A Prisoner in Your Own Body
Stephen Hawking, a physicist with ALS, Photo Source
by Evelyn
Imagine if you had an itch…but you couldn’t scratch it. Or if your best friend was hurting… but you couldn’t hug them. Are you paralyzed? No, but very close. Most likely you have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease. ALS is a rapid and fatal neurological disease that attacks your neurons responsible for voluntary control. It is like paralysis, except you can feel pain or pressure on your body. It is categorized as a motor neuron disease because it causes both your upper motor neurons (in the brain) and lower motor neurons (in the spinal cord) to degenerate and die. Patients diagnosed eventually cannot breathe without ventilatory support, and most die within 3-5 years. Only 10 percent even live past 10 years. The worst part of this disease is people don’t lose the ability to think or feel. Their intelligence is normal; they just can’t express it by talking. Source
It is very hard to diagnose or notice it coming on because initial symptoms are so subtle. They may include twitching, cramping, or stiffness of muscles, muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. Problems with walking straight, stumbling, speech, or doing simple hand tasks may also occur. Limbs begin to thin and weight is lost when the muscle atrophies, or withers away and dies. You can only be diagnosed if you have signs of both upper and lower neuron failure that cannot be attributed to another cause. There is no true cure to halt ALS. Source
A good friend of our family is diagnosed with ALS. His name is David Jayne, and by the grace of God he has been living with it for 20 years, an EXTREMELY RARE phenomenon. My mom can remember when he could walk and talk with her, and even coax her to ride roller coasters with him. Those days are long over, and they will never come back. David Jayne now must eat either through a feeding tube or a syringe in his stomach. He uses a communication device that is controlled by his eyes (by electrodes implanted in his brain), one of the few parts that still work. It takes a while to type a simple sentence like “Hello, how are you?” But he hasn’t let this disease stop him from staying in his children’s lives and having one of his own. He still keeps in touch with us and other friends by e-mail, and even though it takes over an hour to get out of bed and dressed, he still pushes on every day. Right now he is in the midst of writing a book about his experiences with ALS and the NUMEROUS trials he has had to face.
Check out this article about him!!
Don’t take life as you know it for granted!! Live it now, because you never know when a big hunk of it will just be taken away…just like that.
How do you think it would feel to have no control over any part of your physical body and have to depend on someone else to take care of every basic need?
What do you think it would be like for your mind to be working perfectly but you couldn’t express your thoughts by talking or hand gestures?
What would you do if you had to depend on machines to keep you alive?
May 17th, 2008 at 6:30 pm
Cool post Evelyn! That is so awsome that David has been living with ALS for 20 years!! To anwser your questions, I think it would be not so great to not be able to do anything by yourself. I mean maybe for a few days it wouldn’t be that bad, but after that I would get sick of it. I would also feel really bad for who ever was helping me too. I’m sure they might get sick of it after a few days too. I think it would be really frustraiting if I couldn’t say anything or use hand gestures. It would make me go insane if people couldn’t understand what I was trying to say. I don’t know what I’d do if I depended on machines to keep me alive. I guess I would kinda give up hope. Looking at my anwsers to all of the questions, it kinda gives me an idea of how I take for granted talking, walking, and even being able to do things myself.
May 17th, 2008 at 8:08 pm
This post applies directly to me. My Aunt had this, and lived for about 3 years after the diagnosis. I remember seeing her, and wondering how it must feel. I can not imaginge having full brain function but not being able to do anything with it. She could not move at all, and it was extremely painful for her to move when others helped her. I remember we had to feed her through tubes, and IV’s. I just can’t imagine having to depend on machines to keep you alive. This is a terrible thing, but we just have to make the best of life, and live it to the fullest!
May 17th, 2008 at 9:40 pm
Gosh Evelyn, that’s a really touching post. I have to say, I really can’t imagine how anyone could live like that. More than anything to me, to be alive with this disease would be the ultimate form of torture. To not be able to express your thoughts and feelings, or to survive on your own would be a life that only those who love life the most could stand to thrive. It just overwhelming to think that a few random cramps or a twitch could be the sign that your nerves are dying, and that soon you won’t be able to do all that were before. I’m not sure I could do that. The thought is just completely over my hy head. It is in human nature, like all other animals to compete and survive. However, unlike other animals, humans must sometimes depend upon one another for survival. Quite literally in this case- no other species on the planet could have the means to help one of its members with this condition survive. However, I completely agree with Roger- we all only have one shot at life and you never know what could happen in the blink of an eye. We all need to live life to its fullest extent!
