Complete High Quad Perspective

[petros5a]

i am c4-5 complete ..not movements below shoulders .the only things that i want is to be independent - to feed myself ,to hang my gf,..even if i make different staff there is always one 'why' or 'if i were good' inside me that make me feel sad..the lifestyle of para and the tetraplegic is huge different..i think the clinical trials should be first for tetraplegics ...

[Chaz19]

Originally Posted by Christopher Paddon

Thanks guys - you've really cheered me up

We are a cheerful bunch once you get to know us.

[keeping on]

petros, the only difference between us is the location of the injury. Yours is high and causes more damage. If what Dr Silver says is true, you will be a candidate for his treatment and many benefits will come to you and those like you. This is first ; you guys need help and we all are with you. Now Dr Silver has to be bold and go for human trials. It may not mean much, but we are with you and expect things to come to you.

Anthony

[Colin83]

Thank you, Anthony.

[petros5a]

keeping on i agree with you about our injury but others make us feel that because we aren't candi for many clinicals trials..any way i hope that Dr Silver make something for us

[anban]

At this point, I don't care about walking. I'd just like my triceps back.
My roommate at rehab was a c3. I'll never forget her joy when she showed her family she could lift her arm.

[Scaper1]

I remember showing my mom how I could wobble my head a little. She reached out in terror like it was going to fall off.

[BillMiller823]

With no feeling or movement below my neck, there are many things I cannot do. I require care or assistance for my physical needs (bowel, bladder, bathing, eating, respiratory care, transferring, transportation, housing, etc) essentially all activities of daily living, except for what I can do by voice, head, and mouth. I typically spend roughly 13-16 hours per day in my chair.

Physically, emotionally, and financially, it's not easy to have an SCI of any level, but from a "cure" standpoint, high-level quadriplegics require the most care and therefore consume the most resources. I don't like the "burden" that my SCI places on my family and taxpayers who support me. I really dislike being so dependent on others, and I am working to become as independent as possible, which without function-restoring therapies, the best I can do is work to be as financially independent as possible.

I can operate my wheelchair by mouth and computer by voice, both of which I'm grateful for. I can go places and do things, and the ability to operate a computer helps me be productive. I was able to go back and finish my bachelor's degree online, I'm currently working on my master's degree online, I've co-invented a bowling device for wheelchair users -- even power wheelchair users, and I also have a girlfriend with whom I'm planning a long life, regardless of whether or how long I remain paralyzed.

Of course I wholeheartedly agree that we need significant function-restoring therapies for chronic SCI, and believe some such therapies could very well be available to many of us by the year 2020. The longterm economic benefit of funding "cures" that enable independence versus paying for care is huge. And I cannot tell you how nice it would be to be able to scratch my own nose, feed myself, drive myself, and do so many things that able-bodied people often take for granted.

That said, since I'm paralyzed now and will be indefinitely, I choose to make the best of my situation, as best I can. I learned in rehab to focus on what I can do and not on what I can't do, and what I can still do is considerable. I have a sign on my wall that says, "It is what it is, but it will be what you make it."

Despite being a C1-2 complete quadriplegic and ventilator-dependent, I readily acknowledge and am grateful for many blessings (thank you God) but that doesn't diminish the need for therapies that can help us to become physically independent again.

If you're curious to know more about me and how I've approached SCI, see this on my website:

http://www.lookmomnohands.net/My_Ful...ort_Groups.htm

(Incidentally, I recently added a picture of my GF & me to the above page.)

May God bless everyone affected by SCI and the researchers who are trying to alleviate the debilitating effects.

Bill Miller

[Van Quad]

She's beautiful Bill! One thing I've noticed about this thread is that many high-level quads here are in committed relationships.

[ineedmyelin]

You should put a ring on it.