Rollie Ritchie

APHASIA?......NOW YOU KNOW
I thought being a nurse for the last twenty some years and working for doctors for the last 13 years, that I knew it all, or at least I thought I did, but I found out how little I knew about one subject, the one that would inflict pain and suffering in my life and my husbands' for what would seem like a lifetime. Aphasia.

It was 11 a.m. on a Thursday morning and as he always did, he would call me at work or drop by. My husband Roland had just got off work from the fire department where he was a lieutenant of his shift and had been a fire fighter for 25 years. He had followed in his Dad's footsteps and he was living his dream. We were the normal middle-aged couple, working at our jobs, which we both loved, spending time with our grandson and planning for our retirement. Little did we know that Thursday morning August 5th 1999 our lives would change forever. Little did I know, that the last time I would see my husband speaking, would be that morning, when he popped by my office to say he was headed to his sisters to help her finish her packing. She was moving away. Little did I know, that would be the last time I would hear him say, "I love you" for a very long time.

As I kissed him and told him I would see him after work, off he went and I back to my work. About 30 minutes later the phone rang and it was my sister-in-law who was extremely upset and crying, saying something has happened to Roland. She said she thought he was having a reaction, as he has been Insulin Dependent since the age of 21, so I told her "don't try to give him anything call 911 immediately". I had dealt with Roland's reactions before, but not being there I did not want to take any chances, and I was not sure if it was a hypoglycaemic attack for sure. I told her I would be there as soon as I could. Thank goodness I had a co-worker to help me that morning, so I told her Roland needed me, tell the doctor what happened, and out the door I started running. I was hysterical the whole time I ran to my sister in-laws, taking off my shoes and running in my bare feet, so I could get there as fast as I could. I can remember my heart racing, and not being an exerciser, I thought to myself, I might have a heart attack. All I could think of was getting to my husband who was in trouble, about 4 blocks from the Hospital, where I worked.

I got there at the same time the ambulance arrived and when I saw him he was on the floor unresponsive. All I wanted was to get him transported...ASAP. In the ambulance I tried to talk to him. I knew he understood because he would respond to some things I was telling him. I knew this by his body movements. I knew this was no hypoglycaemic attack. This was serious. This was something I did not understand.

When they received him in trauma he was non-coherent, not moving his right side, and as I talked to him more and more I was hoping he would rally around, like he would from the insulin reactions. I became more and more terrified. What had happened to my husband? I told him he was supposed to pick up our grandson that afternoon and as I said that he got very restless. I knew he understood, because I knew going through his mind he wanted to know, if he had had Bradley when this happened. Was Bradley ok? His precious grandson. He became very agitated. Bradley and Roland have a bond that would melt your heart to watch. I reassured him Brad was ok, and then he settled. Now what I waited for was to find out what was wrong. Why was he not responding, why was he not speaking, why was he not moving, but yet why did he understand what I was saying to him? Then like a flash my body broke out in a cold sweat and the word STROKE flashed in front of my eyes. Oh no, not my Roland, he was 52 years old, thin, and in reasonably good shape. Strokes were for old people, not people his age. Anyone I had nursed was in their 70's and 80's. I had never nursed a young stroke survivor.

The neurologist confirmed my worst fears when he assessed Roland and told me, he had suffered a stroke and I had a decision to make as the results of the CT were back. Our time was running out if he was to administer TPA, the clot-busting drug that might save his life and reduce some of the damage the stroke had done. There is usually about a three-hour window of opportunity to administer this drug, and our clock was ticking. But the decision did not go without any risks. The major risk of the TPA was that it might also cause a major haemorrhage as TPA thins the blood. He may also die, I was told. I did not have much time to decide, a decision that might haunt me the rest of my life, if it did not turn out to be the results we wanted. I decided he would not want to live like a vegetable for the rest of his life. If this was all the quality he was going to have, he would rather not be here, but would want to be remembered as the strong man he was, not this limbless body on the stretcher, unable to do or say anything.

Within 3 minutes of the TPA administration Roland began to respond. His right side, which had been paralysed, started to move. His right leg first and then his right arm. Thank you God, I silently said, as colour was returning to his face. They wheeled him to Neuro-Intensive and all that night, with our family by our side, he slowly came around. He knew everyone, but as he tried to tell me what he wanted, and opened his mouth, nothing came out. No words, No sounds, he was left with Aphasia. The inability to speak. He understood everything we said but he could not get the words out from his brain to his mouth, it was like a short circuit. He knew what he wanted to say but nothing came. We were devastated. What was happening? He cried and I cried with him. He understood when I told him he had a stroke as he had been a paramedic with the fire department as well as a fire fighter for the first 15 years, but he did not know why he could not speak when the words were there in his mind to tell me. One thinks that if you cannot speak you just write down the words, but we came to find out as I handed him paper and a pen he could not write and he could not read. His whole communication center was damaged by the stroke. What were we going to do? He felt his life was over. He wished he had died and I could read the anguish in his eyes the horror that I saw, the pity that I felt for him, for me, for our family, will weigh on my mind forever.

