Socket Salad Surgery

The socket doc is in

Here is the result of my own socket adjustment; this is the part that fits inside the carbon fiber shell. I removed some of the blue material over the tibial tuberosity (tt) that is meant to cushion the areas that receive more loading. Using my old Dremel Moto-Tool I took down some of the plastic as well. 

The area of indentation between the tt and the top of the socket is what is causing the friction and pressure that is leading to swelling. My leg changes shape but the socket is static and does not, causing the difficult fit problem. There are some new socket designs that may help in the future, especially for more active prosthetic users. Here is a link to a PDF from Biodesigns.

I will try my adjusted socket out in an hour or two, but it will take some time to see if it helps since I already have swelling. Tomorrow's long run should be doable, but any skin breaches have to be avoided. Larry and I will look at changes on Monday, and hopefully this issue will be behind me in a few days. 

No one said this would be easy. The running part that is.

Tibial Tuberosity Tweaking

Swelling at the tibial tuberosity

Here is a problem I've been having with my running prosthesis: that little swollen bump below the kneecap is called the tibial tuberosity. Being on the lean (or skinny in my youth) side this has always protruded a bit more on my legs. However, this swelling has been going on for a couple of weeks and I am concerned the skin will get irritated and raw if this continues.

I think I have figured out why this is a problem in my socket. When I am cast my leg is extended and the tibial tuberosity is not apparent; but when I bend my knee it protrudes quite noticeably. The residual volume changes are to blame, my left knee/tibia does not appear as bony but I can feel it under my skin.

So I am off to see Larry on Monday to have this looked at as well as a resoling of Jato. I've already had one significant adjustment with part of the socket cut lower below my knee. I had to give this some time to see if it would work since my leg was already swollen and it appears a more aggressive change will have to be made next time.

Although the swelling is pronounced, it is more in the uncomfortable category instead of the painful one back when I ran Boulder Bolder. With my mileage increasing and approaching the maximum I will do for this round of training, it will be good to get this fit issue corrected before I start my marathon plan.

 Rainbow Row (Photo: Charleston Marathon)

I am running nearly 50 miles a week - and already over 1000 miles for the year - and my leg may will need some time to adopt to the new stress. This is the main reason I will not run more than 60 miles a week in training for the Charleston Marathon, as I think more mileage than that for my first ampathon will increase the injury risk without substantially adding to the performance gain.

Thankfully I don't have any skin compromises going on like a blister or raw spot. The Aquaphor is preventing that so far but the swelling must be eliminated. It's also 2 weeks before my first half marathon as an amputee runner, so this house needs to be put in order.

Up this weekend: 16 or maybe 17 miles if I - and the tibial tuberosity - are up to it. Time to make the donuts, uh, ice!

Cooper River Bridge Run - Mobility Impaired Team is Official!

February 8, 2011 Update: The Mobility Impaired Team is NOT the same as a separate division as the one wheelchair athletes enjoy. Any group can have a team, but disabled athletes, unless they are in wheelchairs, do not have a division. I had hoped a division would be established but this has not occurred and I really do not understand why.

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This morning I learned that the Cooper River Bridge Run has established an official team for all Mobility Impaired athletes! This is similar to a separate division in that it is a CRBR specific team, which is accessed after you sign the disclaimer form when you register:

This is great news and I hope all my gimp friends will try to take advantage of this terrific opportunity to shine a light on your amazing achievements. Floyd Brace and my CP Larry Wiley were instrumental in helping establish this event for 2011, having met with the race director Julian Smith and myself to discuss the division/team.

  Photo: Cooper River Bridge Run (2008)

Please come and enjoy one of America's most beautiful cities, fabulous restaurants, and a superb race! Thanks to the Cooper River Bridge Run for being the latest addition in helping mobility impaired athletes join in a celebration of life and fitness.

Questions easy. Answers hard.

