I have been an amputee (LBK) for 5 years. During this time I have learned so many tips and tricks along the way. Here is a list of what I have found to be most helpful. My key take away though is that not everything works for everyone, just like living, parenting and learning. Please give everything a good shot, lots of trial and error – basically keep throwing shit at the wall and see what sticks!
Tangible Things
- Shower chair
- Shower head with handheld shower attachment
- Grab bars near toilet and shower
- Railings with extra supports near stairs
- Walker with basket
- Knee Scooter with basket (I still use at night or on no leg days around the house)
- Electric Wheelchairs provided in stores
- Reusable icepacks
- Single point cane
- Trekking poles
- Other:
- Remove rugs (until really stable on prosthesis)
- Move things lower in your home so you can reach easily
- These things are tools to help you gain strength, build stamina, learn balance and keep you safe. Use them so you CAN live a full life. I still use these tools 5 years out when I am sick, sore, having a hard day.
Cramps, Muscle Spasms, Nerve Pain, Phantom Pain
- Water, Water, Water – you need to be more hydrated than before your amputation.
- Increase electrolyte intake – pickle juice is great in a pinch!
- Light daily stretching
- Magnesium lotion
- Foam rolling a couple of times a week
- 8 hours of sleep a night
- Limb massage – hands or spiky massage ball
- Limb desensitization
- tapping limb with fingers or finger nails
- touching limb to carpet, grass, etc
- brushing limb with hairbrush or comb
Prosthetists
- Advocate for yourself. If a prosthetist is not working for you, it is okay to switch! They are a business offering a service. I prefer locations that offer in-house fabrication as the production time is less due to skipping the mailing of the socket. Sometimes it is work driving a little further to gain this benefit.
- Interview a couple different prosthetists if you can. They will all have different personalities and we match with different people.
- Communicate your goals! Be upfront about what your short-term and long-term goals are. Here are some examples. Make sure to share your goals with your PT and Prosthetist so they can help set mini goals and give you exercises to get there.
- Making dinner without using a walker
- Walking upstairs unassisted
- Walking on grass with only a cane
- Grocery shopping while pushing the cart
- Running a 5k
- Biking 20 miles
- Hiking in Yellowstone National Park
- Indoor rock climbing
- While getting a socket made please be patient and understand it will take time and modifications. Your newly amputated limb will need to get used to being weight bearing.
- Many times it will start off uncomfortable which is okay, but you should not be in pain. Navigating the fine line between the two is a learning curve.
- It might take a day or two to settle into a socket before really knowing what adjustments need to be made. Sometimes an alignment adjustment is needed and not a socket modification.
Unsolicited Advice
- Set small daily goals rather than big ones like I will walk unassisted by x. These goals can be unloading the dishwasher, check the mail, complete physical therapy exercises. No goal is too small.
- Pay attention to how your limb feels. Be diligent about adding or removing socks. Watch for irritations and sores.
- Wash your limb every night! This removes germs, bacteria and dead skin cells. It is also a great time to do a skin check.
- Recognize that you will always have a deficit and struggles. Your struggles as an amputee will be different from what you struggle with now, but it won’t make them any less challenging.
- Allow yourself to be mad, yell, cry, whatever – then set it aside and finish your day.
- Focus on what you can do, no matter how small rather than what you can’t.
- Expect that you will fall – hopefully not until you are fully healed! It will happen and you will be okay, just take a moment to breathe then get back up.
- Therapy can help process your emotions – there will be a lot. This is another tool to use while you need it. Journaling is a great alternative if insurance and budget constraints exist.
- Remember that everyone’s body heals differently due to age, weight, health issues. This is not something you can rush and patience is NOT EASY. There are some amputees that aren’t in their first prosthesis until a year after surgery while others are a few months. Your journey won’t look like anyone else’s and that is okay.
- Start redefining yourself today – before the surgery if you are lucky enough to have it scheduled. Look at who you are and who you can be now and will be in the future. Your past self is no longer you and that is hard.
- Find hobbies and things you enjoy that don’t involve walking/standing, learn something new. There is always a possibility you can eventually do things you used to enjoy or close to it. This will take time, sometimes a year or two after surgery before it is even a possibility. Those hobbies may involve modifications. For example, if you used to hunt maybe you will need someone to help drag the deer out in the future or only go turkey hunting.
- Attitude and personality are a huge predictor of quality of life -after a life changing event, such as amputation. The amount of drive that a person has, the tenacity and persistence mentally to keep trying and not give up is so important.
- Be wary of virtual amputee groups! Medical advice should come from a professional. Most people who are in amputee groups on Facebook are looking for a place to vent or complain. Amputees that are out living their best lives, experiencing lives are generally doing just that and not active in those groups. This can paint a negative picture and get you in a negative thought spiral.
- The amputee coalition can connect you with another amputee with a similar situation to talk if that interests you. Your prosthetist can help connect you with someone too!
- After recovery it can be nice to have community. Wiggle Your Toes is an organization that hosts mobility clinics. Participants range from kids to 86 years old as of now. They offer free events that focus on moving: walking, running, tennis, wake-boarding, etc.
- Utilize like grocery pickup or order pickup where the store employee brings purchases to your car.
- Take advantage of electric wheelchairs in stores so you can save your energy for other things.
- To start preparing now work on your core strength because this is where most of your balance will come from. Ottobock has a free amputee fitness app you can download.
- Smile at kids who stare. If they ask what happened tell them x body part didn’t work so you now have a robot arm/leg. It normalizes it for you and them, which creates a learning culture that takes away fear of disabilities. It will also help ease the tension of an embarrassed parent and model how to talk about differences in a positive light.
- I always let them know that I was lucky to get a robot leg so I didn’t have to live like a little old lady with my leg that didn’t work anymore. Now I can bike, swim and play just like them.
- It is okay to ask for help!
- Remember to laugh at yourself 🙂 a good sense of humor goes a long way!
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