May 17th, 2008 at 10:14 pm
Wow. That post definatly makes you step back and be in awe. That is amazing that David is still going strong. It really makes you think about what you take for granted. I think that if I had this I would be so ready just to look down at my leg or something and be like “MOVE!”. But to think I could not even wave my hand to say hi to someone. If you think about it right now and imagine how it would feel, it is almost like an out of body experience. I think that if I could not express my feelings I would definatly give up hope. I know that I am very talkative and to go from talkative to mute I would not be able to do it. To answer the last question, if I had to depend on machines to keep me alive I don’t know what I would do. I almost would not want to be on machines, just because I don’t want to live that way. I would want to live life to the fullest and if that is the fullest I am going to get then I would not want to live it that way. Great post Evelyn and sorry to hear about your aunt Roger.
May 17th, 2008 at 10:28 pm
wow, its so crazy that a man with so much intelligence is trapped and limited in what he can do. Its so amazing though that even when there are things in his way he can still share his knowledge with the World and make an impact. It truly shows that God will find a way for you to fulfill your purpose no matter what obstacles you are presented with. I have been meaning to rent the movie, The Diving Bell and the Butterfly, because it instantly came to mind when I read this post. It is about a man who became paralyzed in a car crash and can only communicate by blinking his left eye which is the only part of his body that wasn’t paralyzed. It looked to be a very interesting movie, and I would encourage those reading to rent it. Good post Evelyn!
May 17th, 2008 at 10:56 pm
Wow, this really makes me think about how lucky I am to be able to walk and talk with no problems. I think we all take life for granted every day, and we don’t appreciate what we have until its gone. I can’t even imagine waking up one day and not being able to get out of bed myself or go through a normal daily routine. I admire Stephen Hawking because he has acheived great things in his life, despite the obstacles he has to overcome every day. If my life was dependant on machines, I would feel sort of worthless, like I couldn’t do anything and people had to do things for me. It would be really hard to want to be able to express my thoughts, but not being able to, especially with your full intelligence intact. I can’t imagine what it’s like to not be able to do simple things such as lift your arm or turn your head.
We all think life is guaranteed, but we don’t realize that any minute of any day, it can be taken from us entirely. This is why I believe we should make the most of every day, treat people with respect, and always try our best to make a positive impact on the world. Great job Evelyn!
May 17th, 2008 at 11:15 pm
Good job Evelyn! This post was interesting. I had heard a lot about Lou Gehrig’s disease, but had never really knonwn much about it. It’s sad that one of your family friends has been affected by this disease, but it’s great to hear that he pushes on each day. I think that having this disease would make it hard to get out of bed if it takes an hour to do so. It’s amazing that your friend has lived for 20 years with this disease! I agree with Roger that I would get sick of the disease after having it for a while.
This is a kid’s website, but I think it puts ALS in simple terms that are easy to understand. http://www.kidshealth.org/kid/grownup/conditions/als.html
Good luck to David Jayne!
May 18th, 2008 at 11:52 am
Wow even though this is a really sad disease, this post was quite interesting. Personally if I had this disease I would get really annoyed not being able to use my hands and have no control over my body. I would not like other people having to help me with simple tasks like drinking a glass of water, putting my clothes on in the morning, or even taking a shower. Those things come so second nature to us that we don’t even think that there are people in this world that can’t even perform those simple tasks on a day to day basis. I agree with Rachel, looking back at this comment I do realize how much we take life for granted and we don’t realize how blessed we really are to simply get out of bed each day. To answer the other question, if I had to rely on machines to simply communicate I would go crazy. Not being able to talk would be extremely annoying and inconvenient for that matter. This post got me thinking.. Good job Evelyn : )
May 18th, 2008 at 12:16 pm
My dad’s best friend, Don, has Lou Gehrig’s disease. He was diagnosed with it 2 years ago, and his speech is really slurred. When he was diagnosed, he was told he had 2-4 years to live. So far, the disease hasn’t progressed very fast, but you never know when it may speed up. He’s taking lithium because its supposed to slow the progression of the disease. Right now, he still has control over most of his body, and he doesnt depend on anyone for his basic needs, but that could change really fast. He tries to live every day to the fullest and spend as much time as he can with his 7 year old son. I can’t imagine what it must be like to know that you only have so much time left to be able to play outside with your child.
May 18th, 2008 at 2:39 pm
This is an incredible person and a great post. It is so sad when things like this occur, because most of the time you do nothing to deserve it. It is by some other power that science cannot explain that this man is still alive. He must have some true heart of a warrior to be able to keep fighting and holding on to every last minute. Like Maryclaire said it would be incredibly annoying to have total brain capacity and no body control. I would probably give up and go into some sort of depression. That is probably what most people would do. That is why this man has the heart and the mindset of a warrior and a champion. If i had to depend on machines to live and do not know that i could do it. I only have so much trust in technology to be able to put my life in it. It is great the advances they are making but how good is it really?
May 18th, 2008 at 6:20 pm
Wow just reading this makes me feel unaware of important things and makes me feel greatful for even being able to hug someone when there in pain.
