No matter the cause or the decision that led to the beginning of your limb loss journey, you are not alone and there are resources available at your fingertips. In most cases, your care team will have provided information on local support groups, virtual resource pages, brochures on finding support, or a general FAQ to get you started. If you’re not sure where to begin, Amputee Coalition of America and the National Limb Loss Resource Center are just a couple of resources that offer a great network of other limb loss community members you can contact in your local area, or virtually.
Understanding Your Journey
The process of beginning your limb loss journey can be overwhelming and can cause feelings of uncertainty or fear. Not only are you undergoing physical changes, you will also face an emotional journey that can be just as taxing on your mental and physical wellbeing. Your care team will be able to answer any questions you may have and help ease you into each stage of your limb loss journey.
When you first begin your journey, ask questions any time an opportunity presents itself. If you are uncertain about what comes next, your care team will get you an answer. If you are still having trouble understanding, keep asking questions until you are certain about the answer.
It may sound like a no-brainer but knowing your personal medical history and being upfront with your care team about your medical needs is vital to progressing through your limb loss journey. This includes your daily activity level, hobbies you enjoy, any physical activity you perform, and your personal goals for post-operation life.
Checking with your insurance provider about your coverage will help guide your care team and your limb loss journey. This will also help with the decision-making process of selecting the right prosthesis for you. Learn more out insurance policies and the classification of different levels by clicking here.
Overall, communication with your care team is an important part of your limb loss journey.
When in doubt, remember the PACE method:
- Present detailed information
- Ask questions
- Check your understanding of information
- Express concerns about the recommended treatment
Community and Self-Advocacy
Supporting others in the limb loss community is the key to making changes to how the rest of the world views the limb loss journey process. Your local community likely has some support groups you can join, and hospital systems may offer their own programs to put you in contact with an experienced limb loss individual who can help answer your questions.
Finding a support group is great for getting information you might not have known you were missing, but it will also help you grow your own form of self-advocacy. No one should be excluded from daily activities, hobbies, education, or work-related placements because of their limb loss or limb differences. You are not defined by your limb loss journey, and no one else should be either.
Here are some resources you can look into to know your rights as an amputee and what programs are available to you:
Certified Peer Visitor Program
P&O Care proudly hosts a formal Certified Peer Visitor (CPV) Program through the Amputee Coalition of America. CPVs are patient volunteers that have adjusted well to limb loss, lead full active lives and are passionate about sharing their experience with others. Peer visitors meet patients and their families in person, via email or over the phone to listen and provide support following an amputation.
All certified peer visitors have completed an extensive training course, have a firm understanding of the rehabilitation process and believe in honest, compassionate conversations. We strive to match patients with a peer visitor of similar gender, age and level of limb loss to ensure an impactful and positive experience.
For more information on CPV, or if you are interested in becoming or meeting with one, please click here and fill out the request form.
Be Your Own Advocate
Success is not measured by your progress and is not a box to be marked on any medical report card. You are the key to determining your success and whatever you consider to be succeeding in your limb loss journey is all that matters.
Check off your goals as you meet them. Continue adding new ones as your journey progresses. Strive to achieve something you believed impossible before your journey began. You have support behind you every step of the way and we all want to see you succeed.
If you have a personal limb loss journey you would like to share with us, contact us today or tag P&O Care on social media with #LimbLossAwareness for your chance to be featured on our website and social media feeds. We cannot wait to hear from you!
This content includes information provided by Amputee Coalition and First Step: A Guide for Adapting to Limb Loss. For more information or resources on getting involved with others in the limb loss community, please visit www.amputee-coalition.org.