Vol1, Issue7

Volume 1, Issue 7 - July 2001

Here We Go…

By Vinny Distefano

We’re heading for the stretch now. Filming of the documentary will wrap in August. Editing and getting it on the air will follow soon thereafter. The 2^nd International Symposium on Hyperbaric Oxygenation for Cerebral Palsy and the Brain Injured Child will be held July 25-28, 2001 in Boca Raton, Florida. The HBOT Online web site has articles on the conference and Stem Cell Therapy. Also, check out what’s new at the Ocean Hyperbaric Center website, too. They have case studies which document the advantages to HBOT. Angie continues her treatments and the journey to her recovery.

Where We Stand

The Answer Is Out There.

I’m sure, if you watch the news, you’ve heard about the controversy over stem cell research. Everyone, not just the President, needs to learn the truth about this research and the huge potential future therapies. This will be part of our future, with or without the Presidential stamp of approval.

CEDAR KNOLLS, N.J.--(BW HealthWire)--April 11, 2001--Scientists at Anthrogenesis Corporation (AnthroGen®), a New Jersey biotechnology company, announce the discovery of a novel method to recover stem cells from post-natal placentas. This method allows the recovery of a type of stem cell that appears to have the same functions as a traditional multi-potent stem cell but with unique characteristics. These placental-derived stem cells can be harvested in significant quantities and have the ability to evolve into a number of important cell types and tissues in the body.

The discoveries were made by a team of AnthroGen scientists through a proprietary process of working with post-natal placentas to mobilize and recover a broad range of stem cells in large quantities, as well asstromal elements necessary for stem cell differentiation. Post-natal placentas recovered after the safe delivery of a healthy baby normally are usually disposed of as medical waste. AnthroGen's patent pending technology covers both the stem cells derived from the placenta, as well as the technology used to recover them.

The technology promises to provide a plentiful, standardized source of stem cells for researchers developing therapies for life-threatening diseases including Parkinson's Disease, stroke, spinal cord injury and an array of organ failure syndromes. These multi-potent stem cells, which retain the ability to turn into many important cell types and tissues in the body, are vital to the fields of regenerative medicine and tissue engineering because they may be capable of growing new mature tissues such as brain, heart muscle, liver, bone and cartilage. In addition, utilizing the placenta as a reservoir of stem cells will enable researchers to work with an available, reliable, standardized source that will help eliminate the variability among stem cells obtained from various sources, and improve the quality of clinical research…

Stem cells are the master cells for human development and were first isolated in 1998. Scientists believe that these cells could be critical to curing such devastating diseases and conditions as juvenile diabetes, Parkinson's, Alzheimer's, cancer, heart disease, spinal cord injury, ALS, and many others.” (Excerpt from HBOT Online).

The Future Is Coming

A Matter of Time…

Some day soon, I hope, it will be full steam ahead on this research. We all get so excited when Angie does the simplest things. Ronnie, Angie’s Dad told me this little gem. Don, Angie’s brother-in-law happened to lean a cold mug against Angie’s leg. When she felt the cold, she jerked it away. She normally keeps her left leg straight or will slowly straighten it when we bend it or rest it on a pillow. Angie eyes are so much more expressive now, too. I wish everyone could visit her and look into her eyes and see her there trying to emerge. She appears to be able to concentrate longer on being with you when you talk to her. Her pupils change focus more now. She does turn to look at you when you talk to her. I still talk to her the same way as I did before the accident. Sometimes just shooting the s- - t, sometimes trying to teach her something new. For some time we’ve been telling her to blink her eyes two times if she can hear us. I see her doing it more and more and not just when you ask her to. She must understand it’s a way to communicate with us. Her body posture has changed significantly since starting her treatments. Sometimes she is hard to pick up because she is so limp and relaxed. She still shows signs of “posturing”, the involuntary muscle contractions occurring in brain injuries, but this might be due to muscle memory now or what she perceives as her new “normal” resting position.  She certainly does not seem to be uncomfortable when she’s “chillin’”. I tell her about all of the people praying for her and that we’re on God’s timetable now. Only He knows when she’ll be ready to join us again.

