If you were to look at Ryan, you’d initially think everything is just fine. Physically, he is the picture of health. Granted, his muscles don’t have the fine cuts in them that were present two years ago, but his mass is still present. He is a strong man, no matter his condition. He works extremely hard every day and it shows.
I suspect he is more physically active then most men his age. This keeps him lean and tone. He certainly leads a better lifestyle, absent the college food and parties. His challenge is he is not able to do resistance training (pump iron). The most I can do for him is to place him in various positions so his bones bear weight, hopefully improving density.
It’s one of the deepest frustrations for me to look at him and see a physically healthy young man, without the means to use this capacity. One way I describe Ryan’s condition to those new to his story is that all the hardware works, but the software is damaged. In Ryan’s case, sadly, it’s the operating system. It seems there is no warranty on damage caused by negligent abuse.
I’ve always felt that consistent Speech Therapy (which should really be called “Sensory Therapy”) in concert with physical therapy is key to any chance of recovery. My belief is these must be integrated. For example, Ryan certainly benefits from the feel of a baseball in his hand (very familiar to him) or the physical motion of bringing his throwing arm sweeping down (through the pitching motion). My point is, why not combine these (I do)? Why is there such a division of duties? Ryan has probably throw a baseball a million times in his life and this must be locked deep in his mind. It’s an activity done so often he didn’t even think about it. Anyhow, this is just one example that I wish I could impress on the therapeutic community.
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I am giving this a lot of thought lately. To the point where I’d like to create a system of interactive “buttons” that could be used in the most basic of form (and expanded upon later). They already exist and I’m angry at myself for not doing this sooner. The buttons (about the size of a pancake) interface with a computer to give audio feedback that I can program.
Perhaps this is nothing more than two buttons, one for “yes” and one for “no”. I could mount these to each side of his wheelchair headrest and ask yes/no questions. Turning or leaning his head one direction or the other (if he is mentally able to understand) then allows the computer to answer for him.
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Sue already thinks I’m a bit mad and this certainly won’t help disprove her belief. I’m not sure what makes her think this of me.
Anyhow, please excuse me while I put on my white lab coat, goggles, and rubber gloves and slip down to the dungeon.
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We’ve developed button physical therapy devices for Grant and could probabbly help you out with some for Ryan. Let me know if you want a demo and I can show you what we’ve designed and think of ideas for Ryan. Our system is not hooked up to a computer but uses household devices for stimulation, like turning on a fan, light, doorbell, etc. Let us know if we can help….
Have you connected with the folks at the Virginia Assistive Technology System (VATS)? They may have simple communication devices to loan. Then you can see what may work for Ryan, what won’t, and what you could improve upon.
I don’t know much about VATS, but I used to be the north-central coordinator for the West Virginia Assistive Technology System (WVATS), and I would have been out to your house in a heartbeat to find out how I could help you.
Wish I could “Like” several times on the above comments!!
Wow, there are a bunch of smarty pants on this sight. I’m not sure I can match their intellect but I can agree with them. I think you are on to something and I think the timing is right. Keep on keep’in on Ken. I would bet Sue loves the fact that you are a little mad and I bet she banks on it.
Sensory therapy in conjuction with physical therapy–yes–do it, however you can figure it out. Just think, just as you have kept Ryan’s body in great shape……you can do the same with the mental apparatus as well, to whatever extent he is able, or becomes able…..Why not? Perhaps you were not meant to ‘come on this’ sooner–maybe Ryan would not have been able to participate before now, i don’t know. Keep giving him things to hold; you talk to him everyday…….did you tell him about kari calling you King Kenny-Face? Any word from IBRF….he was moving his thumbs, he turned his head when someone nuzzled up next to him and he was trying to get water from his shower in his mouth…..I see these as promising things…..Maybe his synapses have healed by now in a way that they are trainable again? Ken, you stay the course….develop your ideas……hey, they thought Franklin was ‘funny’ when he discovered lightening with that kite of his. Don’t be deterred, forge ahead–because you don’t really know that this would NOT work…..look what you have done with his body. I say, go for it. I’ll continue to pray, you keep on trucking. Love u Ryan xoxo Annie
I like that idea. Go for it. One never knows. There is so much to learn about the human brain and neural pathways. Neuroscience is developing faster than most people think. And biotechnology is advancing into other worlds. My prayers continue for Ryan.
