Winding Down 2001…
By Vinny Distefano
I hope everyone had a Happy Thanksgiving. I know this is a “bit late” this month. We’ve had a very busy November this year, so I wasn’t able to see Angie as much as usual. I kept thinking, though, how much she has changed this year, physically and mentally. We don’t have the medical tests to show these improvements in her mind and body, but you don’t have to be a brain surgeon to see it. Something is going on up there. All because we won’t throw in the towel as the “professionals” told us. She, - goes home, has gone “shopping” with her Mom & Dad, is make more sounds, moves her head, arms and legs, especially her right leg and can relax so much that it is hard to lift her. Her two+ year detour is slowly merging back to its original path. That path will now take different turns now, but I believe she has a special purpose and mission to fulfill. It answers the question, Why?
Where We Stand
The Answer Is Out There… Somewhere.
We have learned so much this year. I don’t know how many people are injured in this way, but what I have found out is that a great many more would benefit from personalize, one-on-one therapy. This is not conjecture or wishful thinking. This is based on our observations. For instance, Angie receives a whirlpool twice weekly. The stimulation to her mind and body is so evident. You could almost see the “thank you” on her face. She is so relaxed afterwards, she will be sleepy for a while. No drugs, just a simple whirlpool bath. ( The fact is, she needs considerably less medication. She maintains her blood pressure, heart rate, breathing, etc. All of the functions we were told she would not be able to control because of the injury to her brain stem.) This is a simple therapy that needs to be done daily. It only takes about a half hour. A half hour that helps her in ways we can see. After she wakes, it is so easy to work with her. Her fingers, her wrists, her toes, etc. are more relaxed and can be straightened and exercised without causing her discomfort. She’ll let us know when it’s gone too far and she’s had enough. But now give her another half hour the next day. And the next day…
Here’s my take on it. The only logical reason it’s not happening is that we don’t have “documented proof” to show the benefits of such a program. The only logical reason a program doesn’t exist is that we are fighting against the original diagnosis. The government programs that could help with the costs of therapy and rehabilitation don’t cover person like Angie. She has been place on a shelf with any number of other people with similar challenges. I would like to work with the nursing home to see if we can come up with such a program. It can’t cost any more money. They wouldn’t be able to implement it. Their hands are tied as well. Perhaps we can start with a 30-day,intense study. We can take range of motion measurements before and after. Document changes in concentration, movement and muscle tone. I am confidant we can show at the end Angie will be measurably improved. We notice these changes after just one whirlpool. Could 1 times 30 be better?
We’ve seen changes in her before and after her HBOT as well. She used to need a sedative to go into the chamber. She doesn’t require one now. Most times she’ll just close her eyes and relax, take a nap, or just “kinda chill” looking around. There’s a TV in her line of sight. Does she watch it? You tell me she’s not! If she gets her right leg in an awkward position, up too high or behind the pillows in there with her, most times she’ll correct it herself. Once again, when she comes out, she’s almost always relaxed making it harder to transfer her from the chamber to her chair for the ride back to the nursing home. And when she gets back to her bed, most times she’ll just relax and go to sleep for a while.
How To Get There From Here?
Changing The Future…
The short answer - I don’t yet know. That won’t stop her family or me, though. We just have to find someone out there who will listen. To that end, we’ve been searching the internet. Don’t get me wrong. We have some great people helping us here in Orlando. Dr. Rhodes and her staff have been wonderful at the Wellness Center. And we need the continued help of the nursing home staff. But I have found so many families plagued by the same questions and still no definitive answers. Why is this so difficult to get someone to listen? If so many people are experiencing the same problem, doesn’t that mean that one exists and something must be done about it?
So, it has become obvious…just do it! We have to convince the established medical community that its solution for people like Angie is outdated and needs to be overhauled. It’s time to listen to the families and find out what’s working and expand on it. This fence is going to start squeaking. Not in an adversarial way, but in an effort to combine resources and really make a difference in the lives of people with a traumatic brain injury. The time for “let’s wait and see” is now over. It is so difficult to see some you love, so close to a break through, being held back by an antiquated system. There have been extraordinary gains in medicine and stem cell research will take us to an unbelievable future.
Somewhere, one person or a small group of people got it all started. This is the path I mentioned at the beginning for Angie. God has altered the future she had planned. She is the one person who will bring about this change. We, her friends and family, are the small group to implement these changes. The New Year is upon us. We have over 700 hits in this website since we started last January. Not bad for word of mouth. The documentary, begun this past summer, will continue. I envision the end of part one having a “Thank You” from Angie. We still need your support with the HBOT treatments. Thanx to those who have helped. We’re still waiting for the follow-up report on the HBOT conference held during the summer. That could be a large hurdle overcome if the consensus shows what we already know…It Works!
To all, a Great Holiday Season.
Till next month, be safe…
Pass it on and tell a friend to stop by. Thanx
