William Easton Riddell was a boy who lived in Scotland over 130 years ago. In 1882, he was 16 years old and playing soccer, when he hurt his leg. His parents took him to see doctors, but the leg would not heal.
The parents were told William had cancer. They did not tell William that until towards the end.
William knew he was terminal, and he did not become bitter, and did his best to keep his loved one's from feeling sorrow regarding his eventual death.
What seems naive, now in the 21st century, and hear it often with warrior culture, such as the samurai, or Spartans is the concept of looking forward to death and dying well. But this concept is exemplified with William. His mother wrote an account of these last months of his life. I'm pretty sure I do not have the same strength as this young man did to face what he faced with the attitude he faced it with.
His story is chronicled in a book, published in 1886, titled, "A Bright Sunset: The Last Days of a Young Scottish Football Player." I found the book to be touching and a tear-jerker.
Saturday, August 31, 2013
Thursday, August 29, 2013
Inspirational Person #6: Devon Melton
Devon is not recovering from spinal cord injury, but his Mom was recently diagnosed with breast cancer and is deciding on a treatment. Devon wanted to do something for her.
I saw this on Huffington Post and am inspired by the selflessness of this young man.
Devon Melton garage sale
I saw this on Huffington Post and am inspired by the selflessness of this young man.
Devon Melton garage sale
Wednesday, August 28, 2013
To follow up on yesterday's post. Here is a YouTube video with the focus on children who are afflicted with TM.
video
video
Tuesday, August 27, 2013
Transverse Myelitis Association
I copied and pasted their mission statement below from their website.
I did some more research on this condition, and it appears to be more rare than Guillain-Barre Syndrome. About 4 in a million get afflicted with this each year. Also, about 15 - 35 percent of transverse myelitis will eventually be diagnosed with MS.
Here is the link to the Transverse Myelitis Association
Here is there mission statement (copied from website)
I did some more research on this condition, and it appears to be more rare than Guillain-Barre Syndrome. About 4 in a million get afflicted with this each year. Also, about 15 - 35 percent of transverse myelitis will eventually be diagnosed with MS.
Here is the link to the Transverse Myelitis Association
Here is there mission statement (copied from website)
To support and advocate for individuals and their families diagnosed with rare neuroimmunologic disorders of the central nervous system
To promote awareness and to empower patients, families, clinicians and scientists through education programs and publications
To advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinicians-scientists dedicated to these rare diseases and by supporting basic and clinical research
OUR GOAL IS TO IMPROVE THE QUALITY OF LIFE OF INDIVIDUALS WITH THESE RARE NEUROIMMUNOLOGIC DISORDERS
Monday, August 26, 2013
Dreams are becoming normal
When I was in the hospital, I used to dream that I could run, and then I would wake up and know I couldn't even move my legs. Other times I would dream that I could run and think that my paralysis was only a dream, the woke up to realize it was real.
Around December, I has a vivid dream that I wasn't walking with a limp.
About a month ago, I would have dreams which I would be walking with a cane, and other dreams which I didn't need a cane.
Now, for the past week or so, when i dream, i do not walk with a cane, and walk like I normally walked before the spinal cord injury.
I take that as a sign that I will be able to alk 100% the way I did before the injury.
Around December, I has a vivid dream that I wasn't walking with a limp.
About a month ago, I would have dreams which I would be walking with a cane, and other dreams which I didn't need a cane.
Now, for the past week or so, when i dream, i do not walk with a cane, and walk like I normally walked before the spinal cord injury.
I take that as a sign that I will be able to alk 100% the way I did before the injury.
Sunday, August 25, 2013
Bed Wetting
Once I got the ability to stand up for a few seconds, I knew my legs would recover quicker than expected, but at the time, I still urinated through a catheter and still digital stimmed for bowel care. The bathroom issues worried me more than the walking. In October, I re-gained the ability to urinate naturally, but started experiencing the opposite problem, which has gradually gotten better, but the problem remains.
