2018 Blog - One Final Paralympic Run
Blog 3 - The Downhill
A few random thoughts before I get into the main topic of the downhill race.
Michaela Shiffrin is as good as they say and is as nice as she appears. Cade and I have met her two or three times and Cade sat next to her at one of the many, many, many, many, many, many, many, many events held to honor our accomplishments. OK, perhaps we’ve only attended one such event but we were fortunate to sit next to Michaela and she is a delightful young woman, an unbelievably good skier and an ideal representative of the US.
Marcel Hirscher of Austria won the Super-combined gold last night and, though this doesn’t always happen in the Olympics, this is a good outcome because he has been the best all round ski racer the past several years (since Ted Ligety and Bode Miller of the US became injured).
Very impressive that Shawn White can remain at the top of the half pipe world after all these years and with all his commercial success and obligations.
Because many of you are skipping Valentine’s celebrations tonight to watch the men’s Olympic downhill at 6:00PM US pacific time (weather permitting), I’d like provide some perspective on the downhill event. Television does not, unfortunately, capture the speed of the skiers, the sometimes extreme slope of the hill, the length of the jumps or the power of the skiers. Hopefully this commentary will provide some info about the athleticism, courage and skill of these remarkable athletes that enables you to more fully enjoy the Olympic alpine racing.
The Downhill Event
There are five alpine ski races and, in descending order of ground speed they are: downhill, super-g, giant slalom and slalom. The fifth event is the super-combined which is a single run of downhill combined with a single run of slalom. As a race, the super-combined is attempting to identify the best all-around racer. And in an age where almost all racers either specialize in the tech events (slalom and GS) or the speed events (downhill and super-g), it does a pretty decent job of accomplishing this.
Downhill is the highest velocity ski race and the men regularly reach speeds of 95 mph and one race even had a section where they briefly clocked 100 mph. The most difficult downhill in the world, the Hahnenkamm in Kitzbuhel, Austria, reportedly has a top speed of 95 mph and has a jump where the racers reportedly can fly 180 feet when done correctly and 260 feet when the ‘pre-jump’ or ‘press’ is mistimed. For frame of reference, a skydiver freefalling in the belly to earth position falls at 120 mph per Wikipedia.
At these speeds it is obvious that downhill is an unsafe event and, unfortunately, two young men died racing or training downhill last year. Knee and back injuries are, unfortunately, very common and a downhill in Germany just two weeks ago injured two American women who were bound for the Olympics. Here is an article about the risks and perils of downhill: https://www.nytimes.com/2018/02/10/sports/olympics/skiing-downhill.html.
The speed, incline and forces of the downhill are often best seen during a crash. Here are two links to crash compilations and many more can be found on YouTube:
I’ll write more about our downhill race closer to the Paralympics but know that our top speed is typically 75 to 80 mph and our jumps are much smaller. We may fly 20 to 80 feet and we will not get nearly as high as the able bodied racers. Our courses are de-tuned a little because our adaptive equipment can’t handle the same forces that an able bodied athlete can. That said, the racers on our circuit fall and are injured more frequently than the athletes on the able bodied circuit. More on this at another time.
The PyeongChang Downhill
The ‘world cup’ race circuit is the elite alpine (and Nordic) racing circuit. The world cup race season lasts all winter and has races in Europe and North America. When the Olympics are held at a ski area that hosts world cup races, the downhill races are, by default, some of the toughest downhills in the world. This was the case at Whistler which had previously hosted world cup downhills. It was also true at Sochi where Russia built a race venue capable of hosting world cup races.
The PyeongChang downhill is purpose built for the Olympics and some coaches that know PyeongChang and know the world cup downhill races believe the PyeongChang downhill is about 50% as difficult as the most difficult world cup downhill, the Hahnenkamm in Kitzbuhel, Austria. The best downhill racers can still win in PyeongChang but their extra skill has less value on an easy course. On an easier course, a greater number of racers have the opportunity to have that elusive near flawless run.
The easier PyeongChang downhill may enable a less experienced downhill racer like Mikaela Shiffrin to be competitive (Shiffrin mostly races slalom and giant slalom). Lindsey Vonn has been the best downhiller in the world for a long time, and she should get on the podium, but more racers will have a chance to compete with her on this course.
People that haven’t witnessed my lifetime of athletic heroics will sometimes ask, “umm, ah, pardon my asking, but, ahem, can ski racing really be a challenging sport if, you know, an old, ah, slightly squishy guy like you can do it?”
Pretty fair question actually so let me provide some info on some athletes.
Bode Miller of the US (now retired) and Aksel Lund Svindal of Norway (photo above and below) have arguably been the two best downhill racers for the past 10+ years. Miller is 6’2” and Svindal is 6’2”, 215 lbs. Like all elite racers, Svindal - in the photo below - achieves tremendous angulation. Notice his inside hip is only an inch or two off the snow and he could be doing this at 80+ mph. Please also notice the grimace on his face. Though Svindal is tremendously strong, he must put all his effort into almost every turn. According to an article in Popular Mechanics and elsewhere, ski racers regularly incur g-forces of 3.5. In the photo below, Svindal could effectively be leg pressing over 700 pounds on his outside ski where perhaps 1/16th of an inch of his edge is digging into the hard ice. And he must do this while the ski is turning, while he is adjusting his balance and while he and the ski bounce on the rough terrain.
Here are some video highlights of Bode that hopefully show the athletic ability of elite ski racers: https://www.youtube.com/watch?v=ZS4kJOpJfHE
Here is a link that shows some of Svindal’s, Miller’s and Michaela Shiffrin’s summer workouts so you can see they are as fit, strong and balanced as any elite athlete:
Bode Miller: https://www.youtube.com/watch?v=kK3xuz66zTQ
As many people are aware, race organizers attempt to hold races on hard, icy surfaces. This is done for two primary reasons. First, harder surfaces better separate the most skilled racers from the less skilled racers. For example, a hard icy course will generally favor the racers with the best technique and the most strength/power. Second, a hard surface does not get deep ruts and thus the course remains more consistent and equitable for the later racers.
So, just how hard is the surface on which the top athletes compete? Whenever possible, this surface is nearly as hard as an ice rink (the goal is to be as hard as an ice rink but that is hard to achieve). The race run is essentially a block of ice on the side of a mountain. The snow/ice is so hard that the people who work on these courses that don’t wear skis (e.g. gatekeepers), wear crampons. One or a few runs on this surface will dull the edges of a finely tuned ski. Sunlight and moonlight often reflect on the polished surface.
To make the surface this hard, the ski areas saturate the snow with water multiple times until the snow is completely laden with water and then they let it freeze into an 8” plus thick block of ice. If this is done early in the season for a mid or late season race, the ski area will scrape all new snow off the race hill surface throughout the season in order to preserve this ultra-hard snow.
