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Hi there from Amber, a member of the Arm Dynamics team and frequent author of our blog articles. Lately, I’ve been thinking a lot about what it takes to find a new normal after an upper limb amputation. What are concrete things that can help people move on to the next phase of their life after experiencing something as devastating as limb loss instead of stalling out? I’ve been speaking with many patients and healthcare professionals about this idea, both inside and outside of the Arm Dynamics team. I think it may come down to a few ideas: support, attitude, and seeing others thrive with a similar amputation or limb difference.

Support

Many people on the Arm Dynamics team that I spoke with about this pointed to support being a huge factor when it came to people being able to move forward with their rehabilitation. Support can come in many forms. The people on your healthcare team. Your partner or spouse. The friends you have, and if they know how to help someone through tragedy or if they wait to be asked. Support can come from a belief in God, or a feeling you are supported by a higher power and/or have a built-in support system at church. If you have the option, a mental healthcare professional can be a great resource. In addition, there’s support from your case manager and your prosthetic care team.

I spoke with a patient’s wife, Deb, who told me that she and her husband, John, were able to weather the difficulties that came with John’s amputation, including pain and unemployment, in large part due to two factors: their faith in God and the help of their friend from church. This friend took John out to restaurants and played chess with him and provided overall support during a difficult time.

Both asking for and accepting help can be incredibly difficult, but try to keep in mind that many of the people in your life want to help badly and may not know how. It’s okay to ask for help with specific tasks or just for someone to come and spend time with you. It can be such a relief for someone in your life to be given a task because they want what is best for you but don’t know how to provide it. The same applies for anyone reading this article who is a partner or caregiver of someone with an amputation.

Holding Hands with a Prosthesis
Our patient Gerry holding hands with his wife Denice.

Attitude

A person’s attitude is also a big factor. I spoke with our Portland, OR, prosthetist, Mac Lang, about this. “Inner resilience can make a big difference. If people just innately are naturally able to move on and move past challenges and obstacles, that can make the prosthetic journey easier on them.” But Mac was clear that even when someone is less optimistic, learning to use a prosthesis can help them create a new normal. “It’s helpful to think about the prosthesis positively and determine how much it’s needed. If someone thinks they need their device, then they’re going to wear it more often, and that can help them with day-to-day life. Just deciding, ‘Yes, this is a tool that I need,’ can make a difference.” But pain can be a determining factor, too. “If someone is experiencing a lot of pain, it’s key to figure out how to create a prosthetic device that can help minimize that pain. Craig Holbine is a great example of someone who was having trouble accomplishing his goals because the first prostheses he received were giving him too much pain he couldn’t wear them.” After coming to our center in Portland, where Mac and his technician, Cullen, were able to create a device that was comfortable, Craig is on his way to meeting his goals of cooking for himself, fishing and hunting.

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Craig out fishing with the device that the Arm Dynamics Portland center made him.

Speaking of Craig, he sees the path to recovery as less about someone’s attitude and personality, and more that someone might be ready to move forward one day and have a difficult day the next. “It’s all moment to moment, at least for me it is. Some days I am motivated and others I’m not. Everybody’s struggle is different, none harder or easier than anyone else. Everyone’s going to be stuck at times.”

When it comes to attitude, giving oneself grace can go a long way. Rehabilitation is incredibly difficult. Years ago, I met someone with ulcerative colitis, an inflammatory bowel disease. She told me something that a nurse told her after reconstructive surgery that has stuck with me since: “Recovery is not linear.” Just because yesterday was a good day, it does not mean that tomorrow will be better. Just because you were able to do something new yesterday, doesn’t mean you’ll be able to do it today. Just because you were able to wear your prosthesis for a long time and get a lot of things accomplished today doesn’t mean you’ll be able to do the same tomorrow. Our patient Lynda found out that last one that it can be easy to overdo it in the first few weeks of wearing a prosthesis.

Attitude can be really hard to change overnight, and it can be one of the biggest obstacles to moving forward after an amputation. People don’t suddenly become resilient. But there are ways to change. Carina Geraldez, clinical therapy specialist at our Dallas center, had some thoughts on this: “If someone is resilient, it helps them with their outlook on life and its challenges.” So how can someone cultivate resilience? Carina had a few videos to suggest, from Harvard University, Alberta Family Wellness and a channel called “How to Achieve a Blissful Life.”

Seeing Others Thrive

Shawn Johnson is an occupational therapist who specializes in upper limb loss and the founder of the nonprofit, Enhancing Skills for Life. The Skills for Life workshop gives people with bilateral upper limb or quadruple limb differences a safe space to socialize, be active, learn from others and feel supported. I asked Shawn what can make the difference between someone who pursues their goals after limb loss or congenital limb difference, and someone who might get stuck for an extended period of time.

"What I’ve seen at all the Skills for Life workshops, is that the biggest impact is face-to-face interaction with others that have a similar limb difference. This can be a motivator like no other. It can turn things around for them. I knew a physical therapist in Utah who told me that she was having a very difficult time getting her patient to actually come to their appointments wearing their prostheses. But the week after the Skills for Life workshop, she came to the rehab facility, wearing her devices. Who knew that would be this patient’s motivator, but it was.”

Peer Support Steve and Brian with TASKA copy-1-topaz-standard v2-2x
Steve, left, a new TASKA hand user, meeting Brian, who'd been wearing his TASKA hand for a year at that point.

This type of face to face interaction between peers is the reason behind the Arm Dynamics peer support group. It’s also why our patient, Abram Baker, was able to move forward. In the days and weeks after his injury and amputation, Abram was having a hard time thinking about what the future might look like. Then, “I watched a documentary called ‘Charged’ about a chef and him losing his arm. His name is Eduardo Garcia and he was an inspiration to me.” Not only was Abram able to get back to doing what he loves, customizing 4x4s for off-roading with his son, he started a non-profit, The Wounded Wing Foundation.

Abe with his wife Susan
Abram at home with his wife, Susan.

By watching someone else thrive with their amputation, Abram was able to not only imagine what his life could look like post-amputation, he was able to create something that brings meaning to his life, which can be another huge motivator when it comes to trying to move forward.

“We know everyone's gonna be in different stages of their recovery no matter their timeline,” Shawn continued. “Some people might be three months out from their amputations and doing well. Some people might be six years out and some people might be 20 years out and in the same place everyone's so different. So, even like 10 years out, people might still not be in a good headspace. But if they’re able to connect with someone who they see as similar, they might be able to move into a better headspace.”

In some ways, this approach is a little like exposure therapy. Because upper limb differences are so rare and are almost never portrayed in media, it can be hard for our brains to think that someone with a difference is capable of doing most of the things that people without a limb difference can do. But with exposure, or consistent peer support, our brains can reprogram themselves to think differently about what is and isn’t possible.

Connecting yourself with an upper limb prosthetic care company that truly sees you as a member of your own care team can also make a big difference. When interviewing our Arm Dynamics prosthetists, technicians, prosthetic assistants, clinical therapy specialists, patient relationship managers, center patient coordinators and our JAB team, so many of them referred to our company as a “family,” and that consistently included the patients as well. “I will never get tired of the look that patients have when they walk out of their first consultation with our clinical team,” said Elvia, the center patient coordinator at our center in Houston. “They have hope in their eyes.”

If you or someone you know could benefit from upper limb prosthetic care, please contact us. If you have any comments, including your own thoughts and advice about how to move forward after an amputation, please leave them below.

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