I often cannot hold it in when I get the urge, and it takes multiple trips to the bathroom to empty my bladder - just not as many trips now than back then. As for the bowels, I regained the ability back in November, but its pretty much stayed the same. I used to be very regular, but now I am regular enough, but would like to go more regularly.
My bladder control during the day is much better, and totally normal as long as i am less than 20 feet away from a bathroom at all times, and probably 80% normal if I am less than 5 minutes away from a bathroom. It's just at night, during sleep that I have problems. I really don't wet the bed, I wear two layers of absorbant accessories, one an absobant guard, and another, embarrassingly called diaper pants, but what it is is vynal underwear.
It's rather embarrassing to talk about these things, but it's something that those of us who have nerve damage go through. Hopefully, these functions will recover fully. In the meantime, there are adjustments that can be made - and thats the best we can do.
I'd much rather live with the adjustments than what I went through when these functions didn't work at all.
I often cannot hold it in when I get the urge, and it takes multiple trips to the bathroom to empty my bladder - just not as many trips now than back then. As for the bowels, I regained the ability back in November, but its pretty much stayed the same. I used to be very regular, but now I am regular enough, but would like to go more regularly.
My bladder control during the day is much better, and totally normal as long as i am less than 20 feet away from a bathroom at all times, and probably 80% normal if I am less than 5 minutes away from a bathroom. It's just at night, during sleep that I have problems. I really don't wet the bed, I wear two layers of absorbant accessories, one an absobant guard, and another, embarrassingly called diaper pants, but what it is is vynal underwear.
It's rather embarrassing to talk about these things, but it's something that those of us who have nerve damage go through. Hopefully, these functions will recover fully. In the meantime, there are adjustments that can be made - and thats the best we can do.
I'd much rather live with the adjustments than what I went through when these functions didn't work at all.
Saturday, August 24, 2013
Upper Body Exercises
For this recovery, my exercise regimen has focused on three areas: the upper body, the core (abs), and the legs.
Strengthening the leags and abdominal areas are pretty obvious to the recovery, but the upper body and arms don't seem as much.
There are two reasons for building up upper body strength during "walk recovery." The first is that wheelchairs are not easy to roll around in. The chair itself weighs, I don't know, about 10 - 15 pounds for a light-weight folding type, and then you are sitting in it - so it takes some amount of arm strength to roll the chair, and for long periods of time, and control it from going sideways - not going in reverse when going uphill, and controling the speed when going downhill. I managed in a wheelchair, but I never really became proficient.
The other reason for building upper body strength is that the stronger the upper body is, it can help out in balancing, and thus, put less pressure on the lower body - so the lower body doesn't have to do all the work. I believe that the stronger the upper body is, the faster one will be able to re-gain the walking function.
The hospital rehab gym had equipment that strengthened my arms, and my occupational therapist always guided me through the exercises, but at home, I have come to love the kettlebell. When I was in the wheelchair, I could barely lift a 10 lb kettlebell, and then when I started walking, I could do a 5 repitition set of one exercise, but now - though not as easy as before I fell ill - I can do pre-illness exercises of three different, with 3 ten set repititions of each, for a total of 90 repititions.
As with every other aspect of recovery, strength building takes time, but it all comes together, and one day, soon enough, you will have recovered.
Strengthening the leags and abdominal areas are pretty obvious to the recovery, but the upper body and arms don't seem as much.
There are two reasons for building up upper body strength during "walk recovery." The first is that wheelchairs are not easy to roll around in. The chair itself weighs, I don't know, about 10 - 15 pounds for a light-weight folding type, and then you are sitting in it - so it takes some amount of arm strength to roll the chair, and for long periods of time, and control it from going sideways - not going in reverse when going uphill, and controling the speed when going downhill. I managed in a wheelchair, but I never really became proficient.
The other reason for building upper body strength is that the stronger the upper body is, it can help out in balancing, and thus, put less pressure on the lower body - so the lower body doesn't have to do all the work. I believe that the stronger the upper body is, the faster one will be able to re-gain the walking function.