In order to ski at these speeds under these conditions, the racers use special equipment. Downhill skis are 218 cm long and 65 mm wide under the boot. The length helps stabilize the ski and the narrow width helps the racer better hold the edge in the snow. The side cut radius of these skis is 50 meters or greater and a pair of downhill skis with bindings weighs approximately 25 pounds. By comparison, most free skis will weigh approximately half this weight and will have a turning radius ranging from 15 to 21 meters.
Ski race bindings usually have a maximum setting of 20 DIN and the racers will have their bindings set to 20. A ski shop typically sets the bindings at 8 for an expert skier.
Downhill racers ski on a little softer race boot so they can feel the snow and feather the pressure on the ski. Their downhill boots will likely have a 130 to 150 flex and their slalom/giant slalom boots will likely have a 150 to 180 flex (a standard men’s ski boot will range from 90 to 110 flex). Race boots are also narrower than regular ski boots so that the boot doesn’t hit the snow when putting the ski on extreme edge.
Hope the above helps you better enjoy the downhill and the racer’s efforts. Here is an article that covers many elements of ski racing should you want to understand more about each event: https://deadspin.com/the-non-skiers-guide-to-ski-racing-and-ski-crashing-1519289681
After watching the first days of the Olympics, I do think we can make some enhancements to our sport:
- 1. Sequins and frills. If it works for ice dancers, surely we should use and own sparkly and frilly speed suits.
- 2. Named moves. If figure skaters can name their spins and jumps, we should name our falls. “oh, he’s down! He flew off that jump in the upside down Hermann Meier, landed on his head, went into three Bode Miller ragdoll cartwheels and hit the safety netting at 60 mph where he catapulted up and over in Klammer roll! Surely the judges must give him a high score!”
sd Hope you are enjoying the Olympics.
Blog 2 - Observations about Skiing in the Alps
I wrote my first blog during the first few days of a two week trip to Europe that ended on January 27th. Unfortunately, all the remaining six races (of eight) were canceled due to too much snow and wind. Because we don’t have a race update from that trip, I’ll provide a few observations about skiing and ski racing in the Alps
The cliff notes version is, go ski a few of the massive European ski areas during a good snow year. Many of the areas in the alps are far bigger than the Colorado resorts, have enormous amounts of ungroomed terrain and have good family owned restaurants spread all over the multiple mountains that make up most of these massive resorts. And a day pass that is good for both Val d’Isere and Tignes only cost 57 euro per day.
Skiing in the Alps
I have been fortunate to race in Europe usually twice per year for the past nine years. Unfortunately, Cade and I usually only have the time and energy to ski the one to four runs associated with the race hill. We were able to ski a little of St. Moritz, a middling amount of Veysonnaz (none of Verbier which is connected to Veysonnaz and is part of the “4 Vallees” combined resorts) and a large portion of Val d’Isere/Tignes this year due to race cancelations. Below are some of our discoveries that I hope you find interesting.
· According to multiple web sites and per a review of many resort websites, the 10 largest ski areas are in Europe. Whistler and Park City are the 11th and 12th largest areas according to this article: https://www.cnn.com/travel/article/worlds-biggest-ski-areas/index.html
· For a frame of reference, Vail has 5,289 acres, Crystal Mountain has 2,600 acres, Whistler-Blackcomb has 4,757 acres of skiable inbound terrain and 8171 acres of total terrain. By comparison, Val d’Isere/Tignes has 96 lifts, over 186 miles of groomed runs and has 25,000 skiable acres.
· Five or six of the twelve largest ski areas in the world are located in France.
· The skiers in the French Alps and in the French speaking portion of Switzerland remind me of northwest skiers, except in two ways. The similarities are that these skiers start early and finish late and a large percentage of skiers are good to expert (am excluding the many vacationers that clearly ski less than they party). The differences are that many of these skiers manage to smoke a pack of nice smelling cigarettes on the hill while others take a two hour lunches which feature six espresso shots and two glasses of wine.
· The lift lines are an everyman for him or herself battle for the entire length of the line. If you are not on your game, you could be overtaken by half the people in line behind you. My teammates have even seen a skier take off his skis, walk through the lift line in their boots and then step back into their skis at the front of the line. And the tails of your skis will be trampled upon the entire trip.
Photo above Val d’Isere
Ski Racing Culture in the Alps
Austria is the Fatherland of modern ski racing. Marcel Hirscher is the best slalom and GS skier in the world today and the Austrian coaches are only partially kidding when they say he would be elected president were he to run for office. World Cup ski races usually have a bigger television audience than soccer and much larger than any other sport. 60,000 people attended a night slalom at Schladming three weeks ago. Schladming is roughly 90 minutes from Salzburg. Junior races that feature the up and coming skiers can attract up to 20,000 spectators. When driving through the Austrian Alps, it seems like it’s one big interconnected ski area.
Ski racing and hockey are the biggest sports in Switzerland and I’m not yet certain which draws a larger TV audience. Ski racing is so popular that coffee creamers come with pictures of ski racers and are considered collectibles. I can’t believe the talented Coffee Mate product manager from the late ‘80’s whom is reading this blog didn’t come up with this concept.
It’s past my bedtime so that’s all for now. Am hoping to write a quite bit of info about skiing downhill before the men’s Olympic downhill. Hopefully I can give some insights and help those of you that haven’t run downhill enjoy the high risk sport a little more.
Blog 1 – Observations about the Difference 4 Years Make
To my ongoing surprise, several friends have asked that I blog and post to social media about how Cade is once again dragging my deteriorating and skill challenged body down the race course in preparation for the upcoming Paralympics. If you would like to be removed from this distribution list, please let me know and I’ll spare you my drivel.
Should you care to view our races throughout the season, try these sites:
- · www.paralympic.org/alpine-skiing-world-cup-2018 -
- · Playo.tv – scroll around the homepage and select the videos that say “Para Alpine Skiing” or that have a picture of an ‘adaptive’ skier
- · YouTube – https://www.youtube.com/paralympics?utm_source=Proud+Paralympian+Newsletter&utm_campaign=3d9600403b-EMAIL_CAMPAIGN_2017_11_22&utm_medium=email&utm_term=0_460bfe3d41-3d9600403b-143557213
- · https://www.facebook.com/pg/paraalpine/videos/?ref=page_internal
Links to two of the four races that were held in Veysonnaz, Switzerland last week. I, unfortunately, made many errors in both races and we came in at the back of the pack.
- · Veysonnaz, day 1, run 1: https://www.youtube.com/watch?v=Fk_j0BxH5QY&pbjreload=10. Our run begins at 1:02:20.
- · Veysonnaz, day 1, run 2: https://www.youtube.com/watch?v=P_rgXf7xJ-c. Our run begins at 57:30
- · Veysonnaz, day 4, run 2: https://www.youtube.com/watch?v=rrBj_YXmmhk. Our run begins at 37:46
As a side note, should you be seeking a place to ski this winter or spring, the Alps have an abundance of snow. So much snow that to date, six of our eleven races have been cancelled due to a combination of too much new snow and high winds.
