AFO and Running

Hey everyone,  well tonight I didn't work out, instead I really wanted to sit down and  do some in depth research on AFO's for running.  So for the past couple of hours I have been reading and browsing the internet for some insight or direction. As you know Charcot Marie Tooth affects everyone differently by severity in nature. Some have severe cases of CMT, while others like myself have a mild case of it. I categorize myself in the mild case considering I have been doing a lot of research and have read a lot other people blogs in regards to their severity of CMT and I feel that I have been blessed in regards to my ability to still be able to stand and walk without any type of crutches or AFO's. So yes I considered myself blessed based on my severity.

Anyways, I'm having a tough time as well as feeling a little overwhelmed by how many different types of AFO's that are out there. There is a lot that are just made for people to walk in, and for some to just fix their gait, yet I haven't really found any made for running. That's only half my problem, besides that fact I need them to hold up while I'm running, I need ones that can support a big dude like myself. Ultimately I know I will slim down, but it wont be a huge slim down. I just have to face it... I'm a big dude and that's that. So I write to all of you to see if I can reach out to those who either run or have ran in orthotics. If any of you have any suggestion or maybe a specific company that makes AFO's for athletes, as well as they can hold up for 250+ lb guy like myself could you please either contact me via Google+ or email.

I have found a few, one called the "Noodle AFO, and another one by MMAR Medical, and then there is one by Ossur. So as you can see their are option out there but I can't find any info in regards to how they would with stand the beat down of a long marathon run, as well as durability from a big guy like myself. I work in a Orthopedic Clinic so I have tons of resources to my disposal. I was given a name of a company that I was referred to by our DME (Durable Medical Equipment fitter) person. Yet the company I am dealing with has not returned any of my past phone calls. So I can't keep waiting for this person to call me back in regards to some AFO's he said he had "ordered" for me.

Yet the other big challenge is to see if my insurance is willing to either pick up a portion of the bill or will I be footing the whole bill myself. If anyone has any experience in this type of situation please let me know. I am sure I will find something, but I want to be real sure that the AFO's I'm purchasing can with stand a marathon considering the cost I will have to shell out to make this IronMan a reality.

I guess I am a little frustrated and confused... I just want to make the right purchase and make sure I am getting the correct AFO for my needs.

Well thanks again for listening everyone and I just wanted to say thanks to those who started following me. Tomorrow I'm in the gym so Ill try to sneak in a couple of pictures of me and my good friends working out in the gym, without trying to look to much like a perv.


"No ma'am! I really wasn't taking a picture of you" I can totally see it now. ; \


Chat with you guys soon!


-Jaime

Happy Belated Merry Xmas and Training +2 Days

Well after taking a couple of days off  for the holidays, I must say its been a rough 2 days of training since the holidays. Ever sit there on a trainer or a treadmill or whatever you do for inside training. And sit there and ask yourself: "What in the hell am I doing?" Not that the kind of what the hell am I doing, and contemplating giving up. But more of what the hell am I doing in the garage when it's 32 freaking degrees. Yea that's the What the hell I was contemplating. So for me I think WAAAAYYY to much and I over think things as well. For instance the day after Christmas, I get myself on my trainer, and I am