consider contacting an occupational therapist who specializes in disabilities- they are often terrific at developing switches for communication or activation of objects taking into account a person’s physical capabilities. they would have a wealth of knowledge as to where to start researching communication systems also. OT’s who work with children with special needs also often have specialized skills in sensory integration therapies which sound like what you are talking about. sometimes the therapists who only work with adults do not always have these special skills so if you can research online Sensory Integration therapy you should be able to find a list of local OTs. •The American Occupational Therapy Association may be able to help you find a local OT. The AOTA website also lists accredited university programs and provides links to state OT associations. The state contact person may be able to put you in touch with an OT who specializes in sensory issues. hope this is helpful
How exciting, Ken, and if anyone can figure this out, it’s you!! Another avenue to explore is the use of eye blinks –I think there may be some type of assistive technology for this. One thing I know, if there’s a way to crack the code to foster and assist communication with Ryan, you are the person who can do it.
Please let us know how we can help. We are all very eager to hear what Ryan has on his mind. No doubt there will be some (large) expenses involved in procuring this technology. But it’s more than worth it: the words, “Mom” “Dad” “Kari” and “I love you” could be just around the corner.
Wow!!!!
Love & prayers, Paula
p.s.
” Anyhow, this is just one example that I wish I could impress on the therapeutic community.”
It seems the therapuetic community, as skilled and knowledgable as it is, does have its limitations. The fact is, you are forging new paths into the realm of traumatic brain injury treatment. As Vicki said, your ideas, innovations and dogged pursuit of knowledge don’t just help Ryan, but all the others who come here looking for inspiration, help and hope.
I’m sure you have a big notebook full of all the things you have done and hope to do to promote Ryan’s healing. I imagine someday this may become a “boilerplate” to help change the way TBI patients are treated. Right now they seem to be practically written off because few have the time, energy, will, intellect, strength and power to keep working the problem.
Keep blazing the trail, Ken!! This is how extraordinary breakthroughs are made, and we’ll be here cheering you on and continuing to believe in the miracle we call “Ryan.”
I can tell you there are no “legitimate” books out there that give ideas to those dealing with loved ones with TBI that I have seen. There are a couple of those who recovered, or how music might play a part… but the every day ideas of nutrition, how to make expensive “disability” equipment really work, how to really care for skin breakdown, how to deal with seizures, etc. just does not exist. Most that I know of, make it up as we go. There are a couple of books out there (and some in the works, I think) of “how I managed to survive dealing with a loved one with TBI” but nothing practical on how to take care of one. That is what the TBI world needs… Practical solutions. How much time have we all spent on Google just trying to find help!
Ken, on the No button, use the international symbol for no, or a big N and a big Y that Ryan could feel so that he has one more thing to help. Here is one more thought that might be interesting. Apparently sign language is easier than words for those that struggle with communication. (Downs kids for example can be infinitely less frustrated when they can sign what they want rather than have to put it into words.) Play with a few words in sign language that Ryan can feel you help him make. Things like ball, shower, etc. It would be interesting if you can tell he is starting to try to communicate with you. Here is the dictionary if you want to play with a few words. http://www.lifeprint.com/dictionary.htm
The sign for “love” is made by crossing both hands over your heart. (Middle of your chest.) Your hands may be closed or open, but the palm side should face toward you.
Signing love here, Ryan, for you and your family.
Ken, If anyone can do something like this ,for sure it’s you. Go for anything that will help Ryan and you’ll succeed. “Mad scientist “maybe but more a deeply,loving ,concerned Dad who will do whatever it takes to help Ryan get better. . Good Luck!! Say hi to Ryan L Gail
Ken, I see you not only as a visionary, but part mad scientist as well. Sometimes it takes both, and we are with you all the way!
“One who walks the road with love will never walk the road alone.: – C.T. Davis
Always here with love, hope, faith and prayers.
Never give up! What ever you do not only helps Ryan, but it helps others. I suspect (this will probably get me some more thumbs downs) that you are a man who has spent his life thinking he was not educated enough or smart enough, but in reality, you have a highly intelligent, perhaps genius,
mind made for a time such as this. One of my big criticisms is that those who “invent” things for the disabled or impaired or whatever the current PC word is, have never HAD a disability or been near one and just like men designing houses, have no clue as to the function of them. I can’t wait to see what you come up with. Since I follow many TBI’s including my own aphasic son, I can think of many who would benefit.
Just remember to keep the word “patent” in mind. You never know!
Steve Jobs would be so proud! Go for it!