Vol1, Issue4

Volume 1, Issue 4 - April 2001

Lights, Camera…

By Vinny Distefano

First, I would like to apologize for being so late this month. We’ve been working hard behind the scenes to pull the documentary together in between a busy work season.

This month we’ll continue shooting the documentary on Angie and Traumatic Brain Injury. We’ve interviewed Dr. Tracy Rhodes and Dr. Scott Wittmer of the Complete Wellness Center in Winter Park, FL, where Angie is undergoing treatment. We’re also going to meet with another family, probably in May. Their son is also undergoing HBOT and has had wonderful results. We’re waiting for contact from a website in California, where a doctor may be able to help Angie with her physical therapy. He also has offices in Florida, we’re told.

Where We Stand

Trying to Make Sense of It All

When I began writing the script for the documentary, naturally, I spoke with Angie’s parents. They wanted everyone to know that this was an accident and that she didn’t do this to herself. I told them I wanted go back to the cross-streets, to show where it took place and to contact Larry’s parents to get a photo of the Harley, before and after. I thought I was prepared to go to the actual scene. After all, I was just going to film an intersection. We would explain what happened there and then move on to Angie’s recovery process. I began getting more and more nervous as I got closer. Trying to separate all of my feelings, i.e., feelings for my friend and her family, trying to compose myself to do a job, and wanting to tell a story and not hurt anyone in the process. Images of what it must have looked like were now flooding my head. And from an eyewitness, we were told then, what had occurred and how she tried to help Larry and Angie. We were also told certain facts that were never documented and so cannot be discussed, adding to our frustration. But errors in the police report will be examined and questioned. All of this will not take much time to tell, but it is important to set the stage.

Going Back

Are We Really in Charge?

Actually being there was quite surreal, like a dream or in this case a nightmare. All of the lingering questions were coming back, too. Why did this have to happen? Could I have done anything to stop it? I’ve tried to be as objective as I can, under the circumstances. So may tiny events had to add up. Imagine the precise timing in order to place the motorcycle and the car at that exact point in time for this accident to happen. There were so many chances that day to change the timing. Just a couple of seconds would have made the difference. But can we really change our fate? Are there simply too many of us on this planet and little space for errors? Or are we not unlike a record groove that follows one chosen path? No one can answer that question for another person.

Where To Go From Here?

She Knows…

During this busy time of the year for me, I can’t get to see Angie as often as I would like too or need to. I get to visit once or twice a week, either going to see her at her parent’s home, or going with the family to HBOT treatments. She is clearly more relaxed at home than at the nursing home, where daily frustrations still go on to our amazement.  We’re convinced she knows when she is home. That’s why I ‘m continuing research into getting a foundation started to help her and others like her. I want to staff a facility that would be able to care for young people recovering from serious injuries. After a person is able to respond, there are rehab opportunities available to them. But the medical community has dropped the ball on Angie and others like her. She will not be given care to prevent muscle spasms, twisting joints, pinched nerves, or any other measures to stop the painful pulling on her tendons and ligaments. Their only answer is to drug her to make her tolerate the pain. In their word, there is “no benefit” to helping her. She knows what they’re not doing and I’m convinced she is counting on us to get her the help she really needs to return to us. We all know Angie from two years ago won’t return. I know we can teach her again who she is and just to be able to talk with her again and hear her laugh would be a miracle.

We’ll catch up in May with all of the anticipate “action”. Till then, be safe…

Pass it on and tell a friend to stop by. Thanx

Vol1, Issue3

Volume 1, Issue 3 - March 2001 

Here We Go…

By Vinny Distefano

This month we begin shooting the documentary on Angie and Traumatic Brain Injury. We'll visit the Complete Wellness Center in Winter Park, FL, where Angie is undergoing treatment. We’ll also introduce you to the Doctors and Staff there who are so supportive. We'll take you home with Angie and visit her at the nursing home to show how different she is at home with her family. 

