Part I: Everyday Life Strategies
Who am I to be writing this?
I lost my right leg when I was 16 from osteosarcoma. I ended up with a very short stump. The cancer re-occurred when I was 19 causing me to lose 2/5 of my lungs when the cancer metastasized but chemotherapy worked and I have been free and clear since then. Now I am 51 years old. I have had many different prostheses. Over the years I got to experience first hand how the technology has advanced. My first leg, back in 1973, was made out of balsa wood, had a very primitive knee, a rubber foot, and it used a suction pull-on sock suspension. Now I have a microprocessor controlled knee, a carbon fiber spring foot, and a snug silicone liner with a pin in the end which is held by a ratchet mechanism in the socket. I am very active and have adapted to many sports including several that are quite extreme. In my professional life I got a PhD in computer science, taught at the university level for a while, wrote two successful technical books, became an entrepreneur and have started 6 high tech software companies two of which I managed to sell for over $100M each. My 35 years of living as an amputee, traveling a lot for business, and being very active and competitive in sports, has given me experience with what works and what doesn’t. Included in this article are the things I wish someone had told me at each stage as I tried something new. They are not “right” or “wrong” -- they are just what worked for me so maybe, just maybe, they will be useful to you. Use the ones that work for you and ignore the ones that don’t. My hope is that in here are some helpful strategies for you or someone you know.
Look for my forthcoming book in 2009 called A Leg Up: An Inspirational Journey from Amputee to Entrepreneur.
First I want to address some issues I still remember well from when I was first faced with my amputation.
It is frustrating but when first missing a leg it is incredibly difficult to stand up and balance. Don’t worry this will come naturally. At first, your body and brain are playing tricks on each other. Your brain is telling your missing leg to shift as your balance mechanism in your inner ear tells your brain you are lilting to one side. But that leg can’t do what it is told as it is not there and the muscles in your good leg are doing exactly the opposite of what they need to do to right you back up and so you continue to lean and lose your balance. This is the time to be persistent and not get frustrated as your body will naturally adapt and you will regain your balance. Be patient with yourself.
Amputees have lost a significant portion of their body mass and in particular, they have lost some very large muscles. You are no longer symmetrical or “balanced” and this puts a significant burden on the remaining limbs and back to compensate. For this reason it is critical that you get in shape and remain that way. This won’t happen overnight. A certain amount of body adaptation will just occur naturally as the body tries to adapt to the increased demand on the remaining body parts just as a blind person gains heightened senses of hearing and touch. But you must go beyond the natural adaptation and work on strength and flexibility of the remaining limbs and core. Go to the gym or take up a good overall body form of exercise like swimming. It is especially critical to keep your back strong and flexible to avoid strains from the prosthesis.
Whether you are a person who rarely or frequently leaves the prosthesis behind, you will undoubtably use crutches to some extent. Full arm crutches are my personal preference so I can carry things by squeezing the crutch pad hard between arm and my side (don’t let it get up and ride in your armpit or it will numb an important nerve). For people who like to walk or hike longer distances, I strongly recommend Keen Navigators because they put the hand grips out from the body in a more natural place and have shock absorbers in the shaft that give your shoulders a real break from the pounding of walking on crutches. Find them at www.awardprosthetics.com.
Lots has been written -- much if it in this magazine -- about phantom pain and I cannot add a lot to that, especially with respect to the science behind the phenomenon. All I can add is what my personal experience has been. I am, unfortunately, one of those plagued with almost constant low-level phantom pain as well as occasionally (once per month or so) very intense “electric shock” level of pain. For me standard fare is to take Ibuprofen at night and when it gets really bad to take Anaprox and to put pressure on the stump either by putting my leg on or just to wrap the stump in an ace bandage and lie in bed on that side of my body. Whenever I have a fever I get the huge electric shock level of pain so managing fever is vital.
As a 16-year old new amputee and for many years after, I was very conscious of my body image and did not like to be out in public without my prosthesis. I always did hate being stared at and I can’t say I ever got comfortable with it (except when I was performing well at a sport). If you get good at a sport that you do without your leg on, you will find yourself getting more and more comfortable being around two-leggers and the random staring. You need to remind yourself, they are now staring at you because you are impressing them. Maybe you are even doing the sport better than they can! But even when not doing a sport, I hope you can, over time get more and more comfortable being in public without your leg. For one thing, it is just good for your skin and your body to get a break from the leg. It took me 30 years but I finally can accept occasionally going to a movie or even a restaurant on crutches. Sightseeing was all but impossible with my leg on -- walking long distances around Paris or even Washington, DC was just too hard. It’s liberating to be able to choose leg or no leg.
I’m probably stubborn to a fault but I went many years refusing any help of any kind. I wouldn’t even let people open the door for me when I was on crutches. If you are stubborn like me, it will be much easier for you to accept help on some things if you are competent at other things. That is the nature of human beings not just amputees. We just get much more sensitive about our situation and don’t want to be considered “disabled”. I finally realized I cannot carry a case of wine down the basement stairs very easily so I stopped trying. But I can climb up mountains on crutches so I am ok with that tradeoff. And because sometimes we have our prosthesis on and sometimes we don’t, the people around us need to adapt that into their offers of help smoothly. Carrying two glasses of wine with my leg on is no big deal and I don’t need any offers of help but on crutches, someone else carrying them will reduce the risk of spills. Your family and friends will figure this out.