The hospital rehab gym had equipment that strengthened my arms, and my occupational therapist always guided me through the exercises, but at home, I have come to love the kettlebell. When I was in the wheelchair, I could barely lift a 10 lb kettlebell, and then when I started walking, I could do a 5 repitition set of one exercise, but now - though not as easy as before I fell ill - I can do pre-illness exercises of three different, with 3 ten set repititions of each, for a total of 90 repititions.
As with every other aspect of recovery, strength building takes time, but it all comes together, and one day, soon enough, you will have recovered.
Sunday, August 18, 2013
Afraid of Headaches
I can't forget how this whole event started - with the headache that didn't go away. It wasn't even a bad headache at first, just a dull constant one.
Now, whenever I get a headache, if it doesn't go away after the first four hours upon taking acetomenephin, I remember what it was like in the beginning. It is not a nice feeling.
I had a headache the other afternoon. By nightime, it still had not subsided. I took two more tablets and went to bed. Fortunately, when I woke up, the headache was gone.
Now, whenever I get a headache, if it doesn't go away after the first four hours upon taking acetomenephin, I remember what it was like in the beginning. It is not a nice feeling.
I had a headache the other afternoon. By nightime, it still had not subsided. I took two more tablets and went to bed. Fortunately, when I woke up, the headache was gone.
Saturday, August 17, 2013
Inspirational Person #6: Paulo Henrique Machado
Paulo Henrique Machado contracted polio as an infant, and has spent almost all of his life in a hospital, and hooked up to a respirator. But that doesn't stop him from making the most of life.
Paulo Henrique Machado on Huffington Post video
Thursday, August 15, 2013
Nutrition
Once out of the hospital, I tried hard to eat properly.
I did research on myelin sheaths, and since they are made up largely of fat, I tried to incorporate non-greasy fatty foods into my diet. I normally don't eat eggs, nor avocados, but each morning, I would eat one egg, over easy, or sunny side up, and avocados as much as I could.
I catheterized to urinate, so I cut out the coffee. I've always been a tea drinker, whether it is green tea or black tea, and continued that practice.
In the hopsital, a friend provided me with alkaline water, which I drank, but alkaline water caused me to "go," so although I drank it at home, I didn't as much as I was in the hospital. This is mostly because at the hospital, I catheterized every four hours, but after discharge, I tried to stay on a six-hour schedule.
Because of my bowel issues, I tried to take in a lot of fiber early on, and I still do try. I eat lots of beans, cabbage, other vegetables, fruits, hummus, salsa, and oatmeal (well, the oatmeal is not that often anymore). I was never much of a junk food eater, but I think I eat more nutritiously now than before I fell ill.
For a while, I took bvitamin B-12 tablets to help with the nerves, but I stopped now.
I think my nutritonal choices have helped me recover more quickly.
I did research on myelin sheaths, and since they are made up largely of fat, I tried to incorporate non-greasy fatty foods into my diet. I normally don't eat eggs, nor avocados, but each morning, I would eat one egg, over easy, or sunny side up, and avocados as much as I could.
I catheterized to urinate, so I cut out the coffee. I've always been a tea drinker, whether it is green tea or black tea, and continued that practice.
In the hopsital, a friend provided me with alkaline water, which I drank, but alkaline water caused me to "go," so although I drank it at home, I didn't as much as I was in the hospital. This is mostly because at the hospital, I catheterized every four hours, but after discharge, I tried to stay on a six-hour schedule.
Because of my bowel issues, I tried to take in a lot of fiber early on, and I still do try. I eat lots of beans, cabbage, other vegetables, fruits, hummus, salsa, and oatmeal (well, the oatmeal is not that often anymore). I was never much of a junk food eater, but I think I eat more nutritiously now than before I fell ill.
For a while, I took bvitamin B-12 tablets to help with the nerves, but I stopped now.
I think my nutritonal choices have helped me recover more quickly.
Monday, August 12, 2013
Pool Therapy
I don't know how to swim, but pool therapy was a reason for one of my most joyous moments during my recovery.
My legs and feet became strong enough a few weeks after leaving the hospital to have some sessions in the pool. I had already done a session with the parallel bars, and the therapist thought I'd benefit from the pool.
