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Never knew what I had till today
Hi,
My name is Duane and I'm 60 years old, but until today, I never knew what my condition was called.
My daughter e-mailed the article in people magazine and told me I might be interested in it. I don't even know what unilateral or bilateral means. Since both my legs are the same, I guess I'm bilateral. I also don't know what the Aitken classification means.
I'm at work now, and can't really spend much time telling you about me. Just a short synopsis about myself: I was born and still live here in Iowa. When I was first born, the University Hospitals in Iowa City put leg braces on me from the waist down. My parents & the doctors eventually realized that the braces were doing me no good, and took them off and let me do what I could.
I soon learned how to walk and play with the rest of my piers. I went to school as any other normal kid did. There were very few times that I recall ever being teased about my size. When I was a sophomore in high-school, some doctor decided I needed to go to Mary Freebed Hospital in Grand Rapids, Michigan. They fitted me with artificial legs ( stilts) that laced from the top of my thigh down to the tip of my feet.
I was there for three months trying to walk in them. I never considered my self handicapped until they put those stilts on me. I could barely walk, and sitting down was even harder. The day I graduated from high school, I took them off and threw them in the dumpster.
I got married at 29 and we have one daughter, who is perfectly normal. I have worked since I've was 20 years old, and still work.
I walked everywhere until around 1980. Since then, and now, I use a scooter 99% of the time. I can still walk for a small distance.
We have been married for 31 years. We have a home in Waterloo and a summer home on the Mississippi river. I drive two vans that have been modified, and also drive a pontoon boat that has been modified to allow me to drive from my scooter.
I have been living with this condition for 60 years now, and think I live a very useful and fulfilling life. I wouldn't trade the way my life has turned out for anything. I personally think people with disabilities have a greater impact on the lives of others more than others have an impact on us.
[Editor: I've uploaded the magazine article here ]
| Attachment | Size |
|---|---|
 people_magazine.pdf | 2.79 MB |
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newly discovered pffd
Hi Duane,
I've just read your post with interest, it must be strange to be able to put a name to what you have after all these years.
The Aitken classification is a scale of severity, A, B, C or D. A, least severe to D, most severe.
I'm in the UK and the Aitken classification wasn't used for me so i don't know what i am, i'd guess at B or C, though i'm no Doc.
I was born with bilateral pffd as well, also missing half my left arm. I have vague memories of similar artificial legs, big leather sockets with laces down the front, it took us quite a while to get ready in a morning with my mum tying my laces up! They got better after those, but stilts is a great way to describe them, it's exactly what they were, make me taller, nearer to my peers. I could walk and run around fine on my own legs, like you said about not feeling handicapped till using them, i was far more comfortable and quicker without them.
I've been a right side amputee since 9, and stopped using legs altogether at 12 i took to my chariot, so the last 20 years on my wheels.
Nice to read your story sir. Bye for now, and you take care.
Dave Bailey
pffd
Dave,
I was also born with no left arm, and only four toes on each foot. I also was given an artificial left arm when I got my stilt legs, but
through that in the dumpster also when I graduated. I could already do things better with my one good right arm. My arm and stilt legs were very hot and uncomfortable. I will take comfort over trying to look normal any day.
your arm
Hey Duane,
That is a coincidence. Do you have any left arm at all? I've got half mine, to elbow level. If i hear anyone say i've only got one arm, i correct them and say, one & a half actually!! :) that half makes a big difference. For that matter i also say one & a half legs actually if anyone says you only got one leg. My leg stump may be short, but it's half the leg that i had!
It was funny when i was in traction after i had my left amputated at 9. My stump was so short that a few times my stump bandage well off, clash bang wallop, there goes David's weights again. In the end my stump bandage ended up going around my waist too, that sorted the problem! :)
I have 5 toes on my left leg, though the outside 2 are totally fused but with seperate nails and i only had 3 toes on my longer departed right foot.
Do you have dimple/indents on each shin, about an inch or so long???
If yes this means you have Fibula Hemimelia, in non-medical lingo that means your probably missing part or all of your Fibias, the thin bone in your lower leg. I've never a definite reason for this little outward feature. I've read on here of some with pffd have these dimples/indent on their hips as well, not sure what that signifies.
I do sometimes miss my legs and electric arm, i felt like the Six Million Dollar Man!!! and wonder what it would be like to use all that stuff as an adult? Though i'd have to agree with your sentiment of comfort over trying to look normal.
Take it easy Duane.
Dave Bailey
Arm
Hi Dave,
Actually I have no left arm at all, it's just smooth skin where my arm would be. I don't have any dimple/indents on my shins either.
I have no thigh bones at all, and my knees are about waist high. If you want, give me your e-mail and I'll shoot you over a few pictures
of me
Reply to Duane:
Hi-
I am Jenny, Lilly Stiernagle's mom. She was one of the children in the People magazine you saw. I am so happy to hear that you read it and discovered a name for this condition. We live in southern Minnesota...Easton to be exact. I think from Waterloo to us is about 2 1/2 hours only. I would love to keep in touch with you and your family and learn more about you and share more about Lilly with you. Our home number is 507-787-2259 and email is jennystiernagle@hotmail.com
Hope to hear from you and welcome to the site!
-The Stiernagle's
article
I don't get people magazine. Can you email me the article? I would love to read it.
Thanks.
Beth Reinert
bethreinert@yahoo.com
People magazine article
Beth, I will send you the article. Let me know if you
get it.
Duane
pffd article
Beth e-mailed me a copy (too large for her account and I've uploaded it) - see the top of the thread for the link.
Cheers,
rar
People Magazine article
Beth, I didn't see my reply to your post. I did send you the article. Let me know if you got it.
Duane
article
I got it. Thanks!
i think i found out that is what i have also
Hi Duane,
My name is Sara. I am almost 27 years old. I read the article in the People Mag also. My doctors never told me the name of my diagnois. I was very surprised to she that there are others like me. After reading that article it sounds alot like what i have. I still dont know for sure. I have never had any surgeries done. I am still able to walk without a wheelchair. I used one alot during school. My doctors wanted to do surgeries but my mom couldn't put me or her through the process. I have a 4 year old son. I had no issues during my pregnancy. I am glad to find this web site to talk to others. Hope to talk to you more.