Tag: advocate

A Work In Progress

A Work In Progress

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Taking Action During “Construction”

 

 

We are all a work in progress. That’s life, right? We all have those moments where you feel you are working on something in your life. Your health, a career, or relationships, you name it.

But what do you do in these moments? How do you continue to grow and better yourself during the construction?

It all starts within you. We begin by working on ourselves.

Right now, while I would rather be working out, being with my horses, and hiking, I can barely walk around my house due to having to use a test socket that is uncomfortable and rubbing me raw. And during this time, I am feeling miserable! I was trying to kick start my health since surgery but have hit moments where I need to work on patience, and heal. Now I feel so far removed from being in shape and that takes a toll on my mental game. Now that I’m in this situation I cannot get to my horses because it’s too hard to walk on normal surfaces, imagine walking across uneven ground of rock, sand and dirt.

 

 

This is my time to focus on my thoughts and heart. This is a time I am put into a slow down phase and being led to work on what I can.

 

How do we go about working on ourselves? We start with seeing the good in the world, seeing the good in our situation and finding joy in the moment despite your circumstances. Next we can assume the best, meaning when we assume the best in a person we can control our emotions much better which leads us to less anger and frustration and more joy. Finally, we must act!

 

 

 

This week we must ACT! Not when we feel it or when joyfulness is in us, but rather right now! Maybe you are struggling or hurting right now. This is the time to look outside of yourself and your situation and reach out to another human, your neighbor, to spread joy and positivity.

Maybe you check in on a neighbor, share a conversation and a smile.

Take care of your support system around you: your spouse, family member, a friend. Let them know you care and are grateful for all they have done for you.

Maybe you see someone struggling in a parking lot, getting groceries in their car. Spend time spreading love and helpfulness by giving them a hand.

It doesn’t take money or a lot of time, it just takes your attention and to show someone, “Hey, I see you. Thank you for all you do. Let me help you”.

 

Whatever you do, do in love, with patience, kindness, and selflessly.

When we give of ourselves, we share love, we show our humanity, and we spread goodness into the world. The world could use that right about now.

Imagine if everyone looked inward and made changes on themselves. Imagine the kind of world we would live in with that kind of kindness being spread!

Wouldn’t that be something!

So, Dear Warriors, what are you going to do while you are under construction this week?

How can you make a difference in spite of your circumstances?

When you focus on others you take the focus off of yourself and it allows you to get out of your own head and release what has been holding you back in your “construction time” and place it elsewhere. What you will see is that your life will be enriched and fuller. Your joy will overflow when you bring joy to others.

Try it and get back to me! Let me know how it’s going.

I’m rooting for you, Warriors! You are strong.  You are special. You are loved!

Have a blessed week ahead, and as always,

Be Healthy,

Be Happy,

Be YOU!!!

Much love,

 

 

 

 

 

To Travel is To Live

To Travel is To Live

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A Journey of a Thousand Miles Must Begin With a Single Step

-Lao Tzu.

 

Traveling is exciting but can also be stressful. Packing the right clothing for the weather, the events, and what makes you feel amazing. You try to pack neatly and concisely so you can pack everything you want and need.

As an amputee, things become a little more confusing and worrisome. What will you need? What MUST come with? What if this happens or that happens? All of a sudden, packing and traveling becomes almost impossible. How will you ever pack for every situation with the space you have?

There are so many rules with TSA and airports. There are so many unknowns in hotels. Knowing how to navigate these specifics with travel comes with experience. You learn more, for your unique situation, as you go but we can also help each other as we gain our own understanding and experiences.

Today I share my tips and tricks and my own experiences from the years of traveling, especially by plane, to help you on your own journey in hopes that you can enjoy your time more and worry less.

As you travel more you will become less worried about the process and be able to focus on the trip, and enjoy making memories.

You will find ways to make each trip a little more efficient and packing a little more streamlined.

If you are traveling soon, by plane, give yourself plenty of time the first few trips so you don’t feel rushed or miss your flight.

Don’t be too proud to use a wheelchair as you go through airports, and make sure you bring your basic amputee necessities. I kept a list that I accumulated as I went (things I realized I needed but never thought of or forgot in the beginning), this way I could check off the items I needed each time I packed for a trip. It eventually became unnecessary after traveling many times over the years.

Traveling should be a way to unwind and enjoy life after all you’ve been through. When you’re ready to begin travels, don’t be held back by fears, just charge forward and live!

