Resources for Amputees
Their families and friends.
In August of 1993 I was involved in a horrific life changing accident when I was hit by a police motorcycle, an accident that resulted in the amputation of my left leg below the knee. I also punctured my lung, split my head open and crushed my pelvis. Ironically I had been working with amputees in the then Yugoslavian war, little did I know that a short trip back to London would lead to me also becoming an amputee.
It’s been over two decades since my accident and looking back now I realise that during this period I saw this dark time in my life as a painful but new beginning. A painful beginning that was set to challenge me as nothing else had in my lifetime. It was to become a fascinating journey of self discovery. A journey that would lead me to discover the benefits of Veganism. I carried out lots of my own research and found that there were very few resources to help amputees for want of a better phrase “Get back on their feet”. There was virtually nothing to help their families and friends understand and prepare them for the journey their loved ones would be undertaking.
This really bothered me, I struggled to find the help and resources I needed, all I wanted to do was get back to normal and not let this new-found disability hold me back! My accident on August 8th 1993 was highly publicised by the media. I was contacted by many amputees who needed help overcoming their loss of a limb or limbs.
Driven by a natural desire to help, I went out and met with as many fellow amputees as I could, just being able to speak with someone else who understands what you're going through is priceless. The stories, the laughter and the optimism we shared was so inspirational. From terrorist atrocities to earthquake disasters, landmine explosions to diabetes and cancer causing limb loss. I listened and counselled as many as possible on the premise that they would then go on to counsel future survivors of limb loss.
A SPECIAL THANK YOU
"The Amputee forum wouldn't be what it is today with out the dedication and support it receives from the moderating team. I’d like to thank you all for the time, effort and love you put into the forum: JohnnyV, Higgy, Jane K, Neal and Cherylm. I’d also like to thank Jeff and his team at Infotech who provide the technical expertise and hosting of the forum website."
After years of counselling so many I came up with an idea to have a forum. The internet was becoming increasingly popular and created an easier access for people who were at time homebound. In 2006 I founded ‘The Amputee Forum’. It has now become one of the most established and active forums supporting amputees and their families. It’s a place for sound advice whenever they need it, from people who really know what it is like to live with limb loss.
There are over 70,000 posts and 1,500 registered members all of which share their stories, and provide vast amounts of information and help. I’ve even picked up a few tips along the way myself. To get yourself registered so you can chat with other amputees, swap tips and offer your support and advice, click here. Information sharing is one of the most important areas of this site so please get involved and continue posting as it is your input that makes this resource one of the most valuable on the internet today for amputees.
You can all help each other, and isn't that what life is all about, making a difference rather than just thinking of oneself!
TIPS AND ADVICE FOR AMPUTEE'S, THEIR FAMILIES & FRIENDS
Massaging Your Residual Limb
The timing of the fitting of your first artificial limb depends on how quickly your residual limb heals after an amputation. To assist the healing process for you and your family and friends, ask them to massage your residual limb as soon as you can. This helps bring a fresh supply of blood to the area and encourages your limb to fight against any infection. Massage will also help relieve any pain you may have and can help reduce the swelling in addition to wearing a Juzo compression sock. It will also help to prepare your residual limb for your first fitting of a new prosthetic limb.
Importantly it will mentally prepare you and your family to feel comfortable with your cute little leg or arm :-)
Massage can be done with bandages on if necessary. Encourage your loved ones to massage you, it will help you all get used to the fact that the limb is missing and it's not the end of the world.
Don’t be surprised if you start to suffer from phantom pains this is where your nerve endings are still registering that you have your limb attached, and are trying to find a connection.
It can be very distressing to a new amputee, wanting to scratch your foot, arm or another part of your body that is not there. When this happens the best thing is to massage it with pressure. Your nerve endings will then gain the recognition they want and your phantom pains will subside. I found acupuncture really helped me as well as homeopathy.
You will also find that the weather plays a big part in how your residual limb responds to daily life. Over the years, many weather conditions have set off a series of random daily dilemmas for me. A switch from hot to cold weather, tropical and damp weather. Cabin altitude when flying or being near a lot of electrical equipment. You may experience in the region of your amputation, sudden shooting or stabbing pain. You could have aches, common to arthritis pain and swelling. The list is quite extensive. But don't be dismayed, in time things get better. Just be prepared.