I’ve told her I need help with this web site, too. She has e-mails to return, columns to write and other people like her to talk to. When we worked together, I rarely had to ask her for help. She would always be there for me. If something was too heavy for her to help me lift, she would round up hotel staff and tell them to help me! She was always looking out for me, yelling at me if she thought I was doing something that could hurt me. So now, I just tell her to help me again…”Help me move your leg”…”Help me move your arm.” …”Come on, young lady, time to go to work. Help me straighten your fingers”. She will let you know when she’s had enough of a work out, or she just might go to sleep during it. I guess she figures I’ll leave her alone if she closes her eyes…not!  Till next month, be safe…

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

Vol1, Issue6

Volume 1, Issue 6 - June 2001

Where We Left Off…

By Vinny Distefano

Last month I probably sent a few people off wondering if I had completely lost it. The fact is I really believe there are alternative ways to communicate. Mainly because I have experienced them personally. A number of times in my life, in fact. Of course, I don’t mention them to many people. I know I won’t look good in a straight jacket.

Where We Stand

The Answer Is Out There.

When I was eighteen, I moved in with my cousins in the Bronx to work a summer job in NYC. We were getting ready for bed one night when one of us had the bright idea to see if any of us could read minds. Brilliant! There were no clues given and we were each allowed one impression. The only parameter was it had to be a real person, dead or alive. No one said anything for almost a half hour. Then I said to one of my cousins, the letters “T.J.” His face almost came off of his skull. Then I said Thomas Jefferson. He let out a yell of “Holy Sxxx” He said he was thinking of Tom Jones, but when I said T.J. and Thomas, he got a little creeped out.

Some years later, a friend said I couldn’t guess her middle name. I didn’t even know she had a middle name. We sat holding hands for about ten minutes and then I said “Belinda”. Her face went blank. She was speechless. She asked if anyone else had told me. I swore to her that I hadn’t heard it before. It just came to me. She just gave me an uneasy smile like something was wrong with me.

I have a photo hanging on my wall of my nephew picking apples at an orchard back on Long Island. In the next row over is the figure of a man, partially hidden by the trees, but clearly to all who knew him, this man is my Dad. So what. We always went apple picking there for the holidays. The only catch is that the photo was taken one year after my Dad had died. Children grow up so fast when they are young. My nephew was not that big when my Dad passed. I’m not even sure if he was even walking yet much less standing there picking up apples. My brother, who was there at the time, says there wasn’t anyone else in the field. I have inspected the negative for double exposures. The image is clearly on the negative with no trace of a double image. Was my Dad sending us a message that he’s OK and with us?

Pilots won’t say “UFO” in an incident report for fear of being laughed at or grounded. I hope you checked out remote viewing. The United States and Russia have, for many years, been experimenting with it with reported positive results from the participants. Our minds are truly the final frontier. I’m sure everyone has experienced something like these events before and just passed it off as a good guess or coincidence or a hoax. I think not. Something else is going on.

How To Get There From Here?

Finding The Keys…

So what’s all of this got to do with Angie, you might be asking? I’ve been searching the Internet for signs of life, life after an accident. So many of the phases she’s gone thru, seem to be new territory to the medical community. They won’t admit that they don’t know what will happen in the future. They look to the years of cases that have come before. Surely they must have seen miraculous recoveries, one’s they couldn’t foresee, one’s that the text say couldn’t happen. I think the last thing a doctor should say in his/her oath, is that if I don’t know the answer, I will admit to the patient’s family, “I just don’t know” and leave it at that. Let us decide what to do without the entire history lesson. Just give us the facts, please. And unless I’m buying a bottle of snake oil, don’t tell us what works and what doesn’t. If we had listened to the doctors, in the beginning, Angie would not be here. Yes, it is very hard to see her trapped inside herself, but none of us believes she will stay there. She has a long recovery for sure, but her mind is working. Perhaps there’s a way to tap into it…to reach her where she is and help her out. No one believed we could fly until it was done.

