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If you ask a question via Tumblr.

Hi - I want to make sure you are aware, if you ask a question directly to me via Tumblr, you have to log onto your Tumblr account to see my response.  Or, make sure your Tumblr settings notify you of any new message/email you might have received.  The Q&A are not published on my blog.

I think I’ve responded to everyone who has asked questions so far. Once I respond to your question, Tumblr automatically deletes the email & response. I like Tumblr, but just not their Q&A feature.  

Thanks for visiting and reaching out!  -Lori

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Dromedaris shoes

I’m loving my new shoes.  They have more of a heel than I am used to, but I think that is a good thing, since I’ve been inserting lifts into my other shoes to raise my heel.  I feel as if the bottom plate near the toe of the Helios is higher than the heel, so I have to make adjustments with heel lifts.  With these shoes, no lifts are necessary.

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imageCool shoes that fit AFOs are hard to find!  

Tags: dromedaris
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15 months later…

Since a few people have asked if I think the Helios are worth the money, I have to say YES.  Although I went through an adjustment period in the beginning, with some major frustrations, I can honestly say the Helios have helped improve the quality of my life.  

My legs no longer fatigue as quickly as they used to. My balance has drastically improved.  The speed of my walk has increased greatly.  And even my posture has improved.  

It took some time for my hips to adjust to walking in the Helios, but now things are more “normal”.  I also think back to the smallest of inclines that gave me trouble in the beginning and realize how far I’ve come.  I still have to “put it in 1st gear” to go up steeper inclines, but they are doable.

One issue to be aware of with the Helios is how rigid they are.  They are not flexible like my plastic AFOs were (those were too flexible and provided very little support).  Since my quads were weak when I first received the Helios, I had trouble doing little things like bending, standing up, sitting down.  Now I have to roll up onto my toes in order to sit down.  Stairs are the hardest for me right now. I definitely need a handrail when going up and down steps.   

Overall, the benefits the Helios provide me far outweigh the minor annoyance of stairs.  Are they worth it?  YES!

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Shoe shopping at home, thanks to Zappos.

If you wear AFOs, then you know how frustrating shoe shopping can be. Since the Helios are wider than my old plastic AFOs, I had to find shoes to wear, other than the pair of New Balance tennis shoes I’ve been wearing for the past six months.

If you don’t know about Zappos, they are an online shoe store where you can find any type of shoe you are looking for.  What I especially like about Zappos is the free shipping and free returns, which means I can have as many shoes sent to me as I want, and return the ones that don’t fit, all for free.  Plus you can find shoes in wider sizes, to accomodate the AFOs.imageOut of the 5 pairs I received, all of them fit, but two worked out really well, which is a miracle when it comes to fitting AFOs.  The two pair I am keeping are the Cobb Hill black mary janes on the left, and also the black Earth shoes with laces, in the middle of the photo.  I guess it’s no surprise the Cobb Hill shoes worked out, since they are a part of the New Balance family.  Thank you Zappos and New Balance!

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Insurance coverage for Helios

Prior to booking my appointment at Ortho Rehab Designs to be fitted for Helios, I checked my health insurance coverage and discovered the Helios would not be covered since they were out of network.  I called BCBS network exception department and asked for a case to be opened and reviewed for pre-approval.  After asking me a few questions, along with contacting the provider (Ortho Rehab Designs) and asking for more information on the Helios, I was informed the Helios were pre-approved and would be covered as an ‘in network’ claim under my insurance!

If you want the Helios and they aren’t covered under your health insurance plan, don’t be afraid to call your health insurance company and ask for an exception.  They can say “no’ but they can also say “YES” too!

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An afo is just a brace, unless it’s a Helios.

I had to send back the Helios to ORD for some minor adjustments. Almost two weeks without the Helios was not fun, but I knew the adjustments would be worth it.