Where We Stand

Bringing It All Together

In past issues, we have touched briefly on a number of different topics. With this issue, I will attempt to bring it all together. All of this brings me back to the accident in August of 1999. Not a day goes bye that I don’t think of how, in the blink of an eye, so many lives were changed forever. I have tried to block out that day and concentrate on Angie’s recovery. But I will never forget getting the call in our office from her Mom, that Angie was hurt. I could hear immediately in her voice that something was terribly wrong. When I asked if Angie was OK, she said “No…”. Over the passage of time though, it is quite clear, that the original diagnosis, “…if she lives, she won’t be able to do anything…”, was just a textbook answer. I completely understand the statistics that would bring a doctor to this conclusion…”The vast majority of people with this kind of and injury…”, yada, yada, yada. It is so clear that another Force is handling Angie’s recovery now.

Just a Visit

Now You Don’t See It, Now You Do

It is hard for someone seeing Angie for the first time to get excited. At first you’ll see a pretty young woman. You may try to talk to her, but you won’t see her respond to you. You’ll see a tube going somewhere. It is for food and medications and it’s going directly into her stomach. You’ll see a family taking care of their little girl as if she were a child and not 26 years old. You will see the love and dedication to do what ever it takes to help Angie get back to us. You won’t see anyone giving up on her. You won’t see that Angie does have a way to communicate with us. You won’t see that she is holding her head up or “controlling” her head more. Only a slight change, but it is a change! Explaining things to her, like where she is or if she is wearing her wrist/knee braces, calms her down. We’re sure that it is hard for her to concentrate on one thought even for short periods of time. So it’s clear that her mind drifts. You might be talking to her and it appears she is right there with you. Then, she’ll lose focus, perhaps seeing or hearing things differently and she might become agitated or afraid. All we have to do, most times, is just talk to her and remind her to “Come back to your room, Angie”, or tell her that she is safe. Sometimes she just wants to be moved a bit, and arm or a leg, to be repositioned then she’ll change gears again and return. In the past, when she woke up from a nap, she would open her eyes and almost immediately, become frightened out of her wits. This look of total panic in her eyes would drive chills up my spine and pain in my heart. I’ve seen her happy and sad, disappointed and angry. I’ve seen her emotions emerge on her face and in her eyes. I knew if I was “in for it” even before she would say a word to me. It’s funny, but I used to tell her that she has mood eyes. They change color with her emotions. Well, she not afraid nearly as much as before the treatments. Her eyes will tell us that. We’ve been told that it’s not the treatments, that perhaps, she is just at a stage where she would have done all of this anyway. I prefer to believe we’ve been Led here. I’ll never know why this had to happen to her, but I do know I will go wherever it takes me to see her recover.

Upon leaving, you may thank God it’s not you in there and you may wonder how would you be able to do it. The initial pain of your child being hurt…the countless “professionals” telling you to pack it in and go on with your life…friends telling you to take some time for yourself …having to trust others to care for your daughter, knowing that when you leave, they may or may not be there for her like you would…and on and on. I’ll tell you this. Love and support and faith help to focus us. The  “why” question(s) begin take a back seat to the “how” question(s). How can I help…? That’s all that matters now. How can we make it easier for Angie to emerge?

Is HBOT real? Yes!