It’s time to experience life and move forward from your amputation. Go enjoy the world and make memories!

“A ship in harbor is safe, but that is not what ships are built for.” -John A. Shedd

 

 

You were built for more than sitting around and wishing for more. You were meant to experience it! Go out and enjoy these moments now and chase down those dreams!

 

Go out, Warriors, and explore the world. You deserve it!

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

 

What Is Really Important

What Is Really Important

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Knowing Who and What To Ask About Amputation

 

 

Becoming an amputee is so surreal. Electing to have it done is a choice I never thought I would have to make.

It brings about fears, anxieties, questions, and so much uncertainty.

How do you know life will be better?

What if I can’t wear a prosthesis?

Will I walk again or will I be in a wheelchair the rest of my life?

How long does it take to heal from an amputation

Do I get a leg right away?

Is walking like riding a bike, easy once you do it again?

How do I find a prosthetist?

Do I need to go to PT while I’m healing or after I get a leg?

So many questions, yet so many more that you may not even be thinking of.

How do you know what to ask your doctor? What type of doctor is best for this surgery?

Who is the most important person in your life right now, or how about in 5-10 years?

Most of these questions I, myself, didn’t even know that I had because I didn’t know I needed to ask them.

But I got lucky, or maybe it was fate.

My surgeon was amazing.

He sent me to the best prosthetist in town at The Limb Center.

The Limb Center sent me to an amazing, caring physical therapist at Touchstone Rehabilitation.

They were my team, and besides my family, they were my biggest supporters and fighters for my life, dreams, and goals.

 

Listen in today, and please share this episode with someone you know is going through, or about to go through, amputation. It may give them a better than fighting chance of knowing more about what is to come and allow them to find greater success as an amputee.

We all have a warrior spirit within us just waiting to be called out.

You need to educate yourself, and learn to fight for the life you want.

Now is the time to be that warrior, so rise up, dear Warrior, and pave the path to your successes.

I hope you find something that helps you, motivates you, and supports you in this episode. Don’t forget to like and subscribe so you don’t miss an episode.

Have a blessed week ahead.

And as always,

 

Be Healthy,

Be Happy,

Be YOU!!!

Much love,

 

 

 

 

 

 

 

 

 

To Revise Or Not To Revise

To Revise Or Not To Revise

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That is the Question

Amputation is a difficult road, one that can change direction quickly, even after you heal.

For many amputees the surgical side of their life isn’t over. Many of us end up needing a TMR surgery or even a revision, while others will have to amputate even higher! Going from a below knee to an above knee amputation is life changing because one amputation is completely different from the next. What is required of you to be able to walk again, heal again, and trust again takes its toll.

So why do revisions happening? Why are they required for so many?

For some people their bone density is compromised. For others, bones spurs grow causing pain, And still others, myself included, find foreign objects left in their limb that no longer serve a purpose and only cause distress for the nerves. There are so many reasons that revision is brought up in doctor offices around the world and so many amputees who find it hard to wrap their head around being opened up again.

 

 

This past summer, just 8 weeks ago, I had this very choice. I was a possible candidate for an experimental surgery that I wasn’t sure the rewards were worth the risks, until we did a CT scan finding a foreign object coming out of my femur, causing the pains I have been dealing with for 6 years!

But what if your story isn’t so clear cut? How do you decide that revision is right for you?

 

 

 

Make a list of pros and cons about your revision.

Compare them and talk about them with your family and the people who support you.

Be open minded, not all revisions are necessary and timelines change.

Allow the chips fall where they may and be attentive to what’s going on around you: how have you been feeling, how’s the pain, is there something specific that you really must have done (maybe you have an underlying infection-you don’t want to wait on that one), maybe you’ve been promised a “nicer” looking residual limb.

Whatever it is, weigh that in your mind and on your list, and ask, is it necessary, and if the surgery doesn’t go as planned are you ready for that outcome?

And finally, something I’ve always believed in, Mindset and Manifestation.

 

 

Make your decision then, if you’re going for it, leave the “what if’s” behind and start setting your goals and VISUALIZING your successes post-revision. Your brain is powerful and where you led it, it will follow!

You are stronger than you know, dear Warrior!!!

It’s time to rise up!

Have a blessed day,

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

Make It Personal

Make It Personal

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Amputation is a tough road. If you make the decision to amputate or if your limb is taken from you by accident or disease it’s a bumpy ride, right from the get go.