With the summer blast furnace just past it's maximum output, it is very difficult to make any real training gains. The body is put under great stress from the heat and it becomes difficult to maintain the level of fitness from the spring. However, it is conducive to slower running with the necessary grunt work that entails base training, with just enough speedwork so the legs don't forget the race parties they will be attending in the cooler weather.

This past week was planned to be a little lower mileage, but I did a couple of faster sessions tuned to the heat. On Tuesday I did my imitation of a Zatopek workout: 16 x 400m at a slower pace. The purpose of this workout is, as part of my base training, to build endurance while not overdoing it. My second workout was a 4 mile tempo run. A thunder/lightning storm forced me to do this on the treadmill; I much prefer to do this run on the roads. Tempo runs offer a race-like experience without as much distress as a race, instilling confidence as well as a great fitness benefit.

 Melted asphalt coming off my shoe outsoles on the treadmill

On other days I ran easy, and on Saturday I had 10 miles planned with 8 at MP (marathon pace). Earlier in the afternoon I checked the weather and the heat index was about 96oF. I knew the run would be tough but not impossible, especially since I have run further albeit at a slower pace. What I did not know until after the run was the forecast was revised and that 96o would be in excess of 100o. This would prove too much for me in my current condition.

After a 2 mile warm-up on the treadmill, I headed out with my CamelBak Siren filled for the trip with trusty Gatorade. It actually took some concentration to slow down the first mile, which I still ran a little fast. Shortly after starting mile 2 I began wheezing some and admonished myself to hit the damn planned pace even if I have to walk to slow it down.

As the run progressed it took more effort to maintain pace and I finally compromised with doing 5 miles at MP and running the last 3 easy. When I checked my Garmin 301 when I was finished, I found my HR (heart rate) was the same at my first fast mile as my last easy miles. My body had overheated and just could not perform as I had expected. At 57 years of age, at least I can still recognize a need to learn.

Questions easy. Answers hard.

In three weeks I do my first half marathon - the Francis Marion Dirt Dash - as an amputee runner. I easily could have done the distance months ago, but it is my desire to do it well, not just finish. It will not be close to my best times at an able-bodied athlete, but it will be an honest effort. That is how I try to live this life.

My friend Kelly Luckett, who I met at the Getting2Tri National Paratriathlon Camp, and her friend Holly will be doing the half marathon and my wife Jennifer will be doing the 5k. I am hoping the oppressive heat will lift some, as it is doubtful much if any breeze will be felt in the forest. I will do my best NOT to start the race too fast; since I have 3 other half marathon scheduled there will be other opportunities to push the pace. I'd rather finish with something in the tank at this point, so that is the main goal.

As Jennifer likes to say, "Eye on the prize." January 15, 2011 is that date.

The Big Fail: Amputee Distance Record Keeping

"Truth is the mother of hatred."

 - Decimius Magnus Ausonius (ca. 310–395)

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Recently Ossur, the large orthopeadic/prosthetic company headquartered in Iceland, posted on Facebook about an upcoming race for Richard Whitehead, the bilateral above knee amputee distance runner who has run some amazing times:

"Ossur  Team Össur member Richard Whitehead will be one of many to compete in this weekend's Reykjavik Marathon. Richard is a bilateral above-knee amputee and the world record holder in marathon with a time of 2:56...beat that!"

What is unfortunate is Ossur either did not know, which I want to believe, or chose not to reveal that there are no official world records for amputee distance runners. I think they simply did not know when I asked them about this on Facebook, as they used Richard Whitehead's own website and an on-line article that parrots the same line as their basis of fact. I posted the link to the IPC site where clearly no records exist but Ossur did not retract the claim.

I was violently ad hominem and profanely attacked on the message thread with no intervention by Ossur to set the story straight as I write this post.