Why is it so hard to diagnose though that is what puzzels me usually people know something is wrong when you lose and excessive amount of weight or even walking straight or muscle tension. Yes they might be associated with other diseases but it should be noticed and tried to at lease be cured before the whole thing affects your whole body.
To have no control over my body I feel so dependent on others to do things for me like the basic things walk me fix me something to eat which I do those simple things on my own and much more. This is really heart wrenching. And to not be able to express my thoughts because I am blunt and like to help people would be hard for me when I am the most loquaciouis person anyone has ever met. And I speak my mind that would be hard for not only me but alot of people. I think that its like the opposite of being brain dead your body dead but your brain is working. If I had machines I was hooked up to me to help me survive I truly would not know what to do.
Wow Evelyn I have to say this is an amazing post and you made me aware of something that is devestating to people.
May 18th, 2008 at 6:44 pm
This is a really cool post Evelyn! I never knew that ALS was Lou Gehrig’s disease. Stephen Hawking is a very respectable man in the first place, but to deal with ALS AND do what he does takes a special type of man. My neighbor was diagnosed with ALS also 6 months ago. He slurs his speech and does not have a lot of body control. He and his wife were artist, I know it must be very hard for him to not be able to paint or do anything artistic. I would get tired of not having body control, but having the brain power. Its almost like being strapped down to a table or chair and being able to move, but not being able to move. I am very active and love playing sports. It would be devastating to me not being able to move. The worst part is knowing that you cannot do anything to get rid of it and your going to die of it sooner or later. I would not like having machines keep me alive. I would hate to have so many cords and IVs hooked up to my body, but if it was necessary to keep me alive I would do it.
September 10th, 2008 at 9:42 am
I can hardly imagine what it would be like to have that disease. It just sounds so hard to live with, if you can even call it living. If I had it, I don’t think I would be able to handle it. Depending on someone for basic things like eating and getting dressed would be hard not only on myself but everyone around me. Since my mind would be working perfectly but not much else, I would have to find sad ways to entertain myself, like watching TV and thinking for hours. Expressing my thoughts would be extraordinarily hard, and I would probably be constantly frustrated trying to communicate and eventually just give up. I can’t stand needles at all, and so having IVs hooked up to me would freak me out. Having to depend on machines would be worse, because I need to do things for myself. I really wish we could find a cure for this horrible disease!
September 11th, 2008 at 5:10 pm
My uncle has something like ALS, but it’s not what Stephen Hawking has. He was in a football accident when he was in college and half of his brain was so damaged, that it’s practically dead. He can’t walk or talk and he can barely move except for his feet and squeeze his hands (which is how he talks). He has many muscle spasms and he can definitely feel pain and pressure. Since he can’t walk, he is in a wheelchair, and since he can’t talk, he uses an alphabetical system that his nurses and our family have all learned and have it memorized by now. It takes him a while to spell out just one word and about 10 minutes to spell out a question or a sentence. He has to take his medicine through tubes that go straight to his stomach and is fed food that is all mashed up so all he has to do is swallow since he can barely chew. He has been this way for over 20 years and he lives in a nursing home about 10 minutes away from my grandfather who recently suffered a stroke in West Virginia. We visit them often so my dad can check in on his father and brother and make sure they’re okay. Even though my uncle is very physically incapable of doing practically anything, I’m sure he we be able to live a pretty long life.
September 11th, 2008 at 6:44 pm
Right now, I don’t think I could ever relate to what Stephen Hawking is going through or any of the 30,000 Americans who have ALS. Loosing all control of my body would be devastating. I would feel so guilty having to rely on someone else to take care of me. It would make me feel so selfish because they are taking the time and care to make sure I was alright. I might even go crazy not being able to express my feeling. Not being able to thank the person who is taking care of me or tell them how horrible I feel and how sorry I am. I would hate having all the machines and tubes hooked up to me. I would feel defeated like there was nothing else I could do because without them I would die. Without a cure more and more people will develop this disease. Hopefully one day soon thy will discover one and no one will ever have it again! (http://www.alsa.org/)
September 11th, 2008 at 6:44 pm
I think to have a fully functioning brain but no control over your body would be absolutly awful. What would bug me even more than the inability to move would be the pity that you would get from other people. But as someone looking on from the side lines, unable to do anything, you cant help but to pity them. The whole disease seems to cause a loose loose situation.
It would also be extremely stressful to have a full range of thoughts and emotions but not being able to express them at all. The deteriorating process would also be very difficult, because you would remember what it was like to use hand jestures in a conversation and feed yourself. Your also completley helpless to stop this process, all you can do is enjoy the day your in because once diagnosed with the disese the time that you thought you had left to live is drasticly shortened.
September 11th, 2008 at 7:57 pm
If you are into different types of mystery where even some of the top doctors cant confirm exactly whats wrong with a person you should check out the discovery health channel for Mystery Diagnosis which shows a variety of different types the most uncommon diseases you can aslo visit http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x
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