rar's blog

About our Prosthosis

rar — Tue, 22 Oct 2013 20:15:13 +0000

I created a page about Prosthoses here http://www.pffd.org/prosthosis.htm. Hope you find it useful.

Riding a Bike

rar — Sun, 31 Aug 2008 18:47:34 +0000

I thought you'd like to see a video of my daughter riding her bike. We use an "extension prosthesis" - what some call an "prosthosis" or a "Moseley-type device." The ankle is hinged and it allows nearly full mobility which she uses when riding the bike. The small length of the pedal arm means that she can use her shorter femur to lever the pedal.

http://www.pffd.org/sites/pffd.org/pffd_files/r_pedal.avi

Attachment	Size
r_pedal.avi	3.21 MB
p1000372.mov	12.42 MB
p1000371.mov	18.81 MB

Website updated - now you can "attach" files with posts

rar — Wed, 16 Nov 2005 07:09:36 +0000

I've added a module that allows members to upload images and documents as attachments to posts. Now when you go to create a post (Create Content, Blog Post) you will see at the bottom of the page a section called "attachments." There is a two meg limit on the size of all files and all images are limited to 640x480 in pixel dimentions. If that's not enough let me know.

I may also (if there is enough interest and I get a few seconds of time) add some more functionality that displays thumbnails of images in the posts as well.

I will be using this to post a document that shows some of the prosthesis our daughter has used over time - ones that worked and ones that did not - as soon as I edit it a bit more.

Intersting Article about a person with PFFD in an Ironman competition

rar — Sun, 27 Feb 2005 06:30:35 +0000

From
http://www.transitiontimes.com/viewstory.cfm?ID=6626

The text is below also:

Title: Sarah Reinertsen: Don’t Give Up… Not Once…Not Ever
By Steve Brown - Editor, TransitionTimes.com

Millions of people tuned in to watch last year’s Kona telecast a couple of months ago. The coverage of this race is always epic and the quality production has many awards over the years. I, like many others, find myself riveted to the TV as I become fully enthralled in the many personal trials and tribulations that play out over the coveted Kona race course. In fact, these stories are ultimately what drove me to the ironman as an athlete.

This year was a little different for some reason. One of this year’s stories stood out above the rest for me. Sure, they were all motivating. And if I could choose who I would want to be stuck in a crisis with, give me Christian Sadowski, the guy who got hit by a motorcycle, carried his bike for 7 miles in socks and then ran the marathon. I want that guy in my foxhole. But one story grabbed my attention to the point where I had to do some investigative work and find out more about a determined fountain of abundant hope and possibility known as Sarah Reinertsen. I’m not sure if it was the heartbreak of missing the bike cut off forcing her to end her race. Or the pure courage that it took to just get to the start. There was something about Sarah.

Sarah was born with a deformed leg resulting from a condition known as proximal femoral focal deficiency, or PFFD. She was forced to wear a brace to even her legs out from the age of 11 months until she was 7 years old. At that point, the decision was made to amputate the leg above the knee.

Because of her “difference”, Sarah was outcast in school and forced to play off to the side by herself in gym class. She was always chosen last or excluded completely. And although it hurt, this was slowly building the foundation of who she was to become.

When Sarah was 11 years old, she experienced an awakening when she competed in her first track meet against other challenged athletes. It was on this track that Sarah realized that not only could she be involved and race, she could win. And win often.

Since that time, Sarah has evolved into an amazing athlete and role model. Some of her accomplishments include many division world records in track which paved her way to a trip to Barcelona in 1992 as a member of the U.S. Paralympic Team. And she has also completely dominated the road racing circuit, racking up additional records in the half marathon and marathon. It wasn’t long before Sarah saw triathlon as her next challenge. So, Sarah saw and Sarah conquered.

Like others before her, Sarah soon heard the distant beckoning call of the Queen K. And she answered it. The next stop – “The Big Dance” - The 2004 Ironman Triathlon World Championship in Kona Hawaii. The brass ring of triathlons.

I had the pleasure of chatting with Sarah after her race at Kona. Her energy and enthusiasm radiated through the phone as did her smile. Here is what Sarah had to say about life, the ironman, and being “different”.

SB – Sarah, I can’t even tell you what a pleasure it is to be able to do this. You pulled on the heart strings of millions of people and your story is truly amazing. Can you just very briefly explain the circumstances surrounding the loss of your leg as a child?

SR – When I was born my left leg was shorter than my right leg – due to a tissue disorder known as proximal femoral focal deficiency. The doctors don’t really know why I was born that way, there’s no genetic history in my family of this. My mom was sick in her first trimester and took medication so there has been speculation that was the cause, but we still don’t really know. So growing up I would wear a brace to even the lengths of my legs so I could walk. Eventually, doctors recommended amputation of my left leg so that I could take advantage of better prosthetics. My leg was amputated above the knee when I was seven.

