Dr Young,

I responded to your questions about my situation when I asked you about Corey. I feel like I have elctrical storms & bolts of lightening
shooting through my body, which as exacerbated by e-stim on quads and hamstrings for a few days afterwards.

Can you please offer some feedback?



posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.


response 2/26/05

posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.
posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.
posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.
posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.
posted 02-17-05 06:33 PM
Simba,

Carey was a good friend and some people may remember him. He choreographed the Spinal Series (the first, I believe, dance series that was choregraphed for people with spinal cord injury). He had what might be called a "central cord syndrome" in the sense that his arms were initially worse than his legs. At the beginning he had almost no movement of his arms and some sensation in his legs. Over time, he regained a lot and this was in the 1980's when there wasn't treadmill training or stuff like that, and also when pessimism was deep and dank concerning the possibility of recovery. He received his injury from diving headfirst into a pool.

I wish that I could predict who would recovery and who wouldn't after spinal cord injury. This is something that I gave up a long time ago. The fact that you have 100% sensory input is really important because it says that you have many axons crossing your injury site. While most of the sensory axons pass through the dorsal part of the spinal cord, almost all of the spinothalamic tract is in the lateral column where the corticospinal tract also passes.

You are actually very rare, a person with almost complete sensory preservation but motor loss. In the 25 years or so that I have in this field, I have probably met only 4-5 people like you and I probably have met thousands of people with spinal cord injury. I think that this is because most people with your condition eventually go on to recover some motor function.

What are you doing for exercise and trying to move your arms and legs. When you say that you are C7-8, does this mean that you have wrist and finger flexion? By the way, in rehabilitation terms, the term C8 means that C8 is your lowest normal segment. If that is the case, this means that you should be able to use your hands.

How is your posture? Can you move your legs? Have you ever tried treadmill training? Do you go swimming and can you stand in a pool? Have you considered joining some of the walking and exercise programs that are available. Have you made a concerted and systematic attempt to walk?

Wise.

posted 02-18-05 04:13 PM
Thank you so much for your prompt reply. The sensory imput I have is to light and deep touch all over my body (including my little toes) I was tested in OT for light touch and scored 100% I have some sharp/dull stick/prick sensation but more on my upper body and abdominal areas. i cannot differentiate temperature of water on my lower body, but I can feel the sensation of the water. I do have significant sphincter and genital sensation and can sometimes evacuate bowel production on my own. We have an every other day program that is only digital stim...I do not use laxatives, stool softeners or suppositories.

I would say I have about 85-90% use of my hands/fingers. I type with my fingers and practice hard every day. I have complete wrist and finger flexion and my grip is improving. I can eat, grip a hair/toothbrush and hold a hair dryer with no assistance. I can straighten & curl both hands into fists but my pinch grip is weak (but has improved)

I have just restarted PT/OT at Wake Med in Ral NC. I have excessive tone and central pain which inhibits my function in terms of transfers etc. I am working with a fantastic pain doc Alan Spanos(you can google him) to find a right combination of meds to avoid the pump. The last 2 times at PT I was in a standing frame (1st time in 14 mons) and I did great and it helped my spasms/pain. We are getting a script for my own standing frame. This last time I had a pressure wound on the bottom of my foot (which is being agressively) treated so we did e-stim on my quads and hamstrings. I had excellent results with that and hope to get an e-stim machine for use at home too.

For my upper body I do the BTI exercises at Wake but also work triceps,biceps lateral amd front arm lifts with 3 & 5lb hand weights. We also hve 3#, 7# & 9# medicine balls that I use to work my shoulders/chest et.

My posture is not great but i am working on my core stregnth. Because of my extreme tone and no motor function in my legs I have not been offered the opportunity to do treadmill training, or any pool therapy. I have not made any effort to walk (have been lead to believe I cannot) but would try anything that was offered. I do hope to do some e-stim cycling. Because of my spasms I have no atrophy and lots of muscle mass in my legs.

Hopefully I have explained my circumstances a little better and it can help with your feedback.

Thanks,

Simba