*******

Anyone who has been following me or my blog knows I admire the times amputees have set, from Richard Whitehead to Rick Ball to Amy Palmiero-Winters on down the line. When I saw these statements of "world records" I started looking for them, as I was interested in the prior record holders, the progression of times, and if as a masters runner if any might be within my reach.

I did extensive research with the IPC, IWAS, USAT&F, BlazeSports, DS/USA, US Paralympics, and Runners World; I asked many amputee athletes and coaches including Scott Rigsby, Kelly Luckett, Brian Frasure, and others. I came to the realization no official body kept these records for distance events. 

The records are kept here.

Here is what happens when an amputee distance world record is claimed: Let's say Rudy Tolson-Garcia tomorrow runs a 2:49 marathon. Doesn't matter where. By current amputee protocol, he could claim the world record from Richard Whitehead, simple as that. No organization would verify it like the IPC or the IAAF.

Athletics Canada stated the plain facts here, bless them for being honest and truthful:

"Please be aware that we do not promote Rick Ball’s times as a “World Record” but rather as a world leading time.  World Records can only be achieved at IPC sanctioned events but (sic) IPC-licensed athletes."

Let me repeat that last sentence:

"World Records can only be achieved at IPC sanctioned events but (sic) IPC-licensed athletes."

Perhaps this mini-tempest will result in the records being kept. Perhaps I could have handled it better...it is not like, though, I haven't brought this subject up before and others could have corrected this serious "mistake." This isn't about feeling good or sitting around a campfire singing "Kumbaya." I am NOT attacking my fellow amputees, never have and never will.

I wrote clearly what needs to be done here.

Ossur, you can help. These times can be accurately called "World Leading" or "Unofficial Record" or perhaps, if/when the IPC is going to keep the records, a "pending World Record." It is not, however, a world record.

*******

In closing, I think it is unfortunate that it was perceived and misunderstood that I was somehow attacking Richard Whitehead personally. Nothing could be further from the truth. No, but I am saying it is wrong for him or others to claim records that simply do not exist. I doubt that will be realized unless Ossur and others step up.

The records need to be kept for all time and for all to see. Those who set the records yesterday, today, and tomorrow should receive the recognition of an amazing accomplishment.

Let's make this right.

*******

8/28/2010 Update: Ossur still has not addressed this issue on Facebook. Their silence in allowing the claim to stand and for others to demean my character is something I find highly unfortunate. Silence does not absolve guilt, it confirms it.

9/1/2010 Update: Richard Whitehead (and others) still claims World Records although the IPC does not currently recognize any of these records. This is wrong. As an amputee, I feel a dark injustice is being perpetrated here. When you know something is not true and claim otherwise, you move into the realm of the lie. Why?

The Top 100

On Saturday, August 14, my surgeon Dr. Blake Ohlson asked that I join him in a talk to approximately 100 nurses at Roper St. Francis Bon Secours Hospital about elective amputation. I did not hesitate to agree. There was one little problem: outside of speaking to my office about IT issues - and often being preempted - I had not spoken to a large group before. I suppose what allowed me to agree so quickly was I felt knowledgeable about the subject matter, having had to make this decision myself.

I do not have a good speaking voice. Running tends to make me hoarse and have a higher timbre, so I hoped this would not be too much of a distraction to the audience. Having lived in the South all my life no one is going to mistake my vocalizations for the melodious James Earl Jones. Something like Americans and Brits being separated by a common language.

*******

I met Dr. Ohlson prior to his presentation and had a nice chat with him. So often physicians are aloof and appear dispassionate, but as I have come to know my doctor better I am convinced he has a deep reverence for his patients and the quality of their lives. He genuinely cares for their well being. It is an intense empathy; to hear him talk about losing sleep over performing these operations indicates his own humanity is touched by his patient's lives.

I have had some excellent physicians during my 57 year walk-about on this planet, but few have made me understand that as fellow human beings they indeed feel my pain...and aspirations. Dr. Ohlson among these notable exceptions and an exceptional man. A.k.a. "The Rock Doc," he is also an accomplished musician, founder of the band the Steel Petals.