I remember “receiving “ a message returning home from the hospital on the first nite. He simply said, “She’s OK, just be patient”. It wasn’t audible words, but more of a feeling that came over me. But I clearly understood the message. From that nite, I have dedicated my life to finding a way out for her, and to help others with what we’ve learned. Angel-Hawk will be a foundation some day and Angie will be the spokesperson for it. I always remind her that she will recover to teach others. It may seem unusual, but I tell her I need her help. After all, asking her to help me when we worked together, always got her up and going. I’ll try anything to reach her mind and  “jump start it”. As long as it doesn’t hurt her, E.S.P, remote viewing, heck, I’ve even asked my Dad to see if he has any pull over there.J I’m sure The Big Guy is doing his best Archie Bunker every nite when I talk to Him, “Geeze, not you again?” There’s so much work to do. So much for me to learn. So much love for my friend. I said back in March, that it was clear another Force is guiding Angie’s recovery. That same Force has now put additional challenges in front of Angie’s family. I will do everything I can to help them, and lobby God for a “cease fire”. Enough already! He and I have some serious talk to get to. Perhaps I just need to rattle the doors of His house a little and pay Him a visit. Help has been coming in though, to Dr. Rhodes’ office to keep Angie’s HBOT treatments going. Thank you to everyone. Anyone can stop by to see her and talk to her. Just get in touch with us for directions.

Till next month, be safe…

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

Vol1, Issue5

Volume 1, Issue 5 - May 2001

Welcome

Surfing the Country…

By Vinny Distefano

This month has got to go down as one of the busiest so far. After having seen a documentary on TV and contacting their website, we’ve been in touch with folks from all over the country. More on this later in this issue. Angie is continuing to receive HBOT treatments and still progressing. That is, she is not staying in one place or losing any of her gains. Her attention seems to be more focused, at times, better than in the past.

Baby Steps

One Connection at a Time…

It seems clear that she recognizes either voices or faces or both. I judge this by the way she reacts when I visit her. If I “sneak up” on her and don’t let her know I’m there, I catch her alone with her thoughts. Unless she’s uncomfortable or in need of attention, she’ll usually stays pretty still. When she hears voices though, she tries to interact by moving her head and mouth. But when it’s someone she knows, she’s even more deliberate. I’ve done the following “experiment” over and over, and I always get the same results. If the CNA’s or nurses are in attending to Angie, I won’t let her see me and I won’t speak to her. I just observe her with the staff. She may fidget and fuss because she knows something is going on. I hope she understand they are trying to help her… to fix what’s wrong and make her comfortable again. When they’re done, she usually settles back down. She still hasn’t heard my voice or seen me. That’s when I tell her I’m in her room and walk over to her. I always tell her she’s not dreaming and I’m right next to the bed. I’ll tell her where I am, left or right, but I don’t get in her line of sight. Then, I tell her to turn her head and look at me. I keep talking to her reminding her, very slowly, to “…Stay in your room. Don’t run away from me. Don’t be scared. You’re safe here. Come and talk to me.” I watch her expressions. They’re different from when the staff was there working on her. Nothing she does happens as fast as her reactions to just talking to her. She struggles, but she will turn her head and she will find me. Now I move to another spot and do it all over again. Same results. I always tell her to go slow, to take baby steps and not to get upset. I tell her how great she is doing. I work with her only when she “feels” like it. Everyone has days when they don’t want to be bothered. On those days, I’ll just hold her hand and talk to her about “stuff”. Last week, I was moving her pillow and my arm was supporting her head. She turned her head into my arm and stopped moving. It was almost like I was hugging her. She was so calm. I just left my arm there and talked about her getting better…each day…getting closer and closer to her breaking thru. We stayed like that for a good 15 minutes, until she started closing her eyes. I laid her head on the pillow and rubbed her head till she nodded off, just telling her not to be afraid and how much everyone loves her. The calming reaction to her Mom and Dad’s voices seems to show a level of comfort and security in her face, too. We’ve all noticed these changes. As long as she keeps taking those baby steps, we have to believe she will win this battle.