Will include photos of Veysonnaz at a future date when I have a better internet connection because it is a beautiful part of the Alps and has an excellent view of the backside of the Matterhorn. In the valley below Veysonnaz is the city of Sion and Sion is intending to bid for the 2026 Winter Olympics.
A few observations on the difference four, and even two years, make.
Four years ago Cade and I were arguably the leading team in the speed events (downhill and super-g) and could periodically reach the podium in the tech events (GS and slalom). Even as recently as two years ago we won speed events though I did become a seriously slow anchor in the tech events. I am hoping last year is not an indicator for this year’s results but it looks increasingly like those results could be a precursor of things to come. Regarding last year, I fell in our first race of the World Championshps which resulted in a hairline fracture to the tibia plateau and a partially torn MCL in the left knee. We were hoping that my poor results at the Pyeongchang test event last March were the result of the injury but results from two races thus far this year indicate that, as my soon to be downgraded good friend Bruce suggests, I am rapidly migrating from being well past-my-prime to seriously over-the-hill.
Top of mind list of what has changed in four years:
- · My young full time competitors have become bigger, stronger and faster while I have become older, stiffer and slower. Fortunately, my strength and aerobic levels have remained fairly constant.
- · This old dog can learn new tricks and I am skiing the modern ski racing turn better but far from at an advanced level (look up Marcel Hirscher on YouTube (or Ted Ligety of the US) to see how the best racer/skier in the world skis). I will ski approximately 150 days between the Sochi games and the Pyeongchang games and will, absent a major breakthrough, make relatively small incremental improvements. My leading competitors will ski close to 200 days this year alone and even the less well funded full time athletes will ski 150 days per year. All this training since Sochi has paid off and their improvements have been incredible and are taking the sport to levels people didn’t think could be achieved just a few years ago.
- · Recovery from race training and even from team prescribed gym workouts requires much more sleep.
- · Ski race training, at least for me, is a very aggressive and violent form of exercise. Not only am I more fatigued this year after training, I feel like my body has been more abused and beat up than four years ago. Thankfully, after training almost daily since December 1, I seem to be acclimating to this higher level of activity and punishment and am beginning to need less recovery time. That said, I don’t exactly make for a hot date because I’m usually asleep by 8:30.
- · No one would have mistaken me for a yoga master four years ago but, damn, now I need to stretch multiple times per day just to improve from stiff to inflexible.
- · The warranty on one of my knees must have recently expired
- · Didn’t know what a sacroiliac joint was four years ago (low back, pelvis) and now it’s a very frequently out of alignment and can impede just about everything.
- · The team travels with physical therapists and I was a light user of their services four years ago. Now I’m on the frequent user program.
- · I had cataract surgery two years ago and was re-classified from the mid vision impairment group to the best seeing vision group. This adds something like 6% to our time and has had a material impact on results.
- · It’s not nearly as much fun to blog when you’re not winning…and I can’t seem to readily find my sense of humor.
Hopefully we will run downhill and super-g this week in Tignes, France though it’s 50/50 at this point due to all the new snow.
That’s all for now. Best,
2014 Blog - Road to Sochi
Sixth Update from the Road to Sochi
Racing in the Visually Impaired Category
Saturday, March 1, 2014, Munich, Germany
FYI, my rudimentary website is now up and running and the blogs and race schedule are posted therein. I will attempt to imbed video links over the next day or two.
Several people have asked me what my racing experience is like. What is it like to follow a guide, what do I see, how do I race the course, etc?
At least for me, following a guide is more complicated than racing a course without a guide. When a racer skis a course without a guide, the racer can think about at least one technical ‘ski thought’ such as hand location or angulation in addition to consciously and unconsciously thinking about the race line and consciously thinking about where you are on the race course. I find that I am thinking about so many things when I follow a guide that I can’t readily think about the one ‘ski thought’.
Following a guide is more complicated because there are many more things to think about and there are more data inputs to process. For example, when I follow my guide I think about and communicate regarding the distance separating us, watching for when he initiates his turn, sometimes I think about if I am initiating and ending my turn at the same location, sometimes I glance at the passing gate and then work to reacquire the guide, I am always adjusting my line to either match my guide’s line or to cut inside his line. In addition to these aspects of following a guide, I still try to do what a regular racer does and memorize the course and, though I probably will not see where we are on the course, I attempt to know where we are on the course so that I can anticipate my guide’s ‘moves’.
All visually impaired race teams now use helmet mounted blue tooth radios to communicate to each other. And these radios are used to communicate during the entire length of the race course. I will count down the start and then communicate distance from start to finish. I don’t communicate in every turn but I communicate regularly by saying ‘good’ (meaning our separation distance is good), 10/15/20/25 feet, ‘hold’, ‘faster’, ‘go, go, go’, ‘falling’, ‘space’ (meaning the guide should look back and adjust his speed to keep us close), “late’ and/or ‘trouble’ (meaning I am off line and likely to be slowing). My guide will tell me about every aspect of the course that could throw me off balance or cause me to make a poor turn. Cade communicates the entire way down the course and his communications include terrain changes (compression, knoll, face, side hill), course conditions (icy, bumpy, hole) and rhythm changes in the course (hairpin, flush, delay, setup, tight, straight).
Evidence of the additional complexity is that once the run is finished, I can rarely remember much about the run just completed. I’ll know that I made mistakes but I won’t know where. I’ll suspect that I had bad technique in some number of turns but won’t really know until informed by a coach. In most parts of the course I can’t recall seeing my guide or the gates. This contrasts with when I was a teenager and I could pretty much remember every turn made in the course, where I made good and bad turns, and where my technique faltered or was good. I had good body and course awareness as a teen and could coach myself. Now, in the slang of my teammates, not so much.
Though I try to watch the guide the whole way down the course, following the guide feels more like watching a series of flash card images than watching a movie. I don’t know if it’s due to my sight, due to the bouncing around that occurs on the course or other but, when I am aware of watching the guide, it seems to happen in quick flashes of still images that are not that centered in my vision.
It can be hard to reacquire sight of the guide once lost. This means I must fight my junior racing experience of looking at the gates. I lost sight of Slater at the 2010 Paralympics in the super-combined when we entered the shadows and I missed a gate in an easy section shortly thereafter.
Keys to Guiding
Below are a few excerpts from a document I have created that captures what I have learned over the years. This document has proven very useful in advancing the skills and knowledge of a new guide. Have chosen just a few elements from this six page document:
The obvious goal of the team is to reach the finish line in the shortest amount of time possible. As with able bodied ski racing, this is done by optimizing as many factors as possible including line, body position, clean turns, and by minimizing errors that slow the team. Unlike able bodied racing, achieving VI racing optimization requires a high degree of teamwork between guide and athlete.