By this time, I could stand up for about 2 seconds without support on a hard surface, but the bouancy of the water made it easier for me to stand.
In order to get into the pool, I had to be transferred onto a bench. That was easy enough. The bench was lifted over the water. The pool was 4 feet deep. But the bench was above the water. And when I looked down, it seemed to be a deep drop. And not knowing how to swim - even though I knew I would not drown, I was scared out of my wits to jump into the water.
Once in the water, though, was hard work and pure joy. Joy because of what I was able to accomplish for the first time since falling ill - to stand and even walk without much trouble. I was able to stand for a long period of time, albeit holding onto the rails, but I was also able to let go of the rails for measurable lengths of times - say more than a few seconds.
What really made me happy was that using a rail that went across the width of the pool, I was able to walk the width of the pool and back. Then, in a later session, I was able to do this in the 3 feet part of the pool, where the surface was harder.
I had two sessions in the pool at the hospital, and haven't been in one since. But, these sessions really boosted my confidence.
My legs and feet became strong enough a few weeks after leaving the hospital to have some sessions in the pool. I had already done a session with the parallel bars, and the therapist thought I'd benefit from the pool.
By this time, I could stand up for about 2 seconds without support on a hard surface, but the bouancy of the water made it easier for me to stand.
In order to get into the pool, I had to be transferred onto a bench. That was easy enough. The bench was lifted over the water. The pool was 4 feet deep. But the bench was above the water. And when I looked down, it seemed to be a deep drop. And not knowing how to swim - even though I knew I would not drown, I was scared out of my wits to jump into the water.
Once in the water, though, was hard work and pure joy. Joy because of what I was able to accomplish for the first time since falling ill - to stand and even walk without much trouble. I was able to stand for a long period of time, albeit holding onto the rails, but I was also able to let go of the rails for measurable lengths of times - say more than a few seconds.
What really made me happy was that using a rail that went across the width of the pool, I was able to walk the width of the pool and back. Then, in a later session, I was able to do this in the 3 feet part of the pool, where the surface was harder.
I had two sessions in the pool at the hospital, and haven't been in one since. But, these sessions really boosted my confidence.
Sunday, August 11, 2013
Inspirational person #5: Katelyn Anderson
Right after I posted about Doug Smith, I found this story, and couldn't wait a week.
Katelyn Anderson has cerebral palsy and when she was two months old, she suffered brain damage to cardiac arrest. Her mother was told that Katelyn would spend the rest of her life in a vegetative state.
The report said progress was slow, but guess what? She is walking and talking.
But she has a new obstacle. She loves chickens, and walks 100 yards each day to be with them and collect their eggs. The chickens have served as a form of therapy for her and her brother, Lucas, who also has medical conditions. But the city wants to ban the chickens. A petition is being passed around which asks the city council to reconsider the ban.
Here is her story on AOL
City wants to ban chickens
Here is the link to the online petition: If it doesn't load properly, try re-loading the tab.
Petition to reconsider chicken ban
Katelyn Anderson has cerebral palsy and when she was two months old, she suffered brain damage to cardiac arrest. Her mother was told that Katelyn would spend the rest of her life in a vegetative state.
The report said progress was slow, but guess what? She is walking and talking.
But she has a new obstacle. She loves chickens, and walks 100 yards each day to be with them and collect their eggs. The chickens have served as a form of therapy for her and her brother, Lucas, who also has medical conditions. But the city wants to ban the chickens. A petition is being passed around which asks the city council to reconsider the ban.
Here is her story on AOL
City wants to ban chickens
Here is the link to the online petition: If it doesn't load properly, try re-loading the tab.
Petition to reconsider chicken ban
Saturday, August 10, 2013
Inspirational Person #4: Doug Smith
It seems, at this stage, most of my inspirational people are athletes. I don't think athletes have a near monopoly on being inspirational when it comes to spinal cord injury recovery, but I think they are more willing to share their stories of recovery.