Most people assume that once you get through the surgical part and physically heal that you are back to life as usual. that couldn’t be farther from the truth.

As an amputee with 6 1/2 years of experience I can tell you that once I healed and was able to get fitted with a prothesis my journey of ups and downs was just beginning.

The one aspect that I am extremely grateful to my GP for pointing out to me was insurance. Even though I had my head wrapped around the idea of taking my leg, and I knew I had the grit and determination to tolerate all the limb changes that were coming, I needed to be sure that A) I knew what type of prosthesis I needed to live an active life and B) that my insurance covered it.

What I fought for:

 

 

 

 

 

 

This was the beginning of the most emotional and draining 4 weeks of my life. This was a fight I wasn’t prepared for, even though I thought I was.

This week I take you through what I did to cover myself, (or at least thought that I was covered), what happened that spun me out of control for 4 weeks, and how I bounced back to fight for the leg I needed to live a good and healthy life.

You may have to deal with this for yourself or someone you love, it’s good information, and from someone who now has to fight every 3 years to get the leg she needs to be mobile and I hope that my story helps you in your fight.

“No”should never be the answer when someone wants to be as mobile and healthy as they can be. We must learn how to prepare to face the insurance giants and how they work so we can be ready to stand up for ourselves and the lives we want to lead.

It’s no easy task but it is one worth our time and energy.

Remember the old saying, “The squeaky wheel gets the oil?” That became my motto that entire month I fought for my prosthesis.

Are you facing this blockade in your future, or even right now?

Check out how I went to battle and what you can do to prepare yourself.

 

 

Let’s get prepared!

First, understand your insurance plan. Look for what is covered under external prosthesis devices and what is needed to be approved, usually notation from doctor of it being “medically necessary”.

Second, get with your prosthetist and find out exactly what type of prosthesis you’ll be getting according to what your lifestyle was, what you dream of doing, and what you will be capable of (Usually you’ll take a K level test to determine your ability-my PT did this with me).

Third, get the code(s) that can be tricky and denied by most insurances and start making the call to your insurance company and ask if it’s covered by your insurance.

I even went to the extreme of calling my insurance company multiple times over the 4 months before my surgery to hear different employees tell me that “Yes, that code is covered.” Now they had it on recorded phone calls (Important to know that all calls are recorded, however, if you ask for the recordings they will tell you that your lawyer will have to file for them!!! Yes, I asked because I thought I was going to have to sue them for undo stress!).

This should be a great start to getting your approval, but even though I did all of these things, I actually got a big ‘ole “NO!” after my amputation… and while I had done my due diligence I hadn’t planned on my insurance company changing the wording on my plan after the first of the year to NOT include the code that was previously approved.

These are the unknowns you can’t prepare for but must find it in yourself to fight beyond that. You need to connect with people that can help, your doctor, your prosthetist, the prosthetic company even has their own insurance coordinator, and MAKE IT PERSONAL!

I made sure the calls I made to supervisors every day that month that I told them who I was, about my family, and my hopes and dreams I had for my future. You are NOT a claim number you are a person with a life. Make them see that and feel that.

 

These are just some starting points but I hope they help you navigate the crazy world of insurance claims.

Now get up and fight for your life of your dreams!

Don’t take No for an answer, dear Warriors!

Rise up and fight!!

Have a beautiful day and as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

 

The Secret Sauce

The Secret Sauce

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Letting Go and Leaning In

 

I have been an amputee for 6 1/2 years, but before that I had a taekwondo injury that took me through 5 years, 10 surgeons and 10 surgeries, plus a blood clot to decide it was time to start living again and make the biggest decision of my life.

Alone in the decision, I was not. I had an amazing support system with my husband, two boys and my family back home. I had friends rallying around me and a church I belonged to. However, I was exhausted.

I had put so much energy into saving my leg that I had depleted all of my positivity and resolve. How was I ever going to come terms with cutting off my leg?

Today I want to share with you all my story of Faith. I feel it is time to be true to myself and honor my beliefs.

I could NOT have done this without my “Secret Sauce”.

I get asked a lot how I handled making this big decision and how I keep going despite the pains and trials of being one leg down. I did NOT do it alone, but it takes something more than cheerleaders in my life. No, my “secret sauce” is greater than anything else, greater than my own drive or perfectionism. I needed to find peace and purpose in my decision.

If you are struggling my hope is that this brings some answers and help for you. Maybe you are curious as to where my positivity comes from or my resolve. Today I share my profound experience with my Faith that changed EVERYTHING in a moment…and I have never looked back.