I asked for the following adjustments to my Helios:

  • Remove the thick padding in the knee shell and replace with a thin layer.  When I left Vegas, the padding was layered heavy due to rubbing and irritation on my legs.  The Helios were hitting parts of my legs my old afos never touched.  You can see in the below photo how thick the padding was.  I also wanted the padding thinned so the afos would sit closer to my leg and not be so noticeable when wearing jeans.  (this cost me $100 per brace which I don’t necessarily agree with).
  • Lower the height of the knee plate by a total of 1/2”.  The Helios were pinching the skin of my knees when I walked, making for a not so perfect fit.  In the past month I was wearing an additional insert between my foot and the Helios so the Helios would sit lower on my leg. I tested this method to see which fit was better.  The Helios as they were?  Or the modification with the additional insole?  (this adjustment was no charge)

When I first made the request for adjustments, I received a little resistance stating “everything done originally to the Helios was done for a reason”.  If you know me, you know I didn’t settle for that answer. I wore the Helios for 5 months to make sure I needed the adjustments and I knew what was best for me and wanted to have the modifications completed.  During the week in Vegas, the adjustments are made on the final Friday of the appointment.  Maybe that isn’t the best time for “final” mods.  Everything is so new, there is pain in places that hadn’t experienced pain and rubbing on the legs where no afo had been previously.  At that time, you don’t really know what is pain due to the newness or pain due to fit. 

Here is a before photo showing the thick padding and where the Helios were hitting my knees.

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Wearing my old afos for almost 2 weeks made me realize just how bad they really are.

  • Wearing Helios, my gait is normal.  I am able to walk heal to toe; whereas in the plastic afos, my foot still slapped a little when I walked.  
  • Wearing Helios, my stride is longer.  Wearing the old afos, my stride is half of that while wearing the Helios.  I feel like I glide across the floor now.
  • Wearing Helios, I no longer have hyperextension in my knees.  With the old plastic afos, my knees were hyperextending when I walk. I would lay in bed at night and my knees would bother me. I really thought I would need some type of knee surgery.  Since wearing the Helios, I have not experienced the knee pain.
  • Wearing Helios, I no longer feel fatigued after walking short distances.  The Helios are energy storing and I have a spring in my step now. I actually feel like walking and no longer look for the shortest route to my destination.  I am excited to walk.
  • Wearing Helios, I no longer trip over small cracks when walking.  With my previous afos, I was always tripping and I would have to look at the ground when walking to make sure my feet would clear any small obstacles that might appear.  Now, I can view what is infront of me, rather than what is beneath me.
  • Wearing Helios, my balance has improved 100%.  I am able to stand in one place without touching anything to keep my balance.   Wearing the old plastic afos, I had to always rely on touching something for stability. Now, I can stand on the curb and wait for a walk signal without feeling like I am going to lose my balance and fall into oncoming traffic.
  • Wearing Helios, my posture has improved. I am no longer hunched over, with my weight bearing forward.  My back and shoulders do not experience pain.    

So, for those physicians and insurance companies that believe another carbon fiber afo would be satisfactory for me and I should go to a provider in network, I beg to differ.   Plus, is “satisfactory” really what I deserve?

Link

Shortly after returning from Las Vegas, I had posted a link to my blog on a CMT facebook wall for anyone who might be interested in reading about my experience with Helios.  I was contacted by Allison, the founder of hnf-cure.org, and fellow CMT’er and wearer of Helios. She asked if I would be up for being featured in a small article on her website.  Click the title, directly above this post, for a link to the hnf-cure post.

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Walking at Sloan’s Lake.

Walking at Sloan’s Lake.

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Because I can.

One great change I’ve experienced while wearing the Helios is the ability to stand still without touching anything for stability.  Now, when I stop to talk to someone, I still catch myself touching a wall or chair for support, but I quickly remember I no longer need to do that.  Sometimes, when I’m at home, I’ll just stand in the middle of the living room and Jerry will say, “Why are you standing there?” and my answer is, “Because I can”.

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Keeping up.

As I was walking out the door from work this evening, two people walked past me, headed in the same direction as my parked car.  Since I have a 3 block walk to my car, I decided to see if I could keep pace with them. Here is the beginning distance between us.

Before Helios, when someone would walk past me, they would outwalk me and would travel about twice the distance I could, in the same amount of time.  

Well, not today.  After 3 blocks, they didn’t gain any distance on me.  

I KEPT UP!