Strength in Numbers

While there is something alluring about the concept of the lone wolf, it cannot compare to the sophisticated and harmonious network of a pack. Efficient, mutually beneficial, led at the front by wisdom of experience and supported by strength. This carries to humankind.

Support Groups

Support groups have a long history in our society with a proven list of health and well-being benefits for those involved.^1,2,3

Let’s explore various options for finding a support group that meets your individual needs. A great place to start is to speak with your PT or Certified Prosthetist Orthotist. They can recommend a local chapter, and chances are, an affiliated hospital or even your O&P clinic may sponsor a group.

Image by freepik.com⁴

Prosthetics

Support groups dedicated to LLLD are a great place to learn skills and network. As my friend told me, it’s also a place to “compare gear.” With that social interaction, information about prosthetic technology is shared by users and clinicians as well as helpful life hacks. Inside tips, camaraderie, shared experiences and psychosocial support are just a few aims of these groups.² Reichman & Bartman discuss how integral caring for “the heart, the head, and the residual limb” are during the healing process following limb loss, and I couldn’t agree more.¹

The Amputee Coalition is an excellent resource for finding a support group in your area.⁵ More than just providing a repository of chapters, the Amputee Coalition partners with healthcare providers to ensure reputable and responsible support. Their Certified Peer Visitor program is founded in research and implemented by well-trained, well-versed, committed individuals.⁶ Inquire about setting up a meeting with someone in your area.⁷

Orthotics

While I have not come across support groups focused solely on orthotic users, individuals can learn about orthoses relative to their healthcare needs in a variety of diagnosis-specific support groups. The National Institute of Health provides an extensive list of chapters associated with neurological health conditions.⁸

Here experiences are shared, knowledge is imparted and bonds are formed. This isn’t malarkey, I assure you. I have seen it in action. Following orthotics and prosthetics clinic I would see a few female outpatients gather together laughing, making lunch plans and discussing the upcoming support group meeting dedicated to those with post-polio syndrome. They would share with me how when someone stopped coming to meetings the group would reach out to check in, how they appreciated the doctor who would compassionately and effectively lead the meetings and how they shared with each other different tips from their orthotists. Their connection was visible and not defined by the similar orthoses they wore.

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Whether you’re sold on the idea or still need time to warm up, I ask that you give yourself the chance to explore your options. You won’t know until you try and knowing is half the battle™.

Resources

Here’s a smattering of potential sources to help you on your journey. I invite you to add to the list by using the comments section to build our support base. Many thanks and well wishes!

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References

1. Reichmann, James P. and Kimberly R. Bartman. “An Integrative Review of Peer Support for Patients Undergoing Major Limb Amputation.” Journal of Vascular Nursing, vol. 36, no. 1, 2018, pp. 34-39.
2. Nathan, Edward P., and Sandra L. Winkler. “Amputees’ Attitudes Toward Participation in Amputee Support Groups and the Role of Virtual Technology in Supporting Amputees: Survey Study.” JIMR Rehabilitation and Assistive Technologies, vol. 6., no. 2, 2019, pp. 14887-14887
3. Keeves, Jemma, et al. “Social and Community Participation Following Traumatic Lower Limb Amputation: An exploratory Qualitative Study.” Disability and Rehabilitation, vol. ahead-of-print, no. ahead-of-print, 2022, pp. 1-9
4. “Hand drawn people with disabilities illustration.” freepik, <a href=”https://www.freepik.com/free-vector/hand-drawn-people-with-disabilities-illustration_31887033.htm#page=2&query=leg%20brace&position=18&from_view=keyword&track=robertav1_2_sidr”>Freepik</a>.  Accessed April 22, 2023.
5. “Support Group Network.” Amputee Coalition, https://www.amputee-coalition.org/support-groups-peer-support/support-group-network/. Accessed April 28, 2023.
6. “Certified Peer Visitor (CPV) Program.” Amputee Coalition, https://www.amputee-coalition.org/support-groups-peer-support/certified-peer-visitor-program/.Accessed April 28, 2023.
7. “Request a Peer Visit.” Amputee Coalition, https://www.amputee-coalition.org/support-groups-peer-support/certified-peer-visitor-program/request-a-peer-visit/. Accessed April 28, 2023.
8. “Patient Organizations.” National Institute of Neurological Disorders and Stroke, https://www.ninds.nih.gov/health-information/support-resources/patient-organizations. Accessed April 28, 2023.