PROSTHETIST
Find a prosthetist who is qualified and most importantly one who listens. Everyone is different so communication is vital to get what you want from your limb.
Give them a chance, if it's not right the first time don’t be afraid to go back and talk to them. Make sure you write down your questions and answers so you can refer to them when needed. Never put up with an uncomfortable limb and never ever give up and stick it in the cupboard accepting defeat.
I found a gentleman named Abdo Haidar from the London Prosthetic Centre. A state registered prosthetist specialising in upper and lower limb prosthetics with over 20 years of NHS and private experience. Abdo is the lead Consultant Prosthetist and clinical director at The London Prosthetic Centre, based in the first London only, private prosthetic facility offering custom made silicone on-site. I’ve spent a lot of time with Abdo and his team and you can read more about his formidable team.
Abdo is also a member of the Heather Mills Amputee Forum and is on hand to share his wealth and vast experience with fellow members.
In America you can check for qualified prosthetists on The American Board for Certification in Orthotics & Prosthetics website. In the UK, check out The Limbless Association.
DISCIPLINE, DIET & EXERCISE
Try not to be solely dependant on your physiotherapist. He or she may not always be available so it's important to be disciplined and do exercises each day at home in addition to seeing your physiotherapist.
Keeping a healthy and stable body weight is vital. Limb reduction due to sudden weight loss or gain will create socket problems, which may lead to discomfort, blistering, swelling and milia’s.
After I lost my leg the infection refused to clear up and I was facing the possibility of losing my knee. At this point I was determined to do anything and everything I could to overcome the infection.
A close friend who overcame breast cancer told me about the Hippocrates Institute in the USA. I flew over to see them and within 3 weeks my infection had healed up and I kept my knee. This was all due to the fact that Hippocrates had altered my diet radically and placed me on a plant-based diet.
This way of eating was very alien to me. Up until this point I was a northern lass having my meat and 2 veg a day, polished off with generally, sticky toffee pudding or chocolate mousse.
Scientific evidence has proven that a healthy plant-based diet can alleviate and prevent many medical conditions known to the human species and help fight infection from within. My recovery totally empowered to me to spread the word about veganism, so much so that I bought a small Vegan food company a decade later.
VBites, since then has become an award winning vegan, vegetarian food company providing alternatives to meat, fish and cheese.
VBites is now distributing to 24 countries worldwide, has a chain of cafes and is feeding 1,000’s of people healthy plant based alternatives everyday.
Holland and Barrett one of the top leading health food stores in the UK, have also seen the vision of VBites and are now incorporating VBites cafes within their stores across the UK.
It's not easy to switch from a diet of meat, dairy and fish overnight. With this in mind I wrote a quick guide “Get Healthy with Heather”. This will provide you with easy alternatives and an idea of how-to introduce plant-based foods into your every day cooking. You can download a free copy of "Get Healthy with Heather" by clicking here.
I've also written a cook book, LoveBites that shows you how to replicate an international array of your favourite dishes by using vegan ingredients.
Try to eat less junk food and add more fresh fruit and vegetables to your diet. Sugar is a big no-no; it feeds bacteria that can hinder your limb from healing when it has an infection. Use maple syrup or stevia as an alternative, it's much tastier and healthier.
Of course diet and exercise always go together. What you fuel your body with; your body will then use that as energy expenditure. So, the solution is very simple. Healthy input, healthy output.
Plus, no exercise means atrophy, the wastage and shrinking of body tissue to the amputated area. Try to get to your ideal weight for your health and stay there.
ALWAYS EXERCISE, a BMI chart helps.
Medical Insurance
A lot of people in the United States say that they are not covered by their medical insurance. Don't accept this without a fight. Ask your Doctor for a letter of medical necessity. When you have this letter the insurance company will have to justify why you can't have a limb.
Limb Patches
For sore patches on your limb it is highly recommended that you use Compeed blister plasters made by Coloplast.
Apply the plaster to dry clean skin. They should be left in place until they lift off on their own, even in the bath/shower. They have been a life changer for me, the difference between wearing and not wearing my prosthetic limb when I have been overdoing it. Compeed blister plasters are available from most UK chemists. In the USA look for Band Aid Blister Block Cushions.