That said, here's another one: Doug Smith, who was drafted by and played for (among other teams) my hometown Los Angels Kings, PG (Pre-Gretzky). Smith played nine years in the NHL, then signed with a team in Austria. He broke his neck during a game and shattered two vertebrae, which left him at risk for spinal cord injury. However, it was the surgery that damaged his spinal cord and left him a quadrapeligic.
It started with a spasm in his big toe - and four months later, he was able to walk.
Today, he is a motivational speaker, and truly has an inspirational story to tell.
That said, here's another one: Doug Smith, who was drafted by and played for (among other teams) my hometown Los Angels Kings, PG (Pre-Gretzky). Smith played nine years in the NHL, then signed with a team in Austria. He broke his neck during a game and shattered two vertebrae, which left him at risk for spinal cord injury. However, it was the surgery that damaged his spinal cord and left him a quadrapeligic.
It started with a spasm in his big toe - and four months later, he was able to walk.
Today, he is a motivational speaker, and truly has an inspirational story to tell.
Friday, August 9, 2013
Feeling Jay and Carrying a Cane
In George M. Cohan's song, "45 Minutes From Broadway," he writes about it being a "jay atmosphere." I didn't know the meaning of "jay," until I researched the origin of the term, "jaywalking." "Jay," means countryside, and "jaywalking" would be how one walks in the countryside - crossing the street in the middle of a road.
Mostly because I can't, but I don't "rush" anymore when I walk, and I feel that even when after I have no need to use a cane, I will still carry one. Carrying a cane is a hassle. Just to carry it is, and then even more of a hassle when I need to set it someplace. However, many times when I walk with a cane, I do so leisurely, and I don't even attempt to rush. The effect is that my mind set changes sometimes - I relax, thus, I feel "jay," when I walk with the cane.
I don't know how it'll be when I'm fully recovered, but for now, I'll take time to smell the roses when I go out for my walks.
Mostly because I can't, but I don't "rush" anymore when I walk, and I feel that even when after I have no need to use a cane, I will still carry one. Carrying a cane is a hassle. Just to carry it is, and then even more of a hassle when I need to set it someplace. However, many times when I walk with a cane, I do so leisurely, and I don't even attempt to rush. The effect is that my mind set changes sometimes - I relax, thus, I feel "jay," when I walk with the cane.
I don't know how it'll be when I'm fully recovered, but for now, I'll take time to smell the roses when I go out for my walks.
Monday, August 5, 2013
Transverse Myelitis
Transverse Myelitis is the second diagnosis I received from the doctors. This is a neurological condition caused by inflammation of the spinal cord. Whether my body did this to itself, or if it was a virus, will probably never be answered.
In an earlier post, i questioned whether the Herpes-Zoster (the virus that causes chicken pox and shingles) flared up in me again because of my extreme skin sensitivity. As I research this condition, I just found out transverse myelitis does develop following a herpes-zoster infection. I am now wondering if the menigitis weakened my immune system enough for the herpes-zoster virus to manifest itself and cause the damage to my spinal cord.
TM is also associated with loss of leg movement, loss of blader and bowel control, and sensitivity to heat, cold or touch - all of which I experienced. I mean, it was 90 degrees outdoors, and during my "lunch break" between therapy sessions, i'd go outside with a windbreaker, and be comfortable temperature-wise.
The prognosis is actually worse for TM than Guillain-Barre syndrome (GBS) - for only 1/3 of patients recover "good or better," 1/3 recover fairly, and 1/3 show no improvement. Whereas, with GBS, most people are able to recover "well enough." The time length for recovery seem to be the same as GBS, that is it will take two years.
Another thing to keep in mind, I was reading that in about 2% of the cases, another "attack" is possible, and among those with multiple attacks, the first time, which could have been years previous, was a first sign of multiple sclerosis.
In an earlier post, i questioned whether the Herpes-Zoster (the virus that causes chicken pox and shingles) flared up in me again because of my extreme skin sensitivity. As I research this condition, I just found out transverse myelitis does develop following a herpes-zoster infection. I am now wondering if the menigitis weakened my immune system enough for the herpes-zoster virus to manifest itself and cause the damage to my spinal cord.
