The Power of Hope

Stroke CONNECTION Nov/Dec 2003

I never thought a stroke could happen to a 47-year-old, charismatic bodybuilder like my husband Philip Jenkins, P.J. for short. And I never would have guessed that a stranger would offer us hope we needed to fight for his life.

P.J.’s stroke on November 20, 2002 was the most severe possible – a massive brainstem attack that resulted in “locked-in-syndrome” and a prognosis of “no hope”.

Now instead of preparing chicken and fish for my husband while he trains for bodybuilding competitions, I am preparing Pro Balance Formula for P.J.’s feeding tube. Instead of fending off the stares of women attracted to P.J.’s muscular physique, I’m now fighting with his HMO for his life, our life.

P.J.’s stroke is our stroke, our family’s. We were busy preparing for a big family Thanksgiving at home when everything came to a screeching halt as P.J. was rushed to the emergency room.

“Mrs. Jenkins, your husband is very ill,” the doctors told me. This is when I started adding words like basilar artery occlusion and massive brainstem stroke to my vocabulary.

For months afterwards, his once strong body was almost completely paralyzed. He could only blink his eyes. When he was stable enough to receive therapy, his doctors said he wasn’t making significant progress, so we did not receive funding for intensive therapy and other much-needed assistance. The doctors’ prognosis: “no hope.” We were simply told to give up.

But P.J. is a fighter with strong will and determination. He understood everything going on around him and was able to communicate with me using a spelling board. He told me he would get better, and I believed him.

One night while P.J. was in the hospital, I was frantically searching the Internet for any information I could find on stroke. I found a Web site: www.katesjourney.com. There I read the story of Kate Adamson. She had had a brain stem stroke at a very young age and was initially locked in like P.J. Because people fought for her, she managed to recover and lives a vibrant, active life. She’s now a spokesperson, writer and stroke advocate plus a mother to two children.

That night, I e-mailed Kate and poured my heart out to her. I told her our story, how P.J. needed rehab but wasn’t receiving it, that he was going to be placed in a nursing home at 47. I asked her how she had recovered. I sobbed as I wrote to her, “I need to see my husband’s smile.”

To my joyful surprise, Kate called me the next day. She had different words for us than we had heard from our doctors” “Never give up; there is always hope.” That day she mailed me a copy of her book, Kate’s Journey. When I received it, I eagerly read Kate’s thoughts when she was locked in. as I read, I realized that Kate knew what P.J. was thinking. I feared turning the page to learn more about how he was suffering inside. It was so painful to read, but it gave me a window into P.J.’s condition.

When I finished the book, I knew we were not alone in this struggle to regain P.J.’s life. Although we still had, and have a long road to find whatever recovery might be there. We were certainly not willing to quit.

Despite our desire to have P.J. moved to an intensive care rehabilitation facility, he was moved from the hospital to a nursing home 100 miles from our home. I stayed there on many lonely and painful nights, caught between my 12-year-old daughter’s cries on the phone for me to come home and my husband’s need for me to remain at his side. I was being forced to choose between my husband and my child.

During one such night, Kate called. I was sitting there with P.J., feeling alone and scared, and there was Kate telling us to keep fighting. She said, “It will be a roller coaster ride, but you can do it and no one can predict the outcome but God.”

Despite our hopes and pleas, the HMO would not budge. The doctors said he would never recover. But Kate came to the rescue. She referred us to a doctor outside our HMO that recommended P.J. go to an intensive care rehab facility. She also referred us to an excellent physical medicine doctor, who is a patient advocate and is helping us now. Kate even contacted public officials including senators to help us with our battle to get P.J. admitted to an intensive care rehab unit.

After almost nine months, P.J. was recently admitted to such a center, and we are hopeful. Since his admission, he has been given a pump test that delivers a steady dose of Baclofen to ease his spasticity. Prior to the eight-hour test, his muscles were so stiff, it hurt him to move. Soon after receiving the test dosage, he started moving his toes. We were so thrilled! He could pull forward and push back on the bed using h is trunk.

We are going down the road to recovery still awaiting the final outcome, but we are hopeful because P.J. has progressed far beyond the original expectation of the doctors. Recently, his prognosis has been upgraded by several doctors. At first P.J. my best friend and husband, could not open his mouth, move his head or any part of his body – only blink his eyes. After seemingly endless hours of encouragement, therapy and hard work, he can shake and nod his head, smile and raise his arms.

I know P.J. is improving through his own determination and through the amazing help of friends, family – even a wonderful stranger – who care enough to fight for him. Many others, including my sister Frieda, my mother Fanchion and other family members and friends, have provided ongoing support. The many employees at the government agency where P.J. and I worked for over 14 years have donated hundreds of hours in catastrophic leave and given us overwhelming emotional support.

There are still hurdles. For example, I have not heard P.J.’s voice since November 20, 2002, except for the voice mail on his cell phone. I want to hear him yell to me once more, “Margarita!” He hasn’t enjoyed a good meal since last November, but we are making progress in that direction. He no longer has a trachea tube or needs a ventilator.

Soon P.J. will come home and will begin outpatient therapy. Receiving the appropriate therapy continues to be an ongoing battle. We do not know the outcome, but P.J.’s life, our life, is worth fighting for. We have hope – from friends, from family, from someone who was once a stranger but is now a newfound friend – and that’s all we really need.