I’m a hoot at Town Halls. Teabaggers don’t know what to do with me.
My son just informed me that technically cutting down on cheeseburgers doesn’t make me a vegan. But at least I’m headed in the right direction.
Damn kids!
Tonight’s episode of House is a repeat about a patient with Locked-in Syndrome. Although not a documentary, this program generally tries to be reasonably accurate, so I was wondering if you saw it and had any thoughts about it.
I used to watch House, but it really got to be three near death experiences and then everyone’s cured by the end of the hour. So I didn’t have the heart to watch that episode.
So gonna be crazy redundant here…but my God blinkie this thread has been amazing.
I’ve read everything up to this point in one read, all the while reading bits and pieces to the two ladies in the room with me…their response being “Is this guy for real”. Like I, they are amazed by the adversity you have gone through, and are coming through it with beyond flying colors.
You, my friend, have taught us all a lesson on living through adversity.
I think I speak for everyone when I say: Our lives have all been made better having read this thread, and having known you in our life.
Thank you. Thank you. Just…thank you.
I just wanted to say, as someone who shares a very tortured relationship with religion, thank you for posting about your angels. You brought me exactly the kind of tears I needed today.
Thank you for being an inspiration and sharing with us. It means so very much.
I found this today http://www.eyewriter.org/ regarding an ‘eyewriter’, technology with which I was unfamiliar. Is this the kind of thing you use?
Great thread. I really appreciate you talking about this stuff.
Your willingness to share this here has inspired and motivated me in ways that cannot be articulated. This to me embodies the best of the Dope.
Sir-T-Cups
I am indeed for real. But I am NOT amazing, anyone could do what I am doing, I just hope no one ever has to find that out. And if you have 2 girls in the room with you there must be something better to do than reading about me.
Malkavia
Maybe I should have said that I have a real tortuous relationship with organized religion. My dad was a Devout atheist. Mom was a once a month Presbyterian. Me, I went every week, more for the girls than the sermon.
Made a lot of life long friends there, met my wife. I just find that if you’re looking for someone who really practices small “c” chrisianity, Church is probably the last place to find it.
Attack from the Third Dimension
I have used that system before I could control my head movement. That system, though it works is really slow.
Olivesmarch4th
Hi neighbor. We’re in Toms River and my daughter teaches in New Egypt. Wondering if you know anything about entertainment venues in Trenton or Camden?
After reading this thread, and the symptoms of LIS I wonder what CAN you actually move?
Hi Blinkie
I’m very interested in this thread. I am a Registered Nurse, and my first job out of school was on a neurosurgery unit. We had various degrees of head and spinal injury patients from mild loss of fine motor skills to full paralysis.
Now, on the other side of the neurological spectrum, I work with advanced Alzheimer and related Dementias. Most of these people have very severe behavior problems that have required them to be admitted to a psychiatric hospital. (That is where I work) Sometimes we have discussions at work about what would be worse, to be mental intact in a non functional body, or the reverse.
Your posts have merely confirmed what I have always believed, that we are not our bodies, we are our minds, personality, and character. Possibly our soul. And yet, even in my very debilitated patients, there is something inside. They may have regressed, but they live. Ive seen music bring tears to the eyes of people who no longer even respond to voice or touch stimuli. I have a patient who is severely debilitated with Huntington’s Corea thank me (when she was considered non-verbal for years) for putting her chair by an open window to catch a spring breeze.
So I don’t really have a question, but know that someone on the other side of the medical equipment is reading this avidly.
Wait. I guess my question is, What should us nurses know or do to make your life better? (If you were in hospital) Also, how do you keep your skin in good condition and avoid pressure sores. I know that it must be a regular struggle to avoid breakdowns? (Sorry that its a mundane question, but I know its a reality in your life. Or your wife’s. Hi Mrs Blinkie! )
blinkie, I want to add my sincere thanks to you for sharing your life and experiences. You have done me a great service: my mom is in the late stages of Alzheimer’s Disease (as Mona Lisa Simpson points out, virtually the opposite of your condition), and you have reminded me to focus my thoughts on the person she was and in some ways still is. I haven’t seen her for a while - it’s lately become too painful - but I will go see her now with the compassion and love for her I felt previously, and remember too the bravery she has shown in coping with her illness.
So, I’ll echo the sentiments of others here, you’ve made us all better for having shared your story. Thanks, Dave.
Schuyler, not to hijack the thread but if you ever have questions or want to discuss your mom’s condition you can pm me or my email is in my profile.
Mona Lisa Simpson – maybe you could start another thread, “ask the nurse who works with dementia patients” (or similar). A lot of Dopers are currently dealing with loved ones who suffer from dementia, plus, of course, Doper Quasi is struggling with it himself.
Thanks twick, I’ve thought of doing that before but I was never sure if there would be enough interest. I will probably wait a while though, Im in a busy part of my schedule (well not today so much) and would rather do it when I have more time.
And yes, **Quasi **and I email from time to time. He has my complete admiration. Of course I work with much more advanced stages than his is at currently.
blinkie, I wish I could help with entertainment in Camden and Trenton, but I’m pretty new to the area (I grew up in Michigan.) I hear there’s a nice place in Camden I’ve been meaning to visit, Adventure Aquarium. If I ever manage to get away from my studies, I’ll let you know how it is.
Mona, please do that thread when you find the time. I recently started an internship involving elderly dementia patients and I’m not really sure where to begin.
SirT-Cup’s
The best description I can give you is that I am as paralyzed as Christopher Reeves was.
With the exception of being able to lift my middle finger slightly I have no movement below the neck.
Mona Lisa Simpson
Mrs. Blinkie sends kisses! Maybe my world has become too black and white. But in looking back at my experiences with nurses and doctors they really fell into 2 categories, those that got it and those who didn’t have a clue. Someone who “moves the chair into a spring breeze” definitely gets it. Just be you!
As for your mundane question, the only time I had any skin breakdown was when I was in hospital. It is a testament to the care I receive that I have never had any skin issues since I’ve been home. Additionally since I do have total sensation I know when I need pressure relief.
Olive’s March 4th
The aquarium is one of the place’s I was interested in. If you ever get there let me know how it is.
Ok, giving into peer pressure ask the Dementia Care Nurse is here.
Binkie, Im glad you don’t have skin issues. I had patient with MS who went very septic from a pressure ulcer (yes he was in Long Term Care) and we almost lost him. I consider pressure ulcers to be one of the BIG ENEMIES.
I have heard that long term care patients under the care of willing/supportive family are less likely to have pressure sores, and when they do those sores tend to be less severe.
My personal experience with this was my father-in-law and my mother. Neither were paralyzed, but both were extremely debilitated and confined to bed for some weeks prior to death. FIL never had any skin breakdown. Mom started to develop a sore on one ankle a few days prior to death as she stubbornly kept trying to get back into one favored position every time we moved her, but the skin was only starting to break down, it hadn’t progressed into a full open sore.
I have to say, I really admire Mrs. Blinkie as well - she’s taken on an enormous workload for Mr. Blinkie’s benefit and not every one would do that.