TM is also associated with loss of leg movement, loss of blader and bowel control, and sensitivity to heat, cold or touch - all of which I experienced. I mean, it was 90 degrees outdoors, and during my "lunch break" between therapy sessions, i'd go outside with a windbreaker, and be comfortable temperature-wise.
The prognosis is actually worse for TM than Guillain-Barre syndrome (GBS) - for only 1/3 of patients recover "good or better," 1/3 recover fairly, and 1/3 show no improvement. Whereas, with GBS, most people are able to recover "well enough." The time length for recovery seem to be the same as GBS, that is it will take two years.
Another thing to keep in mind, I was reading that in about 2% of the cases, another "attack" is possible, and among those with multiple attacks, the first time, which could have been years previous, was a first sign of multiple sclerosis.
Sunday, August 4, 2013
Inspirational Person #4: Rowdy Gaines
Rowdy gaines is currently a commentator for competitive swimming, but he is a former Olympic swimmer. He has won 3 Olympic Gold medals. In 1991, he came down with GBS, and spent two months in the hospital.
From what I have read, he fully recovered, not 80%, not 90%, but fully. And I believe it, for less than 5 years later, he qualified for the 1996 Olympics in Atlanta.
The inspiration here is not that Gaines recovered, for most people with GBS do recover, and its not that he even "fully" recovered - but that he recovered, and I say this because back in the 90's, athletes still lost some of their athleticism after age 30 - and for Gaines to qualify in what was at the time, and still largely is a young man's sport after GBS and at the age of 35 - in a way, he was even more fit than before - that is what is inspirational.
From what I have read, he fully recovered, not 80%, not 90%, but fully. And I believe it, for less than 5 years later, he qualified for the 1996 Olympics in Atlanta.
The inspiration here is not that Gaines recovered, for most people with GBS do recover, and its not that he even "fully" recovered - but that he recovered, and I say this because back in the 90's, athletes still lost some of their athleticism after age 30 - and for Gaines to qualify in what was at the time, and still largely is a young man's sport after GBS and at the age of 35 - in a way, he was even more fit than before - that is what is inspirational.
Friday, August 2, 2013
Tracking Progress
Sometimes tracking progress can be measured. Sometimes, I rely on feelings. Generally, day to day progress - as I go deeper into recovery is hard to measure. I just feel lighter on my feet, or my legs just feel stronger -but no measurable change.
Week to week, or month to month, many times I can measure differences in achievements - I can walk farther without having to sit, or walk farther before my bladder starts acting up - or I can walk farther without a cane.
When I can't see the progress week to week as clearly as I would like, sometimes I get frustrated, but the important thing to know is that I'm improving daily, and even though I might not see it day to day, I keep telling myself I will see the improvement if I just check again in a week.
Moral of the story: don't get discouraged because you don't actually see results every day.
Week to week, or month to month, many times I can measure differences in achievements - I can walk farther without having to sit, or walk farther before my bladder starts acting up - or I can walk farther without a cane.
When I can't see the progress week to week as clearly as I would like, sometimes I get frustrated, but the important thing to know is that I'm improving daily, and even though I might not see it day to day, I keep telling myself I will see the improvement if I just check again in a week.
Moral of the story: don't get discouraged because you don't actually see results every day.
Thursday, August 1, 2013
Long Beach Memorial Annual WiiHab Championship
Each year, Long Beach Memorial Hospital hosts an event called "WiiHab" in which rehabilitation patients, staff and doctors compete in Wii games to raise money for the rehabilation services.
It is also a fun way for rehabilitation patients to improve rather than the standard exercises we normally do.
I was invited to compete this year, but I declined.
As a footnote, the team I would have been assigned to won. Maybe I should have participated. But then again, if I did, maybe the team would have lost.
All in all,it is a great program.
It is also a fun way for rehabilitation patients to improve rather than the standard exercises we normally do.
I was invited to compete this year, but I declined.
As a footnote, the team I would have been assigned to won. Maybe I should have participated. But then again, if I did, maybe the team would have lost.
All in all,it is a great program.
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