In this section I just have a couple of bits of experience in dealing with many many years and millions of steps in a prothesis. This is in no way a substitute for the expert advice of your prosthetist (but I know my prosthetist agrees with me).
The selection of your prosthetist is much more important than you might imagine. Why? First of all, for the rest of your life you will see your prosthetist much more than any of your doctors. Second, you can get the best microprocessor knee, the highest technology foot, and if you have a poorly fitting socket you will not walk well and you will be miserable. Its all about the socket and getting a good fit is not easy and takes a lot of skill. Some people think that the best prosthetists by definition have to be amputees themselves. Over 35 years I have had at least 6 different prosthetists and by far the best ever is the one I have had for the past 8 years (Arthur Graham of NextStep in Boston) and he is a two-legger. Your doctor may not know the best one around and it is perfectly accepted practice to interview prosthetists before you select the best one for you.
After many years of “abuse” in a hard plastic socket, and normal ageing, our skin gets less resilient. Remember that only our palms and our feet have the kind of skin that can form calluses so no matter how much you hope for it, your stump will never form them. You cannot let the skin break down. When it does, it heals but is forever less resilient. Stop wearing your leg if you get an abrasion. Cover it with a large band aid if you have to wear your leg more. I use band aids, Alps A&D ointment, and lubricants to deal with early breakdowns. At night I always treat that abused skin to moisture cream. I travel frequently for business so the long walks in the airport can get to me. Save your steps: use your handicapped placard, have people drop you off close to the building you are going to and don’t believe two-leggers when they tell you “oh its only 2 blocks” because they always underestimate about how far a walk it is.
For me, rounded heels on my shoes are vital and I constantly look for shoes that are nicely round not square at the heel. Even dress shoes can be found that are rounded. No two shoes are exactly the same geometry and there is a little adaptation in your gate each time you change shoes so if you can stick with just a few different pairs that is best. A brand that has great shoes all of which have rounded heels are Merrels. Its almost as if they designed them just for amputees.
Cane or no cane
If your back starts to hurt or tire frequently from walking in your prosthesis try walking with a cane for a while. Make sure its the right height so you don’t have to bend over to reach it. And don’t forget the cane has to go on your good side. You will see many people use the cane on the wrong side (like Dr. House in the TV show) where it will not help take the strain off your back.
With either a suction socket or a liner, ultimately our prostheses are held on by dry skin not sliding against a plastic surface. If the skin gets wet that adherence starts to weaken. So I have suspension problems when I sweat. That can happen on a long walk on a hot summer day or when I am working in the yard with my leg on doing heavy work. You have to be careful putting anti-perspirant on your stump before putting on your leg because it can make your stump more slippery so pick one that is plain and simple and has no greasy or powdery additives.
In this short section I have put a few things I have learned that I can only put into the category of things that affect daily life.
Besides the long walks in the prosthesis inherent in plane travel, another big issue is security. People that have not been through it are understandably intimidated about that scene. TSA has a set of rules specifically for amputees and finally all the agents seem to have been trained to deal well with us. Of course we set off the metal detector so you always have to be hand screened. As you approach the metal detector and they insist you take off your shoes just say “prosthesis” and shake your head and they will understand. During the hand screen process the TSA agent uses the back of his or her hand to pat everywhere the hand wand beeps no matter how high up your prosthesis goes. They will not have to see the top of your prosthesis so don’t worry that they will ask you to pull down your pants. They have to chemically test the prosthesis and your shoes for bomb residue so don’t be alarmed by them swabbing your lower leg (maybe up to the knee) with a special material. One thing you might try that I have found makes the process easier is to wear shorts. If they can see the prosthesis clearly they seem less suspicious and the entire process goes more smoothly.
Sewed up pants
When living without your prosthesis you will need “one-legged pants”. You might just tuck the empty pant leg inside the waistband but a more permanent and comfortable solution is to cut off that pant leg and sew it up.
￼For those of us that live in the northern climes, winter poses some special, and potentially very dangerous, challenges. Most important advice: get a traction device for your shoe(s) like Yak Trax such as seen here.
They are critical to keeping your good foot from slipping. If that foot stays put you are much safer. Also get some of these spikes for your crutches if you plan to go out on crutch walks when its icy. ￼
They are available from www.awardprosthetics.com/crutchtips.html. I was feeling thwarted from ever getting out when there was a deep snow until I finally figured out this snowshoe rig. ￼My prosthetist was able to construct these easily by welding a pair of child’s prosthetic feet to sturdy forearm crutches. Then I put children’s snow boots on those feet and they are fastened into children’s size snow shoes. On my real foot is a large adult size snow shoe. The arm rigs are heavy so your arms need to be pretty strong. It is so liberating to be able to join friends who are cross country skiing or snowshoeing. Now I can go deep into the woods even when there is a foot or more of fresh snow.