The Eyes Have It

We all believe that Angie’s mind is trying to re-map itself. We’ve all heard stories of the unbelievable things the mind can accomplish. I recall a scientist, working on mapping the areas of the brains saying, “The brain will be able to understand everything in the known universe, except for itself.” No one can tell us that Angie will never come out of this. It is out of their hands, now. We believe, as a result of her HBOT treatments, cells that were not damaged in the accident, but became dormant as a result, are being “turned on”. You would have had to have been there in the beginning to see all of the changes. Machines can show the changes in the brain by highlighting the areas that were previously inactive. Tests can show reflexes that had stopped responding, now returning. We believe she is aware of the changes in her body and mind, she just can’t yet get her mind to communicate with her body. It’s as if, and I’ve told her this on many occasions, as she gets closer to beating this, she’ll be getting a Sign that it’s now time.  She may be comprehending her surroundings better as well. It appears she knows when she is at the nursing home and when she is home with her family. She acts differently at home. She wants to be where the action is. It is uplifting and encouraging. We always knew her recovery would take time. As we begin shooting the documentary, we’ll be able to show how far Angie has come. Physically, she has healed. She looks like herself, though the lack of physical therapy has added to the hurdles she must overcome. Deep down in her mind, that’s where the HBOT can reach to light the fire again. There are wonderful miracles being spoken about with respect to this kind of treatment and some of them involve TBI. The June conference of doctors from all over the world, will gather the data from far and wide and should show the benefits of oxygen therapy for a whole list of injuries and ailments. We’ll take you into a day in Angie’s life, the day-to-day regiment of things that are being done to help her and the things that are not. We’ll bring you to “A Dive” and Joe Ford, the Director of Hyperbaric Therapy will show us how it works and ask Dr. Rhodes why it works. There’s a lot to cover and we hope to make some of it available to view on the web as well.

So, we’ll keep searching for the answers and keeping you informed. As always, keep praying for Angie and her family. I know she’ll want to thank everyone herself right here in the future. I’ve told her that we’re still a team, we still work together and I will always need her help. She had asked me a couple of years ago not to leave her behind if I ever left the job. I promised her I wouldn’t.

Pass it on and tell a friend to stop by. Thanx

Vol1, Issue2

Volume 1, Issue 2 - February 2001

And So It Goes...

By Vinny Distefano

We have had a number of requests to make this newsletter easier to print. It will now be possible to click the print icon to make hard copies.

Where We Stand

Working "Within the System"

I would like to get everyone caught up to where we are today and how we got here. You can read the beginning of the story on Angie  and in the January edition of this newsletter. 

Last summer, while Angie was going thru her first set of "dives" in the HBOT center, Barbara and Ronnie, Angie's Mom and Dad, bought a van capable of transporting Angie. That made it possible to schedule appointments when it was convenient for the medical staff and us. It was also the key to getting Angie home for the day on weekends and holidays, …home with her family. For now, she must still be brought back to the nursing home at night. The stress of relying on the Lynx system, a city run adventure of getting patients to and from appointments, forced their hand. Then, to make Angie more comfortable at home in her room, it became necessary to have a hospital type bed, with head and foot adjustments and a special mattress. It is the only way to find combinations of adjustments that let Angie rest and not become sore. Her room looks great, too. Pictures on the walls and party mobiles hanging on the ceiling, give her something to focus on. And a sound machine with waterfalls or ocean waves or forest sounds for her ears to sense. It all seems pretty basic. You just need to go to the doctor once a week. You just want to go home once in a while and be with the people you love and be able to relax. And what a difference when she is home. No people yelling in the halls, "Hello!" at the top of their lungs. No buzzers or paging "Dr. Howard, Dr. Fine, Dr. Howard." No staff coming in to attend to her when the mode strikes them instead of adhering to a posted schedule, a schedule they came up with. You can see Angie is less stressed and she is teaching us a new language. Slowly, we're starting to understand her “signs.” She let's us know she wants something done with body and head movements. When one of us thinks we've “decoded a message”, we pass it on to everyone else. When we figure out what she is trying to communicate, she stops the movements, as if to say, "Yes, that's it!" If you tell this to the staff, they give us the now familiar, "you poor sap" look. We can't get anyone to believe us that this is happening.

Just The Facts, Jack!

One For All. That’s Just The Way It Is.

