking for the silver lining is important, especially during stroke recovery. Since our brain already has a natural negative bias (yep, we’re naturally wired for bad things to stick around longer than good things), we have to consciously choose to see the good in every situation. And sometimes there simply isn’t anything obviously good in a situation, so it’s up to us to find it!

Whenever you catch yourself feeling negative, start actively looking for the little things that can make you happy. Whether it’s the warm sun on your face or the sound of your favorite song, tune into the happy and tune out the sad. Once you realize it’s a choice, you’ve already won half the battle.

2. Start a Daily Meditation Practice

Meditation is something that is close to my heart. Since I started a daily meditation practice, I no longer feel consumed by anxiety. Instead I feel a steady sense of inner peace (most of the time) that trickles into everything I do. After experiencing the amazing effects of meditation for myself, I knew that it could help with stroke recovery, too. And to my pleasant surprise, there’s a ton of science proving that meditation can help stroke survivors cope with anxiety.

So try it for yourself – even just 5 minutes a day is a great place to start. It might not seem like enough to reap any benefits, but trust me when I say that 5 minutes is plenty. And if you don’t know how to meditate, it’s quite simple. Find a quiet place to sit down, close your eyes, and clear your mind. Try your best not to think and just focus on the sound and feel of your breath. If you can do this every day for just 5 minutes, it can help reduce anxiety and improve your mental outlook. Trust me, I’ve experienced it myself!

Also, if there’s one thing I learned, it’s that you’ll never get around to your daily meditation unless you schedule it into your day. To get myself to meditate, I have to set up an alert on my phone to remind me, otherwise I’ll never get around to it. So if you’re anything like me, you’ll benefit from a friendly, automated reminder.

3. Write in Your Gratitude Journal

I know, I know, a gratitude journal seems so cliché! For the longest time I meant to start a gratitude journal, but I already considered myself a grateful person, so why would I need a journal to remind me of something I was already aware of? Can you relate to that? Well, take it from me when I say that you really should start one.

Once I started writing in my gratitude journal every morning, it primed my whole day for happiness and success. When I was already aware of the good things in my life, it made seeking the silver lining that much easier. Try it – I promise that you’ll walk away happier than you were before!

About the Author:

Kari is a writer for the medical device company, Flint Rehabilitation Devices http://www.flintrehab.com  where her experience has provided her with tremendous insight into the struggles that many stroke survivors face. Now, she passionately writes about stroke recovery and prevention in the hopes of helping the stroke community.

“When we were young, we were small, but we didn’t know it.” Lucy Schwartz

This is from the theme song by Lucy Schwartz for the TV show Parenthood. It was on for 6 seasons and just ended. I didn’t know about the show when it was on. I just found out about it recently and went on the hunt for it. I was able to see the 6 seasons on a combination of my Fire Stick, Netflix and On Demand. (All 6 seasons were available On Demand, but that requires one to watch commercials and I am not a fan of that activity!) They have also used the song Forever Young by Bob Dylan as the theme song.

The season 2 finale is called Hard Times Come No More. I would put this episode near the top of episodes which have had a lingering effect. One of the children has Asperger’s. Someone once said “Autism is no excuse for bad manners.” Likewise, that’s how I feel about a stroke.

In Hard Times Come Again No More there is a great example of the response of the child with Asperger’s. (His parent’s are his caregivers.) Intense emotional experiences are difficult for people with Autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with Autism/Asperger’s. In this episode, Max (the child with Asperger’s) is unable to relate to the feelings his aunt is experiencing when his cousin is in the hospital after a car accident The disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. Dr. Roy Sanders says of one of his patients (and an avid “Star Trek” fan) told him that “having Autism/Asperger’s is like being a Vulcan living among Klingons.”

Many people generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with Autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with Autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with Autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with Autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).

This was not meant to be an Autism/Asperger’s summary but rather to enlighten us all about something. I notice in that episode, Max’s father explains why he needs to be empathetic with his aunt about his cousin’s situation. My take on all this is that we can learn empathy. I was taught this as a child and Matt has this as a priority also. That has not changed with the stroke. It was important to me before the stroke. If anything, I am more empathetic after the stroke. The source of my stroke was an AVM which I had at birth.

I’ll see if I can explain sympathy and empathy. One accepted definition has sympathy denoting feelings of pity and sorrow for someone else’s misfortune and empathy denoting the ability to understand and share the feelings of another (having shared the same or a similar experience). Here’s an example of sympathy and empathy which has to do with sports/ML Baseball. When a player of a team gets hurt, they go on the Disabled List for a number of days. While I don’t wish an injury on any body, when it is a rival team, I am not sympathetic. (I know that’s heartless!) The team usually goes to their farm (training) system and calls up a player who can help the team somehow to fill in that spot on the roster. It’s not necessarily a replacement. I don’t know if any of us can be replaced. I have empathy for the team and all they need to decide in their effort. I like a good competition.

I’ll briefly detail why I loved the show Parenthood. Each TV show I watch provides a unique learning experience or a reason why I watch. It’s a boo-boo show and I usually cry at each episode. This is a good thing, as it gives me an excuse to cry. I said before they use two different theme songs during the course of the show. Any body or show that features a Bob Dylan song has to be pretty good. There are four generations portrayed in the show. This is an important part for me as you see the interactions between family members. Again it points to the fact how we are a part of something. I’ve talked about how I love Ray Romano. He plays a very different character in this series. I really wanted to see him in another role. I learned heaps about Autism/Asperger’s watching the show. The family loves baseball and has a closing scene which takes place on a baseball field! This is fitting since baseball is important to the family and one of the first scenes is about a baseball game. Parenthood is/was a great show! They had a great take on families and had several clichés.

That being said, there are ways that people can learn empathy. (Matt and I both think empathy can be taught.) In that season 2 finale of Parenthood the father explains to the son who has Asperger’s why empathy is important. We can “learn the rules” for how someone should act in an emotional situation. It’s not just caregivers or survivors, we are all ambassadors of good manners! As I’ve said before, it brings other things to light other than the stroke. Like everything else, one of the keys is persistence. I’ve been blessed to have a caregiver and partner like Matt, who loves and supports me. I have good cognition, a pretty good memory and an awesome partner.

One of my favorite lines from that episode (puts things in perspective) … “Boo Freaking Hoo”! Another title of an episode that I really like is “Put Yourself Out There”. I think that puts it all together. Here’s a great story about empathy and putting yourself out there. Matt has relayed this to me that when I was in ICU, my visitors were limited to “family”. When a friend heard this he said “I’m her brother” and he was let in. I love this concept because we often get hung up and only do what we think is right. In this case, he stretched the truth a little, but not much as we have new rules for family (and he definitely fits in that category!) I think this is great and a perfect way to show empathy. I describe empathy as maybe not having had that happen to us but we feel the pain. Most people (fortunately) have not had a stroke but wish to show their love and support. We feel the pain. That’s exactly what he did in this situation. I’ve said before my mother put together a wonderful book for me of all the cards and good wishes I received when I first had the stroke. Most of the time I was in a comma and couldn’t appreciate it, but years later (today), I see it and love it!

Do you remember Song of Long Ago by Carole King where the lyrics include this? “Cry, cry for someone, who just can’t be happy, and be glad you can feel enough to cry.”

Glad I can feel enough to cry


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