Four years ago on Halloween my wife Julie, 31, was enjoying a night out with friends. It wasn’t until the next day that I found out Julie was in the hospital after suffering a devastating stroke.
All night I had the worst feeling, wondering where my wife was, why her phone was off, and if something was seriously wrong. I thought she was going to meet up with us and take the kids trick or treating. To this day, all I know is that Julie was put in a bed and left there until she was taken to the hospital the next night. What should have been a fun evening ended up changing our family’s life forever.
Upon arriving at the hospital, I learned that Julie’s doctors believed she had the stroke 30 hours before she was admitted to the hospital. With stroke, it’s critical to seek medical attention right away — within a three-hour window — as it may minimize the long-term effects and in some cases save lives. Given the delay in Julie’s treatment, the doctors weren’t optimistic that she would survive. Thankfully, Julie pulled through and was able to come home after about a month.
Life at Home
Before suffering a stroke, Julie loved her job as a real estate agent and our four children kept us both very busy. Coming home was a big adjustment. My wife’s stroke affected the entire right side of her body — from the top of her head all the way to her feet. She lost her ability to speak and lacks mobility in her right leg and arm.
At the time, all of our children were under the age of 15. So I not only assumed the role of Julie’s primary caretaker, but I was also taking care of our children. I was very fortunate to have a job that allowed me to make my own hours during this difficult time.
We assumed that our lives would return to normal within a year, but after a few months, we realized normal had a new meaning. Julie wasn’t able to clothe, bathe, or feed herself, and it was nearly impossible for her to sleep on the right side of her body. Ultimately, my wife’s mindset just got worse and she had no desire to wake up and get out of bed.
In addition to the challenges Julie faced during rehab and her day-to-day life, she was also in constant pain. Her shoulder felt as if it was always grinding, as if two rocks being rubbed together. If she could speak, she would tell you it’s way worse than that. You couldn’t even touch her skin because the pain was so unbearable.
Understanding Julie’s Pain
In the beginning, it was extremely difficult to communicate with Julie, and she was unable to express how much pain she was experiencing or where it was coming from. If we hadn’t been together for so long, no one would have been able to communicate with her. I know my wife and just by a look on her face or the tone of her voice I knew what she wanted to say or how she was feeling. To this day, as hard as it is, I’m still the person that understands Julie best.
Traditional treatments did not help manage Julie’s pain. Our primary care doctor prescribed medication and referred us to a pain management specialist. When we met with the specialist, they looked at Julie as though she didn’t need medicine, but kept feeding her more. I didn’t feel this was the solution to the problem and I didn’t want Julie to be stuck taking pain medication for the next 30 years.
One day, she started to suffer from pseudoseizures and anxiety attacks. I believe this was her body’s way of coping with the insufferable pain.
Finally, we realized that Julie’s shoulder was becoming the dominant source of pain. We tried everything from morphine to hydrocodone, e-stim patches and just about anything else. The pain medicine was horrible and did more harm to her than the actual stroke.
The only option we were given was to keep her arm in a sling and start physical therapy. When we visited the orthopedic surgeon, we discussed possibly inserting pins, screws, and needles into Julie’s shoulder, but ultimately the surgeons decided surgery was not an option because she couldn’t move her arm.
Following one of Julie’s rehab sessions, her physical therapist introduced us to an alternative pain management solution called the Bioness StimRouter. He said it was a small implantable device designed to provide pain relief for patients that didn’t have luck with other medications or treatment options.
When we heard about it, we were extremely hopeful and excited, but reserved because we had been let down by all the other options. As Julie’s caregiver, I have to protect her no matter what and as a result, I am always very skeptical about trying new treatments. She’s a stroke survivor and anything she can grasp onto at that point to make her life better means the world.
Controlling the Pain
Once Julie got the StimRouter, she was overjoyed with how much more she could use her arm and how well it worked to relieve her pain when it was on. Her pain has diminished significantly and she is taking a lot less medication. Her physical therapy sessions are way better now and she’s able to do things she wasn’t able to do before. Since having the StimRouter, Julie has not suffered another seizure attack.
The pain relief provided by the StimRouter motivated Julie to work harder on her rehabilitation and try to get better. Prior to getting the implant, she didn’t have that motivation; it was a downward slope slowly falling into the abyss with no way out. This product is her way out and gives her hope that as long as she has the device on, she will be okay.
This device gave her a second wind. Before this we were talking about amputation, seriously debating it. It’s a long road no matter what, but at least now there’s a light at the end of the tunnel. Julie is becoming more independent and is able to do simple activities that she wasn’t able to do because of the pain. Her physicians are also cutting down on the amount of prescribed pain medication — which gives us hope that she is on track to getting her life back.
Knowing the Signs of Stroke
A week before Julie’s suffered a stroke, her leg “fell asleep” and for four days had the tingling feeling of pins and needles. We went to the emergency room looking for answers and after a full work-up on the lower half of her body, the doctors couldn’t find anything wrong. Although they told us the Julie had an anomaly in her blood work and that we should see a specialist, they didn’t find any clots at that time to warrant her as a stroke risk and sent us home. Eventually the tingling in her leg went away, but I believe it was a pre-cursor of what was coming.
Many people think of an elderly relative or friend having a stroke, not a young woman. Through this experience with Julie, I’ve learned that as many as 10% of strokes are occurring in people younger than 45, with women being most at risk. I urge everyone to educate themselves on the signs of stroke — facial droop, arm (or leg) weakness, speech or sight difficulty and time — and not to hold off on seeking treatment because they think they will get better.
A Second Chance
Ultimately, we both hope that Julie has a full recovery. Realistically, I hope that she doesn’t give up. Although the device has drastically improved my wife’s life, there is still a lot of work that needs to be done. My wish is that she doesn’t get complacent with the progress she has made, and that she will ultimately get out of the wheelchair.
What’s most important is that Julie will be able to take care of our children. I’m okay with Julie never working again, but hope that she will be able to be a mother to our kids again, and help me raise them. I need my wife back, but our children need their mother back. She has one job and that’s to get better — and I’m all for it!
For other people in Julie’s situation that are considering alternative pain management solutions, I’d say definitely try them. Give it a chance and don’t give up, you don’t know what the future is going to hold and you have nothing to lose. For our family, we have been given a second chance. It’s giving Julie a second chance at being a mother, a wife, and having a life together.
Originally published at medium.com