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!