Roland remained in the hospital for only one week. As he was up and walking the next day there was no need for extended physical therapy. We were elated by that and were glad he was coming home. But later I realized this was not a good thing. With only being in hospital for one week he did not get the speech therapy he needed so desperately. He as an outpatient, was not top priority, and we were struggling on our own, Roland getting more and more depressed and frustrated and I was trying frantically to find out where I could get some support. There was no Aphasia Group in our hometown. I had no computer at this time, so by phone, I contacted the Canadian Heart and Stroke Association and they were good enough to send all kinds of literature. I read it over and over and over and also read it to Roland to give him encouragement and new hope. We so desperately needed encouragement and I was to be his only source. I knew this, so I put my feelings, emotions and life on hold, to try to rebuild his broken world. His silent world.

Along with the little speech therapy he was getting and with not a lot of encouragement from his therapist, I decided I would not let him down. If he was unable to fight himself, I surely could. I knew my husband, if he was given the chance he could come a lot further than what was predicted here at home. I got flash cards, and I made up numbers and I got him to repeat words over and over. I got a tape recorder and taped words and he played them and tried saying them. I helped him relearn what a fridge and stove and cat and dog were and in time he did re-learn what a tree was and flowers and a window. He knew he recognized them as objects, but did not recognize them as a fridge or stove. He began to drive again, as he knew red means stop and green means go, He learned the words STOP and YIELD. As his memory had not been affected by this stroke, this part was easy for him. He knew how to drive to the grocery store and go to the fire hall and see the guys. He would drive to the drug store. He carried a card in his pocket that my sister had made, saying, "I had a Stroke and I am learning to speak".

Have you ever watched someone do something and feel like your heart will break because you cannot image where the strength comes from, for a person to do a certain task? I would watch him go up to a person he knew, in a grocery store or any public place that he was, not being able to utter a word, and pull out his card and show this to a person. My heart would break. Usually, the person was embarrassed for him and did not know what to say, or they just wanted to slip away because they wanted out of this awkward situation. My husband had more courage than I have ever seen. He had more determination than I could ever imagine and I was so proud of him. I would go over and say "Roland had a stroke and he is Aphasic". Only after hundreds of times telling people this, as Roland knew many people in our community, did I realize no one knows what Aphasia is. I could not believe this. They knew about strokes, and heart attacks and Autism. They knew about MS and Parkinson's and different types of cancers, but they did not know about Aphasia. Why was this?

We bought a computer the next year and not being computer literate as my husband had been, I started burning the midnight oil. The only www. my computer saw was www.aphasia.com. This was my lifeline. My only connection to the world of Aphasia. I was shocked at what there was out there for my husband, and nobody had told me. Aphasia did not just happen to a few people, it happened to thousands, and it happened to young and old alike. I felt like I had been living in the dark ages. My research began. Day and night, all over the world, I emailed for help. Desperate and feeling alone, I prayed.

My prayers were answered with a reply that I had stumbled on quite by accident from the Harold Goodglass Aphasia Center in Boston Mass. I got an email from Dr. Nancy Helm-Estabrooks. We were truly blessed. She cared about my husband. She wanted to see him. We had still been working at home very hard with his words and we were developing a sense of our own communication. We often said we could win any game show where you had to pantomime. We had our own communication going and it was working. Roland was not quite three years post-stroke and we were self-taught and self-educated in Aphasia. Now we would learn more. With much work we were scheduled to have an evaluation with Dr. Helm-Estabrooks, the Icon of the Aphasia world.

In May of 2002 we ventured to Boston, not knowing what was in store. He endured rigid testing for one week and at the end, the staff of experts was amazed by what he had, and could accomplish. Nancy told me if she had seen just his CT scans alone, she would have told me not to bother coming. They were amazed at what he understood, at his ability to walk and communicate, even though his words were very few. But more so, they were encouraged by his determination and stamina.

They wanted to see him back for a month in the fall and again in the fall of 2002 we found a place to stay, and back we went. These people became our lifeline. They were the greatest bunch of people I have ever come across. The caring and understanding that they gave us both, will always be embedded in our hearts and souls forever. We came home with new hope and with a new therapist only 20 miles away, set up by Boston, and we began a new journey.

Today it is almost 4 years since that fateful day and Roland has conquered his mountain. He can drive, bowl, golf, read and write words and his speech is coming slowly. It will still take time and work, but he feels at this point in his life, he is truly blessed. He feels now, that if he does not go any further than he has, he is truly lucky to be alive. He has adjusted to his world and he is content. This did not come easy, but with a lot of determination, hope and love for his family, he survived what he thought would kill his will to live. He still works every day on his speech, but he now realizes there is life beyond words. He still communicates with his now 2 grandchildren, his granddaughter Sarah, who he could only speak to just two weeks before the stroke took his words. He still enjoys his TV and his yard work. He wakes up every morning with a smile and a "good morning".

I wrote this article for two reasons. I want to give hope to the many thousands of aphasic people who are at the starting line where my husband was four years ago. I hope this story inspires you to never give up and keep working, because good things will come. Even though your life has changed because of aphasia, it is far from over. The key is to never give up hope. It is a slow process, but you will again communicate. There are many wonderful times ahead. I pray that with education and knowledge for the public, that no one has to say...... Aphasia you say? What is that? Now you will know.

Written by
Carole Ritchie
April 18, 2003

Thanks to Carol for sending in Ritchie's profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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