This document focuses on the unique elements that a ski racing team must work to master in order to achieve their optimum performance. A team skis at its optimal speed when the guide and athlete are in perfect sync; being in sync means they maintain a consistent distance between themselves (no rush hour surging and stopping), are skiing sufficiently close to minimize the complicating elements introduced by following a guide (see #1 and ____ below) and are skiing at the athlete’s maximum capacity.
The athlete is slower than the guide so the goal of the guide is to find an ‘aggressive’ line that the athlete can manage, to provide an example of good form, to communicate material issues about the course (terrain, gate combos, etc.) and to ski a speed that pushes the athlete to his or her limit.
Several of the specific items we have learned about guiding follow:
Distance between the athlete and guide is the most critical element of teamwork. As a rule of thumb, the team should attempt to maintain a half gate distance behind the guide in all events and the distance should never exceed one gate or direction change.
b) The guide will pull away from the athlete in many locations including: when going onto steeper terrain, flushes, more difficult turns, choppy/rough/rutted terrain. The guide needs to know to adjust their speed at these locations so they don’t gain too much distance on the athlete.
c) The distance at which the athlete can follow the guide is somewhat dependent on their vision. The worse their vision, the closer they need to follow the guide.
d) The guide should ski with excellent racing technique to provide an example for the athlete. This is important because most/all athletes will unconsciously copy the body position and technique of the guide (to a greater or lesser degree based on their skiing skills).
e) By my calculations, the athlete follows the guide by approximately 1/10th of a second to at most a half second when they are ideally spaced.
Selecting a Guide
Am considering a rare and risky guide change with just days to go before the Paralympic downhill. This would be unorthodox but a 6’6” 320 pound guide would be fast, would create a huge draft and would be easy to reacquire should I lose sight of him. Russell Okung wants the job and I can afford his daily rate but I can’t afford the insurance the Seahawks and his agent require. In case you aren’t sure, that’s Russell on the right wearing my silver medal from 2010. As you can see, everyone, including a Superbowl champion, wants a piece of the Paralympic action.
Brief Overview of the Winter Paralympics
To provide a size comparison, the US sent 230 athletes to the Sochi games. Approximately 90 US Paralympians will compete in Sochi. The Winter Olympics has a total of 98 events in 15 winter sport disciplines (Alpine Skiing, Speed Skating, Hockey, etc.). The Winter Paralympics consist of the fifteen events in the five disciplines below:
- 1. Alpine Skiing – five events for men and women. Downhill, super-g, super-combined, GS & slalom. Alpine skiing has races for visually impaired, standing and sitting athletes. Alpine skiing now also includes Boardercross for standing athletes.
- 2. Nordic Skiing – five events of varying distance for men and women. Nordic skiing has races for visually impaired, standing and sitting athletes.
- 3. Biathlon – three events of varying distance for men and women. Biathlon has races for visually impaired, standing and sitting athletes. Remarkably, the visually impaired biathletes sight their rifles via sound; they hear a noise when their rifle is properly on target.
- 4. Sled Hockey – tournament is considered a single event.
- 5. Curling – tournament is considered a single event.
History of the Paralympics Provided by the IPC -http://www.paralympic.org/the-ipc/history-of-the-movement
Sport for athletes with an impairment has existed for more than 100 years, and the first sport clubs for the deaf were already in existence in 1888 in Berlin.
It was not until after World War II however, that it was widely introduced. The purpose of it at that time was to assist the large number of war veterans and civilians who had been injured during wartime.
In 1944, at the request of the British Government, Dr. Ludwig Guttmann opened a spinal injuries centre at the Stoke Mandeville Hospital in Great Britain, and in time, rehabilitation sport evolved to recreational sport and then to competitive sport.
On 29 July 1948, the day of the Opening Ceremony of the London 1948 Olympic Games, Dr. Guttmann organised the first competition for wheelchair athletes which he named the Stoke Mandeville Games. They involved 16 injured servicemen and women who took part in archery. In 1952, Dutch ex-servicemen joined the Movement and the International Stoke Mandeville Games were founded.
These Games later became the Paralympic Games which first took place in Rome, Italy in 1960 featuring 400 athletes from 23 countries. Since then they have taken place every four years. In 1976 the first Paralympic Winter Games were held in Sweden, and as with the Summer Games, have taken place every four years.
Since the Summer Games of Seoul, Korea in 1988 and the Winter Games in Albertville, France in 1992 the Games have also taken part in the same cities and venues as the Olympics due to an agreement between the IPC and IOC.
Also in 1960, under the aegis of the World Federation of ex-servicemen, an International Working Group on Sport for the Disabled was set up to study the problems of sport for persons with an impairment. It resulted in the creation, in 1964, of the International Sport Organisation for the Disabled (IOSD) who offered opportunities for those athletes who could not affiliate to the International Stoke Mandeville Games: visually impaired, amputees, persons with cerebral palsy and paraplegics.
At the start, 16 countries were affiliated to ISOD and the organisation pushed very hard to include blind and amputee athletes into the Toronto 1976 Paralympics and athletes with cerebral palsy in 1980 in Arnhem. Its aim was to embrace all impairments in the future and to act as a Co-coordinating Committee. Nevertheless, other disability-orientated international organisations such as the Cerebral Palsy International Sports and Recreation Association (CPISRA) and International Blind Sports Federation (IBSA) were founded in 1978 and 1980.
The four international organisations experienced the need of coordinating the Games so they created the "International Co-coordinating Committee Sports for the Disabled in the World" (ICC) in 1982.
The ICC was originally composed of the four presidents of CPISRA, IBSA, ISMGF and ISOD, the general secretaries and one additional member (in the beginning it was the Vice-President, and later on the Technical Officer). The International Committee of Sport for the Deaf (CISS) and International Sports Federations for Persons with an Intellectual Disability (INAS-FID) joined in 1986, but the deaf still maintained their own organisation. However, the member nations demanded more national and regional representation in the organisation.
Finally, on 22 September 1989, the International Paralympic Committee was founded as an international non-profit organisation in Dusseldorf, Germany to act as the global governing body of the Paralympic Movement.
The word “Paralympic” derives from the Greek preposition “para” (beside or alongside) and the word “Olympic”. Its meaning is that Paralympics are the parallel Games to the Olympics and illustrates how the two movements exist side-by-side
Fifth Update from the Road to Sochi
Friday, February 28, 2014, Tarvisio, Italy
Cade and I made an unplanned trip to Tarvisio, Italy for the final World Cup races of the season. Tarvisio is located in the Northeast corner of Italy in the Alps. Tarvisio is approximately 20k south of Austria and 20k west of Slovenia. It is truly one of the most beautiful places I have ever been and I posted a few pictures from their tourism site below. Some of the mountains near our ski resort are as rugged and handsome as any I have ever seen.
