Finding Our Voice After Stroke - When Recovery Opens New Doors

So much good news to share from the last few weeks! Let's break it down. . .

• Shawn was accepted in the RESTORE Stroke Study to improve the use of right arm
• Chapter to be published in a book about being an OT and partner to stroke survivor
• Interview for Stroke Warrior Radio coming soon
• More exciting news to come

Stroke Study

Shawn was officially accepted into the RESTORE Stroke Study (Rehab with Electrical Stimulation Therapy to Optimize Rehabilitation Effect) sponsored by Enspire DBS Therapy, Inc. Read about the study here: Clinicaltrials.gov. The Enspire DBS device was created by Boston Scientific. A DBS is a Deep Brain Stimulator and has been used for Parkinson's and Essential Tremor successfully for quite some time. They are now researching whether it would be beneficial for stroke patients who still have loss of functional strength in their affected arm. 

So how did Shawn get involved? After his stroke, we received much literature about this study from his rehab team. At first we said no, because the study was being conducted in either Providence (Brown University) or Boston (MGH) and required an extensive time commitment and many trips to and from. He also was continuing to see improvement and was hopeful that his strength would return on its own by continuing to carry out the exercises and functional tasks his at home therapist (me!) laid out for him. He was going to guitar lessons and driving his car, so he was using his arm to some degree. 

But mostly he is using his left for everything. He still would be unable to pick up a paint brush with his right hand or successfully cut a tough piece of meat with a regular fork and knife. He would never be able to pick up a tennis or paddle ball racket again successfully, or play frisbee golf again (he previously loved frisbee golf and was very good at it). So often he would remark that he was missing out and sorry that he would never be able to do those things again (and he's only 48 - a long time to not be able to ever do the things he loved). So when the ad for the study popped up again last winter he said that he would like to see if he qualified and find out more information about it. 

I wasn't sure that he would qualify. When tested by his therapists and his physicians they always remarked at how impressively strong his affected arm was. Yes there was strength there in the large muscle groups, but lack of coordination and dexterity and control in the smaller groups. There was still a lot of debility. The qualifications for the study indicate he had to be moderately to severely impaired.

So after the initial consultation by phone, they scheduled a video visit where they would assess his movement. He passed that initial screening and then was passed onto the program coordinator in Providence. We still had a lot of questions and concerns about the time commitment but she said if he ended up qualifying, transportation would be provided to and from every appointment and he would be compensated for the time. That made things much more enticing so we decided to move forward with the rest of the assessments. 

First up, he met with the research team and signed 31 pages of consents and was then assessed by the neurosurgeon who would ultimately be performing the surgery to implant the DBS. He studied his past medical history and his brain scans from his stroke. He did a full strength and coordination assessment as well and said that he would make a perfect candidate for the surgery. 

Next he had to be evaluated by a physical therapist who took him through a battery of standardized testing for baseline strength and coordination and comparison to his unaffected arm. This was the crucial test that would determine if he fell into the moderately affected category or not. The PT was able to tell him right away that even without fully analyzing the data that he fell well within the range of the study's parameters. 

Next up he was whisked back again for an assessment by a neuropsychologist who assessed his cognitive functioning, memory and mental health to make sure he met the standards for the study. Again, passed without difficulty. 

We got the call this week that he was officially qualified to be in the study. Next up, he has to undergo more imaging and pre-op blood work as well as a pre-surgical consultation with the neurosurgeon again. Then he will undergo the first of 2 surgeries. The first will implant the DBS lead (tentatively December 4) and will require an overnight hospital stay. The second surgery (tentatively December 11) will be to implant the neurostimulator and he can go home the same day. 

The Stimulator will remain off while he recovers from surgery (4-6 weeks). He will need to go back for follow up appointments during that time for additional CT scans and study visit. Then once healed he returns to have the stimulator turned on. 

Or not.

Right. . .as with any research study there has to be a control group and he has a 50% chance (literally the toss of a coin) of being in the control group which means the stimulator may or may not be activated at this time. 

I have to be honest, when this reality was revealed we almost changed our minds. Go through all that and then not even have the benefit of the DBS? But again the fears were allayed because even the control group will have their stimulators activated eventually, just after the therapy portion of the study is complete, which would mean double the time commitment. Because after the stimulator is (or isn't) activated, he will then go back and forth for OT 3x a week for 8 weeks for a total of 30 hours of in clinic rehab, followed by virtual at home therapy for another 12 weeks for a total of another 10 hours. At the end of the at home therapy it will be revealed to him and the team whether he was in the control group or not. If he was the control group THEN the stimulator is turned on and the therapy starts all over again. 

Wow. . .so much time. But with or without the DBS, all that therapy has to lead to additional improvement in his strength AND he gets paid to participate? Sounds good to me. It fascinates me and I am excited from a professional perspective as well as personal. 

