Stimuli

Taste/Smell

The first week of ICU, Damien was in a coma. Twice during Damien's ICU stay the doctors placed him in a medical coma. I did some research and found a few articles on how to revive a comatose person. The articles suggested using taste, smell, sound, and touch stimuli as means to revive the person. One of the suggestions was HORRIBLE. They suggested placing drops of Tabasco Sauce on the comatose person's tongue! Can you imagine a comatose person, aware of the environment but unable to respond (many patients have reported being aware while in a coma: Ron Houben, Geoffrey Lean, Sarah Scantlin, etc), having such strong hot sauce placed on the tongue? Feeling the pain and not being able to reduce the suffering! Obviously, we did not use the Tabasco Sauce.  They did suggest placing strong smelling liquids under the nose for the person to smell. We put peppermint/lemon/pickle brine and after shave on cotton swabs and had Damien smell these. Damien did not respond but we went through the process every evening.

While in ICU Damien was very protective of his mouth. That was the one thing he could control. He would severely bite anything that touched his tongue. One nurse was scrubbing Damien's tongue with medicine to control thrush when Damien clamped down. The square plastic sponge came off. The nurse worked very hard to get Damien's mouth open and the sponge removed.  Once Damien got home, we used different tastes. We had Damien taste sweet solutions, lemon juice, salty solutions, and pickle brine. We used a dentist block to keep his mouth open and the square sponges to swab Damien's tongue.

Because of many long intubations, scar tissue formed over Damien's vocal cords; therefore, he does not swallow food. We found, in the infant department, a small bag-like device in which we can place food. We put any type of tasty food in the bag: spicy, sweet, salty, etc. and let Damien chew on the bag. That way he works his teeth and taste buds. When he is through or he does not care for the food, he will remove the bag from his mouth or let it fall out.

An Aside

After Damien started eating solid food, he taught me a major lesson. He had food on his tongue and started to sneeze. I thought I could use my finger to swipe the food out of his mouth so he would not choke. The instant my finger touched his tongue, he clamped down. I really thought I was going to lose the tip of my finger. I could not pull my finger out because I might injure his teeth or jaw. So I relaxed as best I could and spoke to Damien about opening his mouth. Once Damien realized (probably after a minute but it seemed like 10 minutes) I was not fighting, he relaxed his mouth enough that I was able to remove my finger. The bite did not even break the skin - just huge dents just behind the first knuckle of the first finger. I never got my fingers close to his mouth again.

Sound

While in the ICU, we had Damien listen to tapes he had previously recorded. He had named one tape The Mating Call of the Vietnamese Pygmy Rat. On this tape were recordings of songs by Fear, Dead Kennedys, Mojo Nixon, L7, and Supper Suckers. He also included songs from John Mellencamp and Bob Dylan. His favorite Dylan songs were Lily, Rosemary and the Jack of Hearts and Hurricane. We placed the head phones on Damien's ears and let him listen to the tapes. One doctor thought it good that we played music Damien enjoyed rather than something I picked out.

The Psychological Corporation allowed me to use a computer and work from the hospital. Therefore, I was able to be with Damien during the day. After the first week, the nurses let me stay in the room to work rather than adhere to the three 30-minute visiting periods. Paula had to teach 3rd grade and driver's education so she was only with Damien a few minutes each evening. Paula would tape messages during the day and explain what she was doing and what was going on with the family. I would play Paula's tape so that Damien could hear her voice.

When I had a chance, I would read short passages to Damien. We had bought a book of Edgar Allen Poe's work as one of Damien's Christmas gifts. Damien enjoyed Poe and Arthur Colon Doyle (Sherlock Holmes). Twas a bit of cognitive dissonance for me to read Annabelle Lee to my comatose son.

We also used tapes of old comedic radio programs (Fibber McGee and Molly, Abbot and Costello, etc.). Another tape was of a current Star Wars radio program. We used stories with humor and sound effects as a means to reach Damien.

Damien was very proficient in Spanish. While in college he worked in a program teaching English to Salvadoran refugees.  He also enjoyed Curious George stories. So much so that he bought a framed poster of Curious George to hang in his living room. Therefore, we bought a Spanish presentation of a Curious George story for Damien. We also bought a Spanish disc of Don Quixote. Currently, Damien listens to these (and other CDs - Sherlock Holmes radio programs, Louis Lamour short stories, American short stories) prior to going to sleep.

Sight

In 1999, I took Damien to Ft Lauderdale to participate in hyperbaric oxygen therapy. Damien was staying at the Manor Pines Convalescent Center (an excellent institution). I was staying in a studio apartment at Lauderdale Towers. We had a great deal of free time on weekends. I wanted to expose Damien to more stimuli. Therefore, I took him to see a James Bond movie The World is not Enough. I knew there would be explosions, loud music and color. The AMC theater had a space identified for people in wheelchairs. At that time, Damien had a tank of a wheelchair. It was large enough to fit Damien yet was able to tilt back. I positioned Damien in this space for maximum exposure to the screen. I knew the light would stimulate his eyes even if he kept them closed. The sound stimuli were constant. I sat in a chair right next to the wheelchair space. Since then, Damien attends at least one movie a week. Friday afternoons the nurse takes Damien to the local theater. They usually see a humorous movie or an action movie (often they see a humorous action movie). Damien is able to watch the entire movie.