If you have a patch on your limb that is leaving red marks from too much pressure, mark it with a pen when you remove the limb so that your prosthetist will know exactly where the socket needs adjusting. You can also mark the area with lipstick then put your leg back on and it will mark the inside of the socket to help find the precise aggravating area. If you do not mark it then you will not be able to tell them where the exact spot is and they may adjust the wrong area. Marking is especially important if you cannot wear the prosthetic limb to the clinic itself.
Ask your prosthetist about fitting you whilst standing up with the jig system. When you are wearing your prosthetic limb you will most likely be standing which will change the shape of your limb from the sitting position.
Limb care
Always take care of your limb. You should wash and dry your residual limb at least once per day, and use clean limb socks whenever you do this. You may need to do this more often if you are physically active.
Never use spirit or talc on your residual limb as this will act as an irritant when you wear your limb. You can use a moisture cream on your residual limb if you find it too dry. Do this at night when you're not wearing your limb otherwise you will find it may slip off, especially when wearing a silicone liner or silipos liner.
Wash the liner inside out daily to prevent bacteria causing milia. These are tiny spots of hardened material that can become painful and infected when wearing the limb, so good hygiene is vital.
Research
Be ready to find out information for yourself, you cannot rely on Doctors to inform you of everything, you will need to know and research yourself. Asking other amputees and doing your own research on the Internet is the best tool for this. You can find everything from limb components to support groups via the Internet. Here are a handful of really good sites to start you off: -
And of course our Amputee Forum. Why not bookmark these sites as they are constantly updated with technology changes.
Join all established support groups, it is very good to meet up with other amputees. They will have experienced similar problems to you. Listen to each other, this way you can find solutions to shared problems. If you feel you don’t have a problem maybe you can help someone who does.
Cutting down Limb socks
If you do not like the sight of the limb socks showing when you have your limb on, cut them down.
This is best done with the limb on, as you need to trim around the shape of the top of the limb. Get a family member or a friend to do it for you whilst standing or make a pen-line on the sock around the shape of the limb then take it off and cut it down. When your residual limb shrinks, and in between socket fittings, don’t add too many full length limb socks, cut some in half as the end of your limb is most likely to be the area that has reduced, not your knee area. This way you will have fewer problems squeezing your limb into the oversized socket.
Educating the ignorant
When I first lost my limb people would stare at me. It is usually because they are ignorant as to what has happened to you. Ignorance can breed fear. Talk to them and explain what happened to you. I find a sense of humour is vital. However with all the awareness we have raised and pushing for a decade to get the Paralympics televised, amputees have become super heroes, so most stares are now in fasciation with regard to how cool we robocops are ;-)
We all have a role of educating those less knowledgeable than us.
Set Yourself Goals
Be confident, think positively and set yourself some goals. They only need to be little ones to start with i.e. standing up with your new limb on. When you achieve one, set another. You will be surprised at how quickly you achieve those goals. Remember that it doesn’t matter how often you “fall down”, it’s how often "you get up" that counts.
Take me for example, the hospital psychiatrist told me not to set my goals too high. My first goal was to stand and walk, my dream was to dance as soon as I could, as I was never sure I could. As time evolved my confidence grew and so did my goals! I’m now skiing and have managed to set 5 World Records. One of them being the fastest disabled woman on the planet. Looking back I don't think the hospital psychiatrist could have ever dreamed I'd be able to achieve anything like this. What a great feeling it was to prove them wrong.
For the non-sporty amputees, set goals of things you dream to achieve, a new-found vigour and appreciation to life and how few finite minutes we have left should inspire you.
Good Luck, and remember there's a whole lot of blue sky out there!
Love
Inspirational books
PS… here are some Inspirational books I found really helpful on my journey: -
One Man’s Leg by Paul Martin.
One Step At a Time - A Young Woman's Struggle To Walk Again, by Lenor Madruga
Coping With Limb Loss, by Ellen Winchell, PhD
Up and Running: The Jami Goldman Story
No Mean Feet by Mark Inglis
Marathon Man by Steve Wilson
A victory for humanity by Dick Traum & Michael Celizic
Whole Again by Bill Barr & Lee Whipple
Diet for a New America by John Robbins
The China Study by T Colin Campbell
The Food Revolution by John Robbins
It's Just a Matter of Balance by Kevin S Garrison
And of course my own book, Heather Mills “A single step” which I hope you read and find motivational.