But why would they? The book says she can't do any of this with the injury she sustained. Her case is all but closed. No more discussion of therapy to help her straighten her limbs. If you put your hand behind her knee, you can feel how tight she is. Her right leg will not lie flat. It’s always bent. We rub her legs and ankles and toes when we're with her, but the staff doesn't have the time or motivation to help her. Her wrists are turned in an un-natural direction.  But if you hold her hands and apply an opposite resistance, in time, you will be able to get her wrists in a more naturally straight position. We begged the staff to get braces to help her for many, many months. This tightness can't be without pain. Now, too little, the braces sit on a shelf unless we attach them. Oh, at times they might be quickly strapped on her with little or no care. All too often, if they are applied, they remain on for hours and hours, themselves causing pain. The system of caring for someone like Angie or a 98 year old Alzheimer’s patient is the same. It appears that no one, doctors and nurses and CNA’s alike, thinks there is a need for caring for young injured adults differently. Just business as usual, waiting to change the room over for the next client, I suspect. These people seem to be income-generating machines. Sure, every so often, during sweeps, the networks will do a story on the conditions in nursing homes. For people not visiting one, it doesn’t register. But then like magic, it all seems to go away. But for the families and friends of the people in these "institutions", it never goes away.

Much of the staff takes care of Angie consistent with her needs. Then when everything is starting to go well, the staff will change. I don't just mean shifts, I mean gone, good-bye, new people. This means educating the "new-bies". Whatever training they do receive, is woefully short of the care these people really need,,,to be treated with respect. We’re constantly seeing new faces and new languages. It seems unimaginable, but we've had CNA's taking care of Angie that seem do not read and/or speak English well or at all too good (pun intended). This could actually happen…………

Us: "Angie needed to be turned at 6pm. It's now 7:12pm"

Them: "Oh yes. Uh-huh"

Us: "King Kong is coming tonight"

Them: "Yes, (mumble some unintelligible words here)”

This sounds funny, but the point is that sometimes the answer has nothing to do with the request or the question. This is extremely frustrating when someone you love is in need and we have to rely on individuals who are less than qualified to care for her. We have logged many, many hours trying to teach people who have somehow passed a state exam. I admit I have lost patience with a few of them in the past. I once told Angie that I would never let anyone hurt her and if she ever needed me, she just had to call. I watched a nurse trying to "drill" for blood, turning the back of A’s hand black and blue, blowing veins, digging and digging. I can only watch them hurt her for so long. I give them a chance to show me they can do their job. Then, when Angie has had enough, my Italian/New York temper explodes. I've seen them trying to extend her arm to get a blood pressure cuff on or pumping her arm back and forth to "exercise her". Angie is still very strong and will resist if she is confused or hurt. If she doesn't want her arm straight, it won't go straight. I challenged a CNA to let me exercise her arm for a while to see if it felt good.

For a time, I had to stay away because these people would not come into the room to care for Angie if I was there. That really made me...well, I'll use the word, "Fangry." Now I'm causing Angie not to be cared for!. I told Barb and Ronnie what was going on and why I was staying away. They got me to calm down a bit. We were running out of staff and I had to try to be more patient and let these people do what they do. We’re all frustrated, but I won’t apologize to anyone. They were hurting Angie and that's all that mattered. We know, with the current system, there isn't much we can do. Her Mom and Dad understood what had happened to me. They had been there themselves. We decided to just pick up the pieces and make Angie comfortable once they left, which is the bottom line.

Now, couple this with a staff stretched to the limit… 50 patients, one nurse. One person requiring a minute more than the allotted time, will back up the whole schedule. This has led, on more than one occasion, to Angie getting the wrong medications!  We suspect at times, no meds. Over time, you kind of get a feel for what the medications are doing. A pattern develops. If the pattern changes, then we look for the cause. Is she responding to something? Pain? Sight? Sound? Is she more aware of where she is? Any of these could cause changes to her behavior. But we're pretty good at detecting if something is wrong. Once in a while, her skin will break out with hives. Or her normal daily nap pattern is interrupted with, what can only be described as, as a “get me the hell out of here” look and her being awake for hours on end, rocking her head back and forth. The doctors concede that Angie is in a state they call "locked in", aware but unable to awaken. They say she will stay there. We’re with her so much, we can see improvements, albeit small ones. The have decided that Prozac would help her mind cope better. They help her mind, but not her body? How will they explain to her later when she does awaken, “Well we didn’t think…”