The time commitment will of course provide challenges with his schedule of watching the dogs, but it usually is quieter in the winter months anyway. With the compensation for the appointments it also means he can have the freedom to limit his availability for taking on new dogs. We will just have to take each appointment as it comes and adjust his schedule as necessary. 

I will continue to update the @shawnsstrokerecovery Instagram page as we make our way through the steps of the study for those who are interested in following along with the journey! 

Finding Yourself After A Loved Ones Stroke - Chapter in Book

After the launch of the Instagram page, Letisha Living from Stroke Empowerment Instagram reached out to me, asking if I would write a chapter for her upcoming second novel, Finding Yourself After a Loved Ones Stroke. Letisha is a stroke survivor herself and her first book, Finding Yourself After Stroke was a big success. She travels throughout her country (Australia) speaking on stroke awareness and advocacy and promoting her book. I was eager to participate and completed my chapter and submitted to her and her editor for review. It was approved and accepted and I will officially be a part of the project. Once the book is complete and published, I will be invited to be a part of the virtual, international book launch party. I'm sure this will take some time for finalization but will certainly post updates as they come! 

Stroke Warrior Radio

The Instagram page has also led to a connection with Ralph Cortese from Stroke Warrior Radio. He and I have spoken via zoom and are planning an upcoming radio interview for his YouTube channel. After speaking with me, he has also invited me to participate in their weekly radio book group where I can read a chapter of the novel I am working on. Ralph is also a stroke survivor and works tirelessly to spread awareness and education on stroke prevention, recovery and advancements, so he is eager to talk to me about being an OT, an advocate, a partner to a stroke survivor, and an author as well as sharing info about the stroke study. 

There have been many more connections recently with other inspirational voices. Each person has given me ideas and direction to the path forward. Some connections have potential to develop into a future partnership and collaboration that I am excited to pursue! Stay tuned! 

Never a Loss for Words

 

It's been a minute. . . 

My last post was almost 4 years ago, but that doesn't mean I haven't been writing. Writing is always there. . .always a part of my life in some shape or form. 

Since my last post on this blog, during the pandemic I started another blog to help keep my OT colleagues motivated and relevant. I have written a memoir that I shared with close family and friends and I have managed a Caring Bridge page for Shawn that turned into a blog about his stroke recovery journey; all while working full time and using creativity in my work as a rehab manager and then divisional rehab manager to create educational content for our clinical staff.

So I have never stopped writing. 

A few months ago a new book started to take shape. This one was going to be part two of my memoir as promised to those who read part one. But it started to turn into something else. Something that has been brewing in the background for awhile. 

You see, after Shawn's stroke a new passion started to awaken. A passion for advocacy for patient rights and how to navigate the world of health care for those who might not know how things are supposed to go. Over and over I hear about stories of patients, especially stroke patients, who have gotten lost in the system. Those who might not have the right insurance, the right family support or the right background to get the care they deserve and the care they need. Our healthcare system is complex and patients are easily overlooked and underestimated if they don't have a strong voice to back them up. 

My novel, Loss for Words started to take shape based on this passion. Shawn lost his ability to speak for awhile, but he had me to be his voice. And I am continuing to be that voice and fight for his rights but also ready to speak for others. I want this novel to be a launching pad for a platform for stroke awareness and advocacy. 

But needing some validation that my ideas were good, I sent a few pages out to a few agents, just to get a feel for the current marketability. I actually got a very personal and thoughtful response back from one agent. She loved the idea. She loved the pages. But selling it without having a national following already would be difficult. She had one now that she was trying to sell that was similar in topic and voice and it wasn't going well. She suggested reaching out to indies to get it out there. 

At least I know she thought it was good. That was all I needed to keep the process moving forward. In the meantime I know I need to build the following. Build the platform first, then market the novel. I have the experience, the knowledge, the resources. I talked it over with Shawn since it's his experience that has started to get this ball moving. He has been always been private and I have always been careful what pictures and videos of him I share. I let him read the letter from the agent. HE was excited too. Once I explained my vision to him, he said "Do it. Go for it." He gave me his blessing to share his story. 

I started an Instagram page titled Shawn's Stroke Recovery where I will share videos and photos from the last 2 years that mostly haven't been shared before. I will share resources on stroke awareness including symptoms, risk factors, recovery expectations and clinical trials (stay tuned for more info on a clinical trial that is on the horizon for Shawn). I encourage others to share and get the word out. Maybe something will start to stick. 

I will also continue to update this blog, to bring it back to life and create posts related to stroke awareness and advocacy. I have several other ideas to get my ideas and platform in front of a few more audiences. Stay tuned, please follow and share. Let's get the Words out. 

In the meantime, catch up with Shawn's story on his Caring Bridge Page, follow the new Instagram page and for those who are curious, check out my OT blog mOTivate2go to follow more of my writing.