One doctor suggested we use a small flashlight to stimulate Damien's eyes. We would shine the light on his eyes as we moved the light from the left to the right. We would do this pattern for ten passes. Then reverse the path (from right to left) for the next ten passes. Finally, I would hold the light high and centered above his nose, then bring the light straight down almost touching his nose. We would do this at night so the light would be more obvious to Damien.

Dr Scheuler suggested we get Damien an EyeTreck device to view DVDs. These projection glasses were like viewing a movie in a theater. One of Damien's favorite movies is Serial Mom. We have the Monty Python Flying Circus TV series on DVD so we let Damien watch a 30 minute program. One viewing a day seems to be sufficient. Damien's brother has a large collection of DVD movies so our options are many.

Paula bought a device that uses an iPhone to view virtual reality movies. We adjust the device for Damien and turn him in the wheelchair to reach the various video positions. The main one he watches is of a man skiing down a mountain side. When we tilt Damien's head down, he sees the tips of the skis and they pass over the snow. At one point, the skier makes a jump and you can see what the man sees as he goes over the jump.

Currently, we use special sets of glasses prescribed by Dr William Padulla. One set is for regular use. One set is for use during therapy. One set is for "reading". These allow the interaction between the visual stimuli and the physical stimuli. The therapy glasses are thick on one side and adjust to the proper angle. We refer to these glasses as Damien's Mr. Magoo glasses. Damien uses the Magoo glasses during time on the standing frame and time spent on the Quadriciser. We also have him use these during any physical therapy sessions. The last set is for "reading" situations. While Damien is using this set we hold a simple colorful picture to his left. Once Damien focuses on the image, we slowly move the image to the right. At first Damien would lose focus at the midpoint. Now he is able to follow the image all the way to the right. He also tracks me as I walk from his left to his right when getting him ready for sleep. Next step is to get him to move his head to the right.

Touch

In the fall of 1999, Damien transferred from a physical therapy hospital in Austin to a convalescent home close to us. We found a masseuse who would come to the home and give Damien a massage once a week. We thought it important for Damien to receive compassionate touches to offset the constant probing, lifting and sticking received from the nursing staff. The masseuse would drive 45 miles one way to treat Damien. I would be there to help her position Damien as needed. At that time, Damien was very unresponsive so we did not see any reaction during or after the massage. Yet, I think it was good therapy for him. In Florida, the Manor Pines staff would give Damien daily physical therapy sessions and a weekly massage. Damien also went to Delray Beach to Ray Cralle Physical Therapy. Mr. Cralle would work with Damien for 90 minutes once a week. Mr. Cralle used myofascial release treatments when working with Damien. He would also stroke Damien's arms and legs three or four times with a small block of ice. After that, Mr. Cralle would use a vibrator to stimulate Damien's fingers and toes. All of these were very good touch stimuli. The final part of each session was to have Damien sit in a chair and be spun to the right and then to the left. He would spin about 15 to 20 times, and then stop. We would then look at his eyes - which were moving quickly to the left and right. We continue with these stimuli at home. Mr. Cralle suggested we read Smart Moves - Why Learning Is Not All In Your Head by Carla Hannaford, PhD. It is a very informative book and provided us with a great deal of information about this therapy. You may still find this book at Amazon.com.

Once we got Damien home from his first visit to Florida, we search for a local masseuse. We found Terry Lewis at Therapeutic Massage and Spa. Terry includes several massage techniques during her therapy. Damien has had a massage with Terry each week for the past 15 years; missing only when we are out of town. Terry is very impressed in Damien's progress. Now Damien gives her a big smile when he recognizes her at the start of a session. Some of Terry's therapists speak Spanish. They also get a reaction from Damien when joking with him in Spanish.

The AMA is debating the benefits of using stimuli with comatose patients. Both Pro and Con offer a vigorous defense for their point of view. I do not know if it helped Damien recover from a comatose state or not. However, listening to his mother's voice and/or his favorite music did not hurt. I do know that having a variety of stimuli has improved Damien's existence. They give him a way to respond to his environment. He smiles in recognition. He laughs at jokes.  It kills me, but sometimes his facial expression indicates stress and tears slide down his cheek. Damien can get irritated. Once in awhile when I am removing the phlegm from his Montgomery Button, Damien decides he does not want that and he swats (forcefully and with intent) my hand aside. I just smile, talk to him and finish the task. I think our job is to enrich Damien's life as much as possible and these stimuli are tools that help make this possible.