In Need Of Repair

Working "Around The System"

Here’s a five-minute time slice. We have met a number of people while walking with Angie. Upon arriving back from one of A’s treatments, the odor of urine was very strong in the hallway. At first it seemed to be all around us, as if the floor had been soiled. But it was coming from a patient’s room. They were in need of immediate attention. A CNA was already in the room. Great! But surprise, she had only come to take the person’s food tray. Yes, imagine eating in this condition. And worse, they’ll let you. So we pressed the call button to ask for help. Again, to our surprise, the nurse asked, “Do you need something?” We silently pointed so as not to embarrass anyone and signed the universal “Can’t you smell it?” gesture. Then the nurse leaned over (apparently she doesn’t read “universal sign language”) and asked “Did you call for help, J_____?” How could she not know why she was summoned? The smell in the room! It was strong enough to reach out into the hall. Finally, a verbal request was made. OK, one down, let’s move on to Angie now. When we return from off-site trips, she needs to be hooked up to her food. Remember, she is still being fed thru a tube in her stomach. The nurse now arrives with the wrong food. The formula was changed about three weeks ago. “Oh, I didn’t know that” was the reply. Yes, it’s in the meds book, but who has time to read? So now to make the change, but her keys are missing! Don’t forget, this took place in the span of five minutes. There are 1440 minutes in a day. So things like this go on all day, day in and day out. Families like us are at least aware of it, and try desperately to reduce the mistakes, but what of other families? We’ll be talking to them soon to find out how they cope with the system as it is.

Help Is On The Way

“Creating Our Own System"

In January, Angie began her second round of Hyperbaric Oxygen Therapy treatments. It’s considered experimental, therefore not covered by medical insurance, at least not for head trauma. The data to date shows no benefit from this kind of therapy. At least that’s what we’ve been told from “traditional” doctors. But a conference of doctors with a vision from all around the world is being held this spring to compile information on HBOT and the results it’s achieved. We’ll report on it here as more become available. She will start with one per week. It's always a little scary to see her in the tank. You just want to hold her hand or hug her, but she's in there by herself and all we can do is talk to her and let her know that everything is OK. She really does well in there, though. Most of the time, she stays relaxed and sometimes she’ll catch a power nap. She does get a sedative before we leave the nursing home. I don’t recall her ever telling me she was claustrophobic, but now is not the time to find out. And the pressure from a simulated dive down to “17 feet underwater” has to be uncomfortable and a bit unnerving.

Getting Started

Spreading The News

We are moving on getting all of the releases to allow us to begin filming the documentary mentioned last month. We hope to talk to the doctors and staff in Miami and Orlando who are treating traumatic brain injury patients. There are other families out there looking for answers, too. Another young woman was brought to the facility a couple of months ago. Like Angie, she too was injured in an accident and relies on others for her care. We’ll start with these two young people, but it won’t stop there. The Hobbs family has recently joined MUMS. MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. It’s a group that helps families who are going thru this. More on MUMS next month. 

I was watching one of the true-life trauma shows on TV last week.  One of the doctors told the family of a seriously injured man, "God heals the wounds, the surgeon just takes the stitches out." With our support and God’s hand, Angie has perhaps taught her doctors what she already knows. Never give up. And keep fighting because prayers are answered in time. You just simply have to believe. Happy Valentine, Sweety...

Vol1, Issue1

Volume 1, Issue 1 - January 2001

A New Year…

By Vinny Distefano

Beginning a New Year always brings resolutions and promises. Some are kept. Most get forgotten or abandoned. We’re beginning this year with a bold new mission, starting with this newsletter. It will keep everyone informed on the many efforts on behalf of Angie and her family.