*******

My talk was from my original childhood accident through my training for the Charleston Marathon today. The nurses were very gracious and I was thrilled with the privilege to be able to thank my surgeon and many caregivers personally. They deal with extreme opposites, of things mundane and mortality. What would we do without people willing to give so much of themselves for people who are often in pain and angry and without hope?

All I know is they took excellent care of me; respecting my mind, body, and soul. I thanked them then as I do now and I can never think them enough. All have helped bring me back to the life I loved.

*******

Such a talk, at least for me, breeds some deep introspection. One thing I have read about from some of my fellow amputees is this: even if they could have their intact, anatomical limbs back, they would not accept them. Although I had some understanding of this thought and have been examining the reasoning on occasion, I can say shortly after this talk that I came to fully embrace it myself.

I don't like dealing in what-ifs and fantasies 'what if I win the lottery' scenarios. But I can't think of any other way to come close to explaining this idea at the moment.

If I could have an intact and fully functioning foot back, at the expense of the experiences I have been through and the people met through this journey, would I do it?

No. The loss would be too great.

The loss of friends like Ashley whose courage and kindness knows no human bounds; the amazing truth that when I could not love running more it has been multiple several times over; having the opportunity to talk to the St. Francis nurses and let them know they do make a difference, a life changing difference in people's lives for the good. Many times a week something else happens that makes me think what an extraordinary life I  have been given.

No. I would not change it.

I never thought of myself as an inconsiderate or unsympathetic person. Oh sure I have done my share of dumb things and made some stupid statements, but I have no intentions of hurting anyone. I had a mentally challenged friend with a cleft palate in the third grade who helped me hang the tetherballs before recess. When I slide down a creosote pole after clipping one of the tetherballs in place and got a long splinter in my leg, our recreation job was dissolved. The one thing that stays with me to this day is his name was Tim, but wanted to be called Richard. He wanted to be like me. I miss our friendship.

I wish I could have talked to the nurses more to the how my life richer for this one-footed journey. For now some of my posts here will have to suffice where I have time to collect my thoughts and try to find the words to express them. Nothing can be changed, there will be no going back, and there are no regrets. Nor would I want it.

"The amazing will be seen every day."

Kiawah Island Marathon Supports Challenged Athletes!

In the biggest of big news, the Kiawah Island Marathon will have Mobility Impaired Divisions at their race on December 11, 2010.

That's right, this year!

Shortly after signing up for the Kiawah half marathon a couple of weeks ago, I wrote an email requesting that this division be considered for their race. After a lukewarm reception by the Cooper River Bridge Run for an MI Division where no decision (AFAIK) has been reached, I was truly not expecting such a quick and warm embrace of the idea. In the last 10 years Kiawah has only had about 2 wheelchair participants; all in all disabled athlete numbers are a tiny fraction of any race. As an amputee runner, I have not seen a fellow MI athlete at any of my races, but that is about to change.

I received a response from Beth Puckett, with the Recreation Group Planning & Marathon Administrative Office for the race, and to my shock she said they would create Mobility Impaired Divisions for this year. Wow, what a great opportunity for mobility impaired runners to compete in their own division!

Already marathoner/ultra marathoner and Getting2Tri run coach Kelly Luckett has signed up for the 26.2, and I hope to hear from others soon.

If you are a mobility impaired athlete, please come run one of these outstanding races. My first marathon was at Kiawah in 1991, and I have run the half and now obsolete 5ks there over the years. I can attest to an outstanding organization that will not disappoint you. Due to the relatively small size of the island, the race has a participant cap. However, if you are a mobility impaired runner and the general registration is closed, write to Beth as mentioned on the marathon website and she will get you signed up. But don't wait, because the spots will not be held indefinitely, so I would encourage you to sign as soon as possible.