I hope my experience helps you and opens a door you never knocked on. Let me know. Reach out to me with your own profound experience with faith over fear, or just let me know how you struggle. I would love to help you through my own challenges. There is no need to go it alone or to feel abandoned. You have a great cheer;eager in your corner that wants you to live a great life. Trust and look up, Warriors!

 

I hope you all have a blessed day and as always,

‘Be Healthy,

Be Happy,

Be You!!

 

Much love,

Dr Hugh Herr: Bionics and Beyond

Dr Hugh Herr: Bionics and Beyond

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The AMI Procedure and Magneto Micrometry

 

This week I was honored to have back on my podcast, Dr Hugh Herr.

Hugh is a bilateral below knee amputee and a professor of Media Arts and Sciences at MIT.

He directs the MIT Biomechatronics Group and Co-directs the K. Lisa Yang Center for Bionics.

Time Magazine coined Hugh the ‘Leader of the Bionic Age’.

He has also authored and co-authored over 350 peer-reviewed manuscripts and patents, chronicling the science and technology behind his many innovations.

Dr. Hugh Herr is, in short, making huge contributions in the amputee community, giving amputees a hopeful future in living active and healthy lives.

Today, we discuss the AMI procedure (agonist-antagonist myoneural interface) which is the surgery I just had done in Boston with Dr Matthew Carty (co-creator of this surgery with Hugh) on June 20.

I was back in the MIT Media Lab over a year and a half ago, when I first met Hugh while I was a control group to test their bionic knee based on my traditional amputation.

Little did I know that less than two years later I would undergo groundbreaking surgery to improve my limb and prepare my body to use the myoneural knee that is soon to be made commercial.

This is exciting and unbelievable technology that brings hope and excitement to me, as an amputee, because we are going to see a huge change in our mobility based on this type of procedure plus the bionics, 3D printed sockets, and the Magneto Micrometry that is coming out of MIT!

 

Hugh working with a PhD student on the “bionic” knee. Photo credit. Jimmy Day/MIT Media Lab

 

Amputees, get excited for what is coming!

Our future looks so bright and we are going to have technology on our side so we can reach our goals and dream big dreams!

 

Listen in as Hugh takes us through everything coming down the MIT Media Lab pipeline and how it’ll work together to make us stronger, healthier, and more capable than ever before!

Warriors, this is incredible and inspiring!

Thank you, from the bottom of my heart, Hugh, for taking time out of your very busy schedule to speak with me and bring more visibility to our future as amputees and for all the innovations and dedication to making us more complete and more than capable than we ever thought possible.

We appreciate you and all of your students and colleagues at MIT and MassGeneral.

 

For more information on the AMI procedure check out my June 9, 2025 episode with Dr. Matthew Carty HERE

And for a more in depth conversation with Dr. Hugh Herr about his journey, you can listen HERE

 

If you have any questions or thoughts on these technological advancements, please reach out to me and let’s have a conversation!

Hope you all have a beautiful week ahead.

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

That’s A Wrap!

That’s A Wrap!

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Loss/Limb Difference Awareness Month 2025

 


Garrison Hayes and Eric Gutierrez-Camacho
Colorado State University

John McCollough: MIT
Ophelie Herve: UCLA
Mira Mutnick, Jake Kanetis, and Marty Kilbane
Colorado State University

Dan Levine: MIT

As April comes to a close we say a huge thank you to all of the university students ts who came on to share what they have been working on, in the fields of mechanical and biomedical engineering, robotics, and media arts and sciences. All of these amazing students have a passion for assisting and improving the lives of people in the amputee community with their genius and creative enhancements to prosthetics, sockets, surgical procedures and research.

I cannot thank them all enough for caring so deeply for our community and for working so hard to improve it.

As this month closes out I want to entice you all to subscribe to my channel as next week we begin to explore phantom pain.

I have a professor from Harvard coming on to talk about his study into how the mind works, and how it can be used as a tool to combat phantom pain. Very intriguing conversation and maybe a few cues for us amputees to use to begin taking charge of our bodies without the use of drugs.

Please make sure you stay tuned for future episodes!

hHave a very blessed and wonderful week,

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

much love,

The Future is Now: Part 4 of 5

The Future is Now: Part 4 of 5

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University of Michigan

Mira Mutnik, Jake Kanetis, and Marty Kilbane

 

 

Amazing conversation with not 1, not 2, but 3 PhD students at the University of Michigan this week!