Never Give Up

As always, we will have photos and links to learn more about Traumatic Brain Injury, or TBI and Hyperbaric Oxygen Therapy, or HBOT. Our plans for this year include additional HBOT treatments for Angie and a filmed documentary to be aired locally and nationally to bring issues to light. We’ll be addressing specifically, issues arising from young adults being injured and unable to care for themselves. They need a different kind of care, in my opinion, from that now given to the elderly in nursing homes. For now it's the only option currently available to families faced with making countless heartbreaking decisions. Until something like this hits you personally, you have no idea what’s going on behind those doors. Simply getting from one place to another is a challenge. Transporting Angie to doctors appointments or just to go home for a few hours a week, was beyond the ability of the current systems to cope with, causing hours in delays or being lost in the system with no pickups scheduled at all. This led to medications not given on time or being skipped altogether, both of which could have had grave consequences. Therapy, stimulation, medications, skin breakdown, the list of worries for us are endless. Even if you visit daily, as we do, these must be monitored to ensure Angie is being treated well.

Long Term Plans

We will be looking at opening up a facility in the future to deal with the placement and care of individuals who currently are falling thru the cracks of our society. This will take some time, needing to involve lawyers, IRS, Medicare, etc., but I believe it is necessary.

When someone is in a coma or is emerging to a conscious state, stimulation is essential to awaken the mind. Families need to learn these skills, and be able to translate the scales for evaluating coma levels. The need for physical therapy is essential to all. This too, is a long-term task that must be done regularly. The doctors have more or less said it is not necessary for Angie to receive therapy. This has led to the muscles and tendons shortening making straightening her hands or arms or feet impossible without causing her terrible pain. We provide most of the physical therapy. But what of those families that can’t?

Where We Stand

Working "Within the System"

We will be detailing the day to day life, bringing to light problems from inside the system. We hope to have columns from staff, friends and family to get all points of view. There are many wonderful support groups for families in need. We will get more information and links from them here as well.

All of this is not just to point fingers, but to illuminate and educate. The current system is inappropriate for patients recovering, over long periods of time, from brain trauma. We have to work within the current set of rules and laws, of course. But we’re also looking at new ideas, new ways to treat these people, both medically and emotionally. It is so frustrating for us to go and visit Angie and know she understands us but can’t yet tell us what she needs or wants. That is not to say she doesn’t communicate at all. She will motion with her head and body posture if something is wrong. It is then up to us to determine the cause of the discomfort. Recently I told her, jokingly and in somewhat of a deliberate tone, "I can’t keep playing twenty questions with you, young lady. You’re gonna have to tell me what’s the matter!" At that point she looked right into my eyes and shot me "a look" and began to make sounds as if to say something like, "I am telling you! You just don’t understand the language I’m talking, Bozo!" Angie’s Mom saw and heard it too.

I think I can "get to her" because, at some level she still may understand that I am her boss. At work we would talk about work, life, God…I still do. I talk to her the same as I did before. She listens and if she seems scared or confused, talking to her and holding her hand helps to calm her. There are times when I’m not there when I can hear her voice or smell a familiar scent. The need to visit her becomes very strong. No, I’m not psychic. (Her Mom says I’m psycho…then gives me a big smile.) I love her family very much.

Angie, has been my friend, as well as an assistant, and I will do anything to help her and her family. Once upon a time, she told me that she wanted to be a teacher and that’s exactly what she will become. A teacher to others who will go thru this in the future. I have seen the progress and the determination on her face. You only have to look into her eyes to "see" her. The Angie we all love is there.

Holidays and birthdays and anniversaries come and go almost unnoticed now. Have a Happy Thanksgiving and Merry Christmas and Happy New Year all have new meaning. Our faith and love and belief that Angie will join the party again is the force that keeps us all working together for her. Thank you to all who have helped us.

There is much to cover in future columns and we hope to get feedback from you as well. 

If you have links that would be of interest, please send them too. See ya next month.

Special Day

On January 14, Angie turns 26.

Happy Birthday Angel!