Here is what the race website says:

Mobility Impaired Runners

Individuals with permanent disabilities that affect ambulation and who would like to register in order to be put in this class for race result purposes, please register as usual and then contact Kiawah_marathon@Kiawah resort.com . A member of the Race Administration office will contact you and give further information.

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Hope to see and meet some of my fellow amputee runners there. It's going to be a great day to run!

We all scream

A few days ago I had just started my run when I observed kids running at the far end of our block. As I turned the corner more kids were pouring out of their homes. None were half my height and all were in flights of panic. And perfect joy.

Screaming and running...little boys and girls, not a parent in sight.

Carnival tunes were in the air and I when realized I was running.

Running to the ice cream truck.

FOP Marathon Update

 Ashley Kurpiel and Rajesh Durbal at the 2010 Getting2Tri National ParaTriathlon Camp

Last time I checked we had 3 people using FirstGiving to fund raise for FOP (Fibrodysplasia Ossificans Progressiva). 3 people, and I was late to the show. My fund raising site is here.

This made me think about fund raising and research in broad terms: what we do and how we do it. Let me explain.

There are many diseases that affect more lives than FOP. As Ashley Kurpiel mentioned in her video here, FOP is an orphaned cause. So why does anyone care? Millions live with, are transformed by, and die from cancer; we probably all know someone who has battled this dreaded monster. My grandfather, father, and brother have all succumbed to heart disease, why don't I fund raise for that?

I know people who do and have done fund raising for many causes; they have raised money to build facilities or to help offset costs to families. It is in many people's core nature to want to help others in need or distress. This bond helps define us as human beings.

So who do you try to help? How can you choose from an unending parade of causes, each one wrenching your heart when you see other people's pain and suffering? Why would you not want to help the cause that can affect the most people, like cancer research or heart disease?

Although we do help with these causes, I chose FOP because of my friend Ashley. It is an emotional calling, because I know she is one of the most courageous and kind people you could ever meet. Although her condition limits her mobility, it does not limit her love of life. She knows there are other Ashleys who will be born with FOP and strives to end this future for them. I run to help her make this dream possible.

There are a number of people I admire deeply for their fund raising love for their friends, including my step-daughter Becca Winn; my friend and coworker Betsy Ellingson; mighty Texan Joe Marruchella; a man making a difference, Christoper Wilno; and from across the pond, Ian Mountford. My wife Jennifer has raised money for MS research with the MS150 ride. There are many others, each of us know someone on a mission to help save lives or improve our human condition.

My fund raising efforts go directly to IFOPA through my FirstGiving site. This seemed to me to be the most efficient way to raise money with minimal overhead. My marathon is local, so I will not have to spend any money on travel or other expenses, and intend to make further donations to reflect those savings. Originally I had not put a goal amount on my FirstGiving site, but decided we all needed a target to shoot for and decided on $5000. It's an amount I think we should be able to raise that can offer some impact on this rare and debilitating disease.

Please help us help find a cure for this disease. Truly any amount is welcomed and appreciated. Each and every dollar counts, who knows which dollar will be the one that helps buy the researchers the time to say: WE HAVE FOUND THE CURE. Oh happy, happy day. 

As I think of my upcoming races and finally the marathon on January 15, 2011, I am humbled by the kind and noble spirit that is my friend Ashley Kurpiel and all those diagnosed with FOP. Their inspiration drives my heart forward, and you can help us all with your donation.

Thank you one and all.

blackbirds

we are the broken, the torn asunder

damaged deformed defective

the scarred

wounded and bloodied

split and stitched

we survive

the anvils of crush

the shrapnel of hate

from dirt and metal and asphalt and ice
from mothers womb
and concrete sheets

we are extracted

asymmetrical scraps of what we were

once perfect in our imperfection

wholly we you me

we rise and rise and rise
and rise

on screwed black wings patched with pure will

destiny drives us to heights unattained

in dreams