A true, authentic conversation about the innovation and design of future prosthesis and the growth and research of creating a surgical procedures to aid in using these newly designed prosthesis all with the purpose of replicating the natural human movement.

We packed so much conversation into this episode with so much more we could have talked about.

Once again, we discussed what we could, but some details must be left out due to the highly competitive field these young adults are working in.

What I love about these three students is that even though they are all in a different sector, so to speak, of research: Mira-above limb amputees, Jake-below limb amputees, and Marty-prosthetics, they are all working towards the same goal; creating the best way to unify the surgical procedure and prosthesis to give the amputee the best, most natural movement possible.

 

Jake all hooked up to monitor human movement to collect data for his research

 

Marty working with a study participant on their design of a prosthesis they are working on in the lab.

 

Mira collecting data on her upper limb project and how to get the best hand movement and dexterity of a prosthesis.

 

We had a great discussion of what it could look like for the future of amputees and the length of time these studies take. There are a lot of hoops to jump through, safety regulations, data collecting, and trials. The FDA must approve procedures and products that they hope to take to market some day, but these students have become three of the many students going through the program at University of Michigan, working tirelessly to bring this technology closer to us being able to access it.

I find it so unique to see the shift from making the newest, coolest, most advanced products for us to wear, as amputees, to surgical procedures to make our bodies work in harmony with a prosthesis. The one thing we did dive deep into was the procedure of getting candidates who fit the bill to doing the trial procedures, and finding willing participants as well. This can be so tricky as we struggle with the idea of going back in and revision the original amputation in hopes that the outcome will be the same if not better, but the concern that it could be worse.

I hope you will join us today, listen to the entire podcast and see what dedication these students have for helping our amputee community, what motivates them to continue into this higher level of study, and what their plans are for their future after graduation.

Thank you Jake, Mira, and Marty for sharing your passion. Your dedication to helping our community find a better way to live is inspiring and deserves our gratitude!

Continue doing what you’re doing, and know we all thank you for the time, ideas, and ingenuity to take amputees to the next level!

Please make sure you all Like, Share, and Subscribe so you don’t miss an episode as we continue with our 5th Student interview next week as we visit MIT again from a different angle.

Wishing you all the best, and a blessed week ahead.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

The Future is Now: Part 2 of 5

The Future is Now: Part 2 of 5

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Limb Loss Awareness Month

  1. MIT: John McCollough

 

John is a student at MIT in Cambridge, Massachusetts working towards his Masters and PhD in Medical Engineering.

I met him a year and half ago when he reached out to see if I was interested in coming to MIT for a Gait Study that he was assisting a student working toward his PhD. Of course I said Yes!

 

This is what it looks like when you agree to a gait study!

 

 

Now as time has flown by I have gone back to check on John’s progress in the field of Biomechatronics, stayed connected with those in the lab and couldn’t wait to have him on the podcast.

 

 

Once in the media Lab building you can see prototypes, unique sculptures, and their purpose and mission.

 

However, a quick disclaimer, some of the work being done in the MIT Media Lab, like other universities, is private and not up for discussion as they are still in the works of their projects in a very competitive field, but the topics we discuss today are amazing, eye-opening and incredibly groundbreaking and I can not wait for you all to hear what’s on the cusp of becoming products and procedures available to the amputee community!

John working on the project I took part in last year.

Let’s jump right into our conversation on the work being done with 3D printing, Oesteointegration, AMI procedure, and how students and university create, trademark, and market their designs and how long this process can take.

Once again, I am blown away at the desires of these young men and women to create a better world for our amputee community.

The future is looking so good and positive for us and I truly want these students to be seen for their hardwork and dedication to a community they are feeling led to assist. We are extremely blessed with what the future holds and I believe that the next 5, 10, 20 years we will see the struggles of amputees today become minimal if not obsolete, making our lives stronger, healthier, and physically complete.

Join me this week as John and I discuss all things on the drawing board and please don’t forget to Like, Share, and Subscribe so you don’t miss any of these university students’ conversations about the future of prosthetics.

 

John McCollough MIT Masters student Mechanical Engineering

John, thank you for spending time we me on the podcast and sharing so eloquently the field of study you are in, breaking down the process so we could understand the stages of a study, and for sharing the work that could be shared. I look forward to having you on again as you complete your Masters and PhD.

Thanks for joining us  and I hope you have a beautiful week ahead!

And as always, until next time,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

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