SB – It obviously ultimately made you stronger as an adult. But what did it mean to you as a child?

SR - Of course I did. There were times when it was really hard to be different from everyone in the whole school. When I was younger I felt a lot of self-doubt about ‘keeping up’ with the other kids – I hated gym class because I was always the last kid picked for the kickball teams. And as I got older I had self-doubt socially – fitting in, or meeting boys, – I went stag to my senior prom; I did have a tough time in that area.

SB – What pulled you through those periods?

SR – First, I have to give credit to my mom for helping me through those tough times. She has been an incredible source of love, support and encouragement. Second, I would have to say sports helped me through – it was an outlet for me to get my aggression and frustration out. I used to go to the track or the gym after school -- lifting weights or running helped me to get that frustration and aggression out. I just remember feeling strong and beautiful after a good workout. Sports helped me then, and it still does today.

SB – Was there one event or person that set your determination in motion, or is that something you always had as a child?

SR - I think I have learned about strength and determination from lots of different people, in different ways. I learned a lot from my family – but I also had some great role models and coaches. The man who taught me how to run is a physical therapist in NYC, David Balsley, and he really instilled that tough attitude in me. He never took excuses and believed anything was possible. He had trained other amputees to do marathons in the 1980s, and he was an ultra-marathoner himself. He raced in Western States and other 50-100 mile trail runs, he’s a really strong athlete, and he helped make me the athlete I am today (he helped build the foundation) and taught me to push my limits.

SB - When did the multisport bug first hit you? And tell us a little about “the beginning”, and your progression.

SR – When I got into triathlon, Ironman was always the long term goal, but just like marathons usually begin with a 5k, in triathlon you start with a sprint triathlon. My first race was the Carlsbad Triathlon – ½ mile ocean swim, 15 mile bike and 3 mile run.

SB – I know “why” is usually an impossible question to answer when it comes to this race, but I’ll ask anyway. Why the ironman? And of all ironman races, why Kona?

SR – I had been thinking about doing the Ironman for years, and there were so many friends that I knew that had done the Hawaii race – some of them were guys I knew that used to get their artificial legs made at the same place I did.

SB – I understand that biking was new to you until making the Kona commitment. Is this true? And how did you overcome that hurdle?

SR – I pretty much learned how to ride a bike in May of 2003 – so yes, biking was new to me. My parents had given me a bike when I was 11 years old, and I hated it, it was hard for me to balance and I was so frustrated because I couldn’t keep up with the other kids, so I parked the bike in our garage 2 weeks after I got it and never got on a bike again until I was 28 years old. I was basically learning how to ride a bike a month before my first triathlon.

SB – What coaches worked with you?

SR – I recently started working with Paul Huddle and Roch Frey from Multisports.com. I actually started working with Roch when I first moved to San Diego, went to his master’s swim classes and he helped me tremendously. I worked with other coaches last year, but decided to make the switch because they are local to southern California and well because they are the best. They have years of experience and have gotten so many newbies across the finish line at Kona. I knew they were the guys to call to get me across that Ironman line in 2005.

SB – The most emotional part of your story in Kona was the fact that you missed the bike cut off and was forced to drop out of the race. Tell us what this meant to you at the time, and how you’ll use it to propel you to the finish line the next time.

SR – I was devastated about not making the bike cut off. You know going into an Ironman race that anything can happen out there… but you never really imagine not finishing. It’s just not an option. I had trained for months, gotten up early all those mornings for that one moment when you cross the finish line on Alii Drive to hear Mike Reilly say, “You are an Ironman.” I couldn’t believe I didn’t make it.

SB – Do you have one special place that you go to mentally & emotionally when you need to dig deeper? A special memory or thought? etc.

SR - There is a special race that I think about when I need to dig deep – it was the Millennium Marathon in New Zealand in 2000.

SB – Tell us a little bit about your personal support team.

SR – There are a few people I rely on tremendously – of course my family is number one. Then I would have to say a BIG thanks to Erik Schaffer, he’s the prosthetist that makes my legs at A Step Ahead Prosthetics in New York (I live in California and still fly back there to get my prosthetics made because he is THE best! www.astepaheadonline.com). I also get support from Ossur (www.ossur.com) which is the company that manufacturers the prosthetic feet, knees and liners I use (Ossur gives Erik the parts, and he custom makes the socket and puts it all together). Truly, I wouldn’t be able to attempt something like the Ironman without the prosthetic technology. Then there’s my coaches and my sponsors – I couldn’t do it without them.

SB – What can we expect from you in 2005?

SR – I’m hoping to go back to Kona to finish what I started…

SB – I understand you are also mentoring other challenged athletes. Tell us about that.