Friends from the Left Coast

Heidi’s Story.

One nite, I came across a “True Hollywood Story” about a young stuntwoman who was hurt badly in a stunt accident. Her name is Heidi Von Beltz. Her website is www.FollowYourHeart.org .Her story is somewhat similar to Angie’s. Her doctors telling the family, “It’ over”. Medical and legal struggles. I wrote to them asking if they knew of a doctor who would listen and help us with Angie getting real physical therapy. They told us of the doctor working with Heidi. He is in California, but he might be able to direct us to someone in Florida. Together, they are determined to getting Heidi walking again. She has come a very long way, twenty-four at the time of the accident, sixteen years of therapy, I believe, and she is proving the doctors wrong.  Her site is also an organization that helps others as well. My goal is that Angel-Hawk will some day follow in that path. Ok, so Christy & Heidi then led us to Melanie Griffith’s web site Melanie Online- First Peek Home which took us to www.OneWorldLive.com. A great deal of information, but still not definitive answer to our question. So back to Christy I went and from there a link to Dr. Cory in Ft.Lauderdale. I’ve been in touch with Dr. Cory to explain to her Angie’s situation. We’ve e-mailed each other and I hope to speak to her soon. I know Barbara, Angie’s Mom, has spoken to someone at the Doctor’s office, but she could not get thru to Dr. Cory herself. I know Angie is not the first person to be challenged in this way. Somewhere out there is the help we’ve been looking for. And if Angel-Hawk needs to lead in this area, we will.

Waz Up?

Lights…Camera…

I met briefly with Tom & Ouida Sykes, and their son Jason, a few weeks ago. We’ve met in the past at the Wellness Center, but now their story will be included as part of the documentary. Jason has a link on the Angel-Hawk Newsletter. Mat Spaulding, who was instrumental in getting this project started, and I, have been swamped with work these last couple of months. While we stay busy in Orlando, Mat also works out of town. We are both committed to getting this film “in the can” by the end of the summer and in the hands of a broadcaster. We meet countless numbers of people coming into Orlando for conventions. Thanx to Ronnie, Angie’s father, we now have cards to handout to folks who ask about her. He has put the Angel-Hawk.org website address on both of his vehicles. I have put it on mine as well. More and more hits are being registered on the site.  As more people find out about it, the word will spread further and further around the country and maybe the world.

 

Where To Go From Here?

God Only Knows… 

If you listen long enough, someone will say, “…miracles do happen”. We’re told we can’t know why things happen, just that they are “God’s will”. And that “…prayers do get answered”. I also know, I can’t sit and wait for the answers. Every day, I’m thinking of something else to try, someone else to call. Angie is never far from me. I “take” her with me were ever I go. I talk to everyone about her. Maybe someone will know someone. I talk to her as much as I used to when we worked together. Not out loud, of course. That would be crazy…J. Maybe I can reach her on another plain. Is it possible for minds to communicate over distances? Twins have been known to feel the others pain, though separated. The government has done experiments in remote viewing. Look it up on the Internet. It might be possible to let your mind drift to another place. Is Angie doing this when she seems to leave the room? Can I meet her in another “space”? I am exploring all possibilities. It has been said that science will not be able to understand exactly how the brain works. It’s like trying to understand the concept of infinity. Space is said to be infinite. That means, every time you think you can’t go any further, you just take another step. It just keeps going on forever. It’s incomprehensible. The brain is just a human organ, like a heart or lung. But add just the right amount of chemicals and some electricity and viola, a person who can think, reason and try to understand its own existence. No one knows its limitations or even if there are any! Things that may seem strange or off the normal path to others, must now be considered and not simply dismissed. I don’t know where I’m being led. I only know I will find Angie at the end of it all one day. I end every nite with a prayer for her and her family. And to show me the path to take to help them.

Till next month, be safe…

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

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...