Despite the distractions of all the beauty and beautiful people and fashion in Italy, Cade and I performed very well in the races. We won both downhill training runs (not that this matters) and won both downhill races. Am pleased to report that each run was faster than the preceding run. We also won the super-g and finished third in the super-combined.
If I obtain some decent footage from the coaches, I’ll post links to the videos at a future date.
Overview of Adaptive/Disabled Racing
Several people have asked for an overview of adaptive/disabled racing so that can better understand our unusual sport.
There are three main categories of disabled ski racing, or as it is beginning to become more commonly called, adaptive ski racing. The three main categories are sitting skiers, standing skiers and visually impaired skiers. Gold, silver and bronze medals are awarded to racers in each of these three categories.
Each of these main categories has multiple subcategories. The subcategories are designed to enable racers with differing disabilities (within the main category) to compete against each other by applying a time adjustment factor to each subcategory. For example, within the standing category, a racer with one leg can compete with a racer that is missing a hand because the single leg skier receives a ‘time adjustment factor’ that gives him or her more time to complete the course. The factoring system is based on statistical modeling and does a moderately reasonable but far from perfect job of equalizing the various disabilities.
Within the visually impaired category, there are three subcategories named B1, B2 and B3. B1 racers are completely blind and must wear tape over their goggles to prevent any light source from reaching their eyes. The guides for B1 racers communicate through speakers located on their lower backs and the B! athletes follow these sounds and commands down the race course. B1 racers receive a time factor and have twice as much time to complete the race course as a B3 racer. For example, a B1 racer would beat a B3 racer if the B1 completed the course in 118 seconds and the B3 racer completed the course in 60 seconds.
B3 racers are legally blind but they have, to my way of thinking, a fair amount of sight remaining. B2 racers fall in between the B1 and B3 racers. B2 racers have approximately 5% more time to complete the course than do the B3 racers.
The info graphic below explains a little more about the VI (visually impaired) subcategories:
The video at this link also explains how visually impaired ski racing works:
The standing category has numerous subcategories because there can be so many more combinations of disabilities. The standing category must have, for example, sufficient subcategories with the appropriate time adjustment factor to enable combinations of all these and more disabilities to compete with one another: missing one leg, missing one arm, missing a hand, missing two hands and two feet, missing one arm and one leg, having all limbs but can’t control various limbs due to a birth defect, nerve or brain disorder.
The sitting category also has multiple subcategories. The subcategories are mostly based on how much muscle (torso or core) the athlete has remaining. The subcategories are defined as athletes with muscle control of the full core/abs (such as athletes with double leg amputations), above the belly button, including & above the highest ab muscle, above the nipples.
The above provides a basic overview of the classification system. Should you desire more info, here is a link to the official “Layman’s Guide to Classification in Paralympic Winter Sport”: http://www.paralympic.org/sites/default/files/document/121203164523073_WinterSportLaymens.pdf
Fourth Update from the Road to Sochi
Monday, February 24, 2014 (written several nights earlier on the night Ted Ligety won the GS)
We arrived in Tarvisio, Italy Sunday for the World Cup finals. These two downhills and super-combined will serve as our final tune-up race before the Paralympics. Have been racing with new guide Cade Yamamoto since early January and we need all the training and races we can muster before the Paralympics.
Am writing this update as Ted Ligety is winning the Olympics GS. Ted has been the best GS skier in the world for several years. He is arguably the best skier in the world with the best technique. Evidence of this is that he won the GS, super-g and super-combined at last year’s world championships. Ted and, I believe, Michaela, have become the best via innovation. Below is a link to an excellent article with videos of what makes Ted faster than his competition.
Because Ted Ligety and Mikaela Shiffrin both won as the favorites in their respective events, I wanted to take a little time to discuss how hard this is to accomplish. One example of how hard this can be is that I don’t believe any of the other favored men won gold besides Ligety. I don’t know enough about the women’s results to know if this held true for the women.
Unlike men's figure skating, a ski racer can't fall on his ass twice and where a frilly blouse and still win a gold medal. On any given day 5 to 15 racers could win a race and, perhaps as many as 20 to 30 racers could win were one of these 30 to have their race of a lifetime. Andrew Weibrecht is a good example of this. His only podium finishes have been in the Olympics. He has the talent and trains hard but his best runs come together at the Olympics.
There is no such thing as a perfect run in a ski race. A ski race is a series of good to great turns interrupted 5% to 25% of the time with of minor and major errors that require some form of recovery that costs time. The best ski racers either build a lead when making their best turns and don't lose that advantage when they make their errors, or make fewer errors or make better recoveries from their errors.
In football, they say a player gets into the flow of the game after they get their first hit. A ski racer does not have that luxury. A racer must come out of the start and be on their game immediately. As you may have seen in the men's slalom, errors in the first date or two can affect the rest of the run.
Snow and weather conditions can vary considerably from the first racer to the last and where the racer runs can significantly influence the outcome of the race.
Different skis work better under different conditions and selecting the optimal skis for the conditions can have a material impact on the outcome of the race.
Though a two run ski race typically lasts nearly three minutes and a one run ski race last approximately two minutes, it is very common for the best racers to regularly win by anywhere from a few one hundredths of a second to rarely more than 2 tenths of a second. This narrow margin of victory over a relatively long race means the favorite cannot afford to make a large error.
Ski racers generally try to ski at 100% of their ability for all but one or two turns. Racers will ski on that ragged edge except in one or two gates where they will set themselves up for a difficult turn or difficult face. A fair number of racers in each race will fall or make significant errors because they are all skiing on that edge.
There is obviously much pressure to perform at the Olympics and there is even more pressure to perform when you are the favorite to win. And that pressure can compound the issues outlined above.
So, in my opinion, it can be difficult to win as the favorite in the Olympics. So hats off to Ted and Michaela for being able to win as the favorites.
Third Blog Update from the Road to Sochi
February 16, 2014
Race Results, Copper Mountain, January 16 - 20, 2014
The Copper races consisted of a GS on Friday, two slaloms over the weekend and a GS on Monday. I had a very good series of GS and slalom races at Copper in early December so I my hopes we high for these races. Unfortunately, didn’t finish any of the races so I’ll keep the race results update very short.
Below are just two videos of our runs:
GS #1: finished this run but was too round and was, therefore, slow: http://www.youtube.com/watch?v=CQ2m3laR7IU
Slalom #1: hooked a tip during the first run: http://www.youtube.com/watch?v=VxjXGLs7Cus
TV Coverage, Live and Delayed Streaming, and Apps
I will include this vital viewing info in all future blog updates so it is at your remote control fingertips.
TV Coverage: NBC and NBCSN will combine to air 50 hours of television coverage starting on March 7 with the Opening Ceremony. Daily coverage will follow of all five Paralympic sports in the Sochi program, before the Games’ Closing Ceremony is broadcast on March 16.
TeamUSA.org: Will stream all events live and I believe you can view replays as well (if not, see the first app below). At least I hope so because Sochi is 11 or 12 hours ahead of Pacific time depending on daylight savings. I will try to confirm.
iOS and Android Apps – I have used two of these and they work great. Info below is mostly from the seattletimes.com. http://seattletimes.com/html/businesstechnology/2022914241_reviewolympicappsxml.html
This is the go-to place for live and full-event replays from the Olympics. NBC is showing every event live, a first for a U.S. broadcaster during the Winter Games. However, even though the app is free to download, you need a password from your cable or satellite TV provider to watch much of the video.
The app offers video that doesn’t require a pay TV subscription to view, but the selection is limited. It’s more useful for the nuts and bolts on the games — results, medal standings and capsules on individual athletes. Every country is included, though there’s more available for Americans.
If you don’t have access to live video, you can at least follow what’s happening in Sochi through a live blog embedded in the app. You can also access photos and news stories
Begin by selecting your preferred language, country and time zone. Select some sports and athletes to follow. The app offers notifications when new medals are earned by an athlete or in a country or sport you follow.
This app offers a one-stop destination to view Facebook, Instagram and Twitter feeds from Olympic athletes. Create your own roster of Olympians to follow or search one athlete at a time. You can also check out everyone from a particular country, sport or event. Athletes from past Olympics are here, too. (I was initially going to recommend the U.S. Olympic Committee’s 2014 Team USA Road to Sochi app to follow athletes’ social-media posts, but the IOC app offers more options and isn’t limited to Americans).
Rosa Khutor Ski Area, Rosa Khutor Village and Races Results in the March 2013 Paralympic Test Events
Am watching the men’s Super-G tonight and that is a good reason to talk more about the Rosa Khutor ski area.
My teammates and I raced in Paralympic test events last March. Our downhill started at the Trampoline jump in the men’s downhill which is also the start of tonight’s men’s super-g. Our downhill and super-g will run on the same hill/run as the men’s downhill/super-g. TV does not show it well but the first 6 or so turns of the super-g are VERY steep. By far the steepest face I have ever raced. I thought it even looked challenging for the best skiers in the world. My concern for this face come race day in March is that it will punish any error with a fall or with a recovery that will cost the race. Coming out of the start and immediately needing to ski your best will require good mental preparation, even better execution and perhaps some good fortune.
The Rosa Khutor ski area is on the same latitude as the Pacific Northwest and the weather conditions will likely be similar to the variable conditions experienced at Whistler in 2010. The highest lift reaches 7,612 ft. Rosa Khutor is one of five ski areas all located in close proximity to the village. Rosa Khutor will reportedly be a one hour train ride from the seaside town of Sochi when the train opens in the summer of 2013.
Rosa hosted ski races all season long and they have an absolutely fantastic facility for both free skiing and racing. Though we have not raced at enough venues to know for certain, we think Rosa may now be the best ski racing venue in the world.
Many people have asked why Russia build the Winter Olympics and four new ski areas at the subtropical seaside resort town. Here is an interesting article that discusses the rapid development of the ski areas in the portion of the Caucasus Mountains that was an unknown powder paradise (it is best to use the mouse scroll wheel or drag the page slider down to view the article): http://www.powdermag.com/redpow/
Everything at Rosa ski area is brand-new and I don’t think anything was awarded to the low cost bidder. It appears Russia approached the best ski area planners, lift companies, snow making companies and snow cat companies and asked them to make Rosa their showcase installation. By way of example, Rosa had at least 40 brand-new high end snow cats that cost more than $500,000 each. Rosa had the biggest tram we have ever seen and we suspect it will be moved after the Olympics because it is designed to move spectators from the lower village to the finish area. The area had at least three brand-new gondolas and numerous brand-new chairs. Slater worked for the Sun Valley snow making crew several years ago and he believes Rosa has highest quality snowmaking equipment available and this equipment is all over the mountain. The facilities are truly remarkable and the investment enormous.
The village of Rosa Khutor is essentially a series of brand new hotels that have retail stores and restaurants on the ground floor. Most of the hotels were open but many of the restaurants and retail shops were still under construction. This village did not have all the construction, design, and fit and finish issues that have been reported in the seaside town. This site has a little more info on Rosa Khutor: http://en.wikipedia.org/wiki/Rosa_Khutor_Alpine_Resort.
The village is situated in a steep banked valley on a nice river (the Mzymta River). Below are pictures of the village. Roughly two miles from this village and roughly 1,000 feet higher is the Olympic Village which was still under construction.
Regarding the Paralympic test events, Slater was able to join me for these races and considering that we hadn’t made a single run together this year, I am pleased with how we performed.
We were scheduled to race Super-G, Super Combined, Slalom and two Downhills. Unfortunately, bad weather and hung-over European wussies caused the cancellation of the Super-G and the Super-Combined.
Links to videos of the races follow:
Downhill 2: http://www.youtube.com/watch?v=TWWaE9KVjkM. Our run begins at 37:52. Slater and I finished 3rd. This is a promising finish for the Paralympics but the course is relatively easy so there will be no room for errors next year.
Downhill 1: http://www.youtube.com/watch?v=0YqITtgOH-Q. Our run begins at 11:36. I made a very significant error in the 4th gate that caused us to finish 5th.
Slalom 1: http://www.youtube.com/watch?v=UFJraDlP1XI. Our run begins at 46:56. Slater and I were in second place following this run.
Slalom 2: http://www.youtube.com/watch?v=gYb7HqXJvSg. Our run begins at 1:06:18. I hate to include this video because I had a bad run. I was sitting back and on my heals for the entire run and that caused all kinds of problems.
We are training at Mission Ridge in Washington for the next several days (weather permitting) and then we head to Tarvisio, Italy for some final tune-up races on February 22nd. I begin posting more frequent updates from this trip via Twitter and Facebook.
Thanks again for reading my overly long missive.
Second Blog Update from the Road to Sochi
January 28, 2014
I wrote this blog entry on January 28 and am finally sending during the opening ceremonies of the Olympics. Hopefully my commentary will align with that of NBC. Comments on Sochi follow a brief update on our January races in Panorama, Canada.
Race Results, Panorama, British Columbia, January 10 – 14, 2014
Because Slater – my regular guide – now has a full time job and can’t attend all the training camps and races, I began training with a backup guide this summer. Cade Yamamoto is an excellent former racer from Quincy, Washington and the Mission Ridge Ski Team. I actually raced and was a teammate with Cade’s mom, Claudia, at Mission Ridge in the 1970s. Cade and I trained a day and a half this summer before I got hurt and then we trained for six days at Copper Mountain in early November.
Cade and I attended our first races together at Panorama, British Columbia on January 10th and we had a very strong series of races considering our limited experience together. We finished first in the downhill, first in the Super-G and second in the GS.
Below are videos of our runs with a brief commentary on each race:
All except perhaps one key competitor attended this World Cup race (World Cup races are our highest level racing circuit) so our victory is a positive sign that will be competitive in Sochi. I was surprised to win because I made a very large mistake in a key portion of the course and, in all likelihood, won because my competitors made bigger mistakes. Though I am very happy to have won, the race revealed that I am banking and sitting back too much in the tougher portions of the course. Addressing these fundamental technical issues will be a major portion of my training for the remainder of the season.
I received two back to back phone calls from my family that I didn’t answer when heading to the start of the race. I knew these calls were about my dad’s anticipated passing and I wanted to digest this news without taking the calls. I thought of my dad in the start area, spoke to him as we entered the start shack and then I can’t remember anything about the race until it was half over and I heard Cade say, “ready to grab bullet?”. At that point I was quite surprised to learn we were through the toughest section of the course and ready for the aerodynamic portion of the course.
We had a good Super-Combined race but were disqualified for a small rules violation. This is very unfortunate because we are not yet qualified to race the Super-Combi in the Paralympcs and our result probably would have qualified us.
Downhill portion of the Super Combined: http://www.youtube.com/watch?v=4hpsSP1mxj4
Slalom portion of the Super Combined: http://www.youtube.com/watch?v=_OwgIo05woY
I did not have a strong first run and finished third. We won the second run to finish second overall.
GS first run: http://www.youtube.com/watch?v=Jpsf0r-sI00
GS second run: http://www.youtube.com/watch?v=mtMW_VwmaxE
Sochi: Security, National pride and Investment
Even with very limited time to read papers, watch TV or surf the news sites, I have seen dozens of headlines and articles about the security concerns and budget overruns for the Sochi Olympics. Below are some observations on these topics based on my trip to Sochi in March 2013.
Riddle me this Batman, why was no one skiing during our races last March?
As occurs at most winter Olympics and Paralympics, the venues and athlete villages will be divided into two or more areas: the seaside city of Sochi which will host the stadium events and the ski area of Rosa Khotur which will host the alpine, snowboarding, bobsled/luge/skeleton events. I believe Sochi will even have a third village for the Nordic athletes. I did not visit the city of Sochi last year (we also didn’t visit Vancouver from Whistler in 2009 or 2010) so I can only discuss my experiences at the mountain venue.
Regarding the riddle, we were all surprised to not see people skiing at the excellent Rosa Khutor ski resort last March. At first we thought it might be closed to the public during weekdays but that was not the case. Next we thought they closed the resort for the races in order to make it easier for the staff and volunteers to run the Paralympic test races but that was also not the case. After a little sleuthing we learned that the ski area had been closed for the entire season by order of president Putin. Though it was never stated and though other blogger’s believe that the area was closed for construction, my conclusion is that the area was closed for security purposes. I don’t think Rosa Khutor was closed for construction because everything on the mountain was pretty much built. I think the area was closed to the public because it is one of the best ways to keep trouble-makers from sabotaging the ski. Imagine opening a ski area half the size (I estimate) of Whistler/Blackcomb or Vail and then not opening it to the public for multiple years to secure it from terrorists. It would be next to impossible to do likewise in the U.S.
To the credit of our hosts, there was security everywhere. We passed through TSA style screening to board the one gondola that took almost everyone to the ski area every morning (wheelchair athletes took vans via the single road to the ski hill). The bottom and top of every chair and gondola had at least one armed military person. My guide rode the chair with a military person that was skiing with what we presume was an AK-47. Huge gunship helicopters regularly flew over the area, presumably with thermal and other detection technology. The ski area can only be accessed by one road and one gondola (a second spectator gondola will operate for the Olympics) and all had security check points. We couldn’t think of ways to improve on last year’s security measures.
That said, security will require significant effort because there is much acreage to cover in the immense and magnificent mountain range.
National Pride and an International Stage to Show the Modern Russia
My first impressions of Russia were extremely positive. Russia is working frantically to put its best foot forward for the Winter Olympics and that foot will, if everything comes together, be clad in Manolo Blahnik (with perhaps some irregular stitching due to the speed at which they are working).
Based on conversations with many locals, I believe one reason president Putin desires to host the Olympics and is willing to invest heavily is that he desires to change the perception of Russia to both its citizens and to foreigners. He wants to show a ‘modern’ Russia and end the old stereotypes. Certainly the Russian people we met are taking enormous pride in these games, their hosting duties and in their modern new facilities (airports, transportation, venues, hotels, etc.). Without exception, every person I met, from hotel worker to airport retailer to ski area employee/volunteer, wants to show off the ‘new’ Russia and wants people to see that they are a modern country with a modern and vibrant economy.
And at least for the sliver of the country and people I met, these people and Sochi demonstrated that they are a modern, youthful, dynamic, capitalistic and vibrant country. I’m certainly aware of the publicized issues (I don’t believe it’s appropriate for me to discuss these items here) but at the level of working people and youth looking to the future, everyone I spoke to were incredibly optimistic, enthusiastic and international in their orientation. I would be thrilled to employ any of the dozens of young people I met last March. All were exceptionally friendly, spoke beautiful English, hustled, provided outstanding service, had great attitudes, and were optimistic about their futures and the future of their country. Many of these interactions were very moving and I hope to someday vacation in Russia to see more of the country.
Considering the above hoped for outcome, I can see why Russia is willing to invest so heavily in these games. Regarding that investment, what we saw from the airport to the ski area looked like a giant remodel of literally everything on an unrealistic deadline. Construction crews were working 24/7 on roads, trains, hotels, retail, pipes, utilities…you name it, it was being installed or erected. And like any remodel, decisions must be made on the fly and it appears that Russia generally chose to upgrade rather than cut corners. That said, the speed at which they are working did impact the finish work in many areas.
Next blog update: race results at Copper Mountain – which were not so hot.
Thanks all for reading this far.
First Update from the Road to the 2014 Paralympics in Sochi, Russia
January 11, 2014
As some of you know, I have continued competitive ski racing since the Vancouver Paralympics and will race in the 2014 Paralympic games in Sochi, Russia in 56 days (I am presently qualified in 4 of the 5 events but the team won’t be officially named until February). And so far this year, my guides (all three of them) and I are off to a remarkably strong start despite inconsistent skiing on my part.
This will likely be the longest of my blog entries but let me bring you up to speed on a few highlights and lowlights of the recent past before I get to the current races.
2010 Paralympics, Whistler, BC.
At least two and perhaps three people from my enormous fan base have asked to view the video of our Paralympic races, particularly the downhill where we finished second. These videos were not available for several years but please find the downhill at the link below. My run begins at 2:09:02 but I would suggest you start 30 seconds or so earlier and you’ll see a pattern amongst the visually impaired racers in the finish.
2010 Paralympic downhill: http://www.youtube.com/watch?v=9oR3NLO2krg. Our run begins at 2:09:02
I’ll try to find some of the other videos during the weeks ahead.
You know those crazy, fearless, believe they’re invulnerable, testosterone fueled youth that attempt astonishing stunts that have a high probability of failure and severe injury? The sort of stunts generally only taken by young men aged 15 to 25? Well, except for the testosterone fueled part, apparently I’m one of those knuckleheads.
Six years ago when I resumed ski racing, my goals were to 1) not get hurt, 2) finish races so we could climb the rankings and 3) win. Well, after having never been injured skiing, I began to feel bulletproof and forgot goal #1. I unfortunately pulled a quad muscle at a training camp in November 2012 that caused us to miss all but the last two races of that season in La Molina, Spain and Sochi, Russia (more on Sochi in an upcoming blog).
I was training at Mt. Hood on July 7, 2013 (as thousands of ski racers do every summer) when I made an awkward recovery to arrest a near fall. At first I thought I had only pulled a calf muscle and I skied off the hill hoping I would soon return to training. Below is a picture of the calf about 90 minutes after the injury.
Photos from a week or two later:
Unfortunately, the pulled calf muscle caused a blood clot (deep vein thrombosis) and an MRI revealed that I partially tore my MCL and moderately tore my medial meniscus. Fortunately, the doctors say I heal almost as fast as Wolverine and after 100 days of Coumadin/Warfarin, the blood clot cleared. Physical therapy greatly helped expedite healing and I was able to perform a limited amount of strength training prior to the season. Though I am not at my desired level of conditioning, my conditioning is actually pretty good and is only a small detriment to my performance. The bigger conditioning concerns are that I am not in a good position to withstand injury and I usually need all of the King’s men (PTs) to put me back together again after a long series of races.
Panorama, British Columbia, November 2013
With US Paralympic Team coach and NCAA GS Champion Sean ‘Rammer’ Ramsden as my temporary guide, we won two Super-G’s. Though we came in second in the GS and the Super-combined, we lost by a significant amount and I need to improve my GS and SL skiing pronto if I am going to be competitive in those events.
Here are some coaches videos from these races should you be interested (let me know if you can’t view and I’ll move the video to Youtube):
First Super-G: https://sprongo.com/video/968357
Second Super G: https://sprongo.com/video/971369
First run of GS: https://sprongo.com/video/973631
Second run of GS: https://sprongo.com/video/973491
Copper Mountain, Colorado, second week of December.
Skied with my regular guide Slater Storey and we won both Super-Gs and both GSs against a good field of international competitors. We were wrongly disqualified from a slalom race in which we finished second and finished third in the other slalom race.
Here are some coaches videos of these races:
First run Super G: Lower portion of course: https://sprongo.com/video/997964
First run, first GS: upper portion of course: https://sprongo.com/video/1002768.
Second run, second GS: https://sprongo.com/video/1008148
First run slalom: https://sprongo.com/video/1014437
Second run slalom: https://sprongo.com/video/1014721
We started our World Cup races – the highest level of racing in our sport – this weekend in Panorama, British Columbia and I’ll provide an update on these races soon.
I will try to post races results and other short updates to Twitter and Facebook and eventually to my website should you be interested. At the risk of looking a little ego centric, my addresses follow:
One in four thousand people inherit or otherwise become afflicted with Retinitis Pigmentosa (RP). I was diagnosed with RP in 1986 and have had all the traditional symptoms since childhood. Below is info on Retinitis Pigmenta from the Foundation Fighting Blindness (www.blindness.org).
What is retinitis pigmentosa?
Retinitis pigmentosa (RP) refers to a group of inherited diseases causing retinal degeneration. The cell-rich retina lines the back inside wall of the eye. It is responsible for capturing images from the visual field. People with RP experience a gradual decline in their vision because photoreceptor cells (rods and cones) die. Forms of RP and related diseases include Usher syndrome, Leber’s congenital amaurosis, rod-cone disease, Bardet-Biedl syndrome, and Refsum disease, among others.
As seen by a person with retinitis pigmentosa
What are the symptoms?
Symptoms depend on whether rods or cones are initially involved. In most forms of RP, rods are affected first. Because rods are concentrated in the outer portions of the retina and are triggered by dim light, their degeneration affects peripheral and night vision. When the more centrally located cones - responsible for color and sharp central vision - become involved, the loss is in color perception and central vision.
Night blindness is one of the earliest and most frequent symptoms of RP. People with mainly cone degeneration, however, first experience decreased central vision and ability to discriminate color.
RP is typically diagnosed in adolescents and young adults. It is a progressive disorder. The rate of progression and degree of visual loss varies from person to person. Most people with RP are legally blind by age 40, with a central visual field of less than 20 degrees in diameter. It is a genetic disorder and, therefore, is almost always inherited.
How is RP inherited?
An estimated 100,000 people in the U.S. have RP, mainly caused by mutated genes inherited from one or both parents. Mutated genes give the wrong instructions to photoreceptor cells, telling them to make an incorrect protein, or too little or too much protein. (Cells need the proper amount of particular proteins in order to function properly.) Many different gene mutations exist in RP. In Usher syndrome, for example, at least 14 disease-causing genes have been identified.
Genetic mutations can be passed from parent to offspring through one of three genetic inheritance patterns - autosomal recessive, autosomal dominant, or X-linked. In autosomal recessive RP, parents who carry the gene but have no symptoms themselves could have some children who are affected and others who are not. Similarly, in autosomal dominant RP, an affected parent could have affected and unaffected children. In families with X-linked RP, only males are affected; females carry the genetic trait but do not experience serious vision loss.
If a family member is diagnosed with RP, it is strongly advised that other members of the family also have an eye exam by a physician who is specially trained to detect and treat retinal degenerative disorders. Discussing inheritance patterns and family planning with a genetic counselor can also be useful.
What treatments are available?
The Foundation Fighting Blindness (FFB) has funded many important RP research and clinical advances. A nutritional therapy using vitamin A and docosahexaenoic acid (DHA) has emerged as an effective treatment for many patients; gene therapies are progressing through preclinical trials; technologies for delivering therapeutic agents to rod and cone cells are being studied in Phase II/lll clinical studies; an implantable microchip to enhance retinal function is under development.
Although not a treatment for RP, it is also important to know that low vision aids are useful for maintaining independence. Low vision specialists can make personalized recommendations for mechanical, optical, electronic, and computer-based low vision products.
What testing is available?
Genetic testing is available for RP. It helps assess the risk of passing the disorder from parent to offspring. It also helps with attaining an accurate diagnosis. A patient with an accurate diagnosis is in a better position to keep track of new findings, research developments, and treatment approaches. However, not all RP-causing genes have been discovered. If a person chooses to get genetically tested, there is about a 50 percent chance that their disease-causing gene will be identified.
Are there any other related diseases?
Other inherited diseases share some of the clinical symptoms of RP. The most common is Usher syndrome, where hearing and vision are both affected. Other related syndromes being studied through FFB funding include Best disease, choroideremia, gyrate-atrophy, and Stargardt disease.