SR - Yes, the Challenged Athletes Foundation has a mentorship program called “Catch a Rising Star” – and I am mentoring a few girls who are also amputees. Some live in California others live in Midwest and New York. I would not be the athlete I am today if it wasn’t for a mentor I had back in NY – here name is Paddy Rossbach, and she’s an amputee marathoner I met back in the 80s. So I know how important it is to have role models and someone there to encourage you and give you insight on prosthetics, training, etc. So it’s part of my mission to give back to the sport by helping the next generation of amputee athletes.

SB – Would you like to thank or mention anyone?

SR - The Challenged Athletes Foundation has helped me tremendously, Tabi King, Virginia Tinley, Bob Babbitt and the whole CAF family has been an incredible emotional and financial supporter of my triathlon pursuits.

And that ended my conversation with Sarah Reinertsen. We can expect big things from Sarah in 2005 as she looks ahead to a busy season of racing while balancing all of the other elements of “real life”. Sarah is keeping quite busy settling in to a new home, adjusting to a new job, teaching SPINNING classes, and training. But cutting through the chaos of Sarah’s busy schedule is the driving and motivating echo of Mike Reilly’s voice ringing in her head, “Sarah Reinertsen…..YOU ARE AN IRONMAN”.

Different type of prosthesis - success!

rar — Sun, 24 Oct 2004 16:59:00 +0000

We tried the first prosthesis for a while (see first blog entry) - it was a failure. It caused bruising, it overheated her, it didn't breathe, etc. I could go on for days about all of its deficits. We were always upbeat about the prosthesis in front of her when we put it on her, but her reality over-took our spin. After a while she cried when she saw it. We got it adjusted a few times for a few months. One time we went in for an adjustment we met with a different prostheticist. We asked about other designs. He designed an extra-lightweight shoe lift that straps on to a regular shoe with velcro.

Success. The design is simple and excellent. She loves it. She now asks to have it put on. She's had it for over 6 months now (she's 18 months) and and runs, climbs stairs, kicks, bounces, etc.

Update: See http://www.pffd.org/node/160 for a review of our prosthesis.

Got a new prosthesis

rar — Sun, 04 Apr 2004 22:12:59 +0000

Our daughter got her first prosthesis. It became obvious though that the person who designed this one was thinking of people who have amputations - not with people who have fully functional ankles/knees. This prosthesis, the prostheticist said, was desgined to remove weight off of the foot and transfer it to the skin/hip. Her first imaging showed a potential Class C Aitkins with a complete foot, ankle, and no hemimelia of the tibia - so we were a bit perplexed - but he said that's what is supposed to happen.

Alternatives to Illiazarov and Prostheses in the Treatment of PFFD?

rar — Fri, 12 Dec 2003 18:37:00 +0000

My grandmother sent me an article in the New York Times which had some interesting new technologies. Both are designed with cancer patients in mind but I think they might benefit PFFD patients as well.

The first is a lattice made of biodegradable polymers infused with cells that have the capacity to turn into bone cells. Over time the scaffold degrades and is replaced by the patients own bone cells. Much of the research on it appears to be done at Rice University and the surgeries at Texas Medical Center. Some good web links are a general audience level lecture , some MIT class notes and a chemical engineering peer-reviewed article.

One word of warning. Although this sounds promising, there are solvents and/or catalysts in the polymer that (to put it kindly) may have long term toxic affects that are unknown. Remember these scaffolds are designed to degrade and be absorbed by the body. So this may be good for adults who have to have a tumor removed. What about children?

The second is a metal replacement bone that has inside of it a magnet that is attached
to a worm-gear. Then instead of using pins and a cage to stretch out the leg, the patient is put in a rotating magnetic field that spins the magnet and streatches out the new bone. The first surgery was done at the end of 2003 in England. One article about it is here

Our Daughter April 2003

rar — Mon, 22 Sep 2003 00:57:00 +0000

Our daughter was born 5 months ago with PFFD in one leg (unilateral PFFD) as a class C or D Aitkens.

We had known ahead of time that she would be born with PFFD becuase we had discovered it during a routine ultrasound. The doctor who made the announcement was very discouraging, but that night we discovered the PFFD VSG as setup by Mike Malloy. It was more wonderful than words can describe. The stories there were uplifting, the people we contacted were very encouraging, and the information better than anything else we found. When our daughter was born we welcomed her into our lives fully with love, joy, and our hearts at ease.

But we wanted a bit more from the original site. One issue was that in order to be a participant in the PFFD VSG community we would have to post e-mail addresses (or other contact information) that were visible to people beyond the PFFD community.

I contacted Mike about possibly setting up a community site for the PFFD VSG - something with forums, private messages, and the ability for people to add and modify their own pages. He agreed and this site is the end product of that conversation.

In the near future we will be setting up a database that allows people to enter their experiences, similar to what has been done for other medical community sites so that we can get an "in-the-field" estimate of what treatments people have used and are happy with. If you have any suggestions - please send them, or sign up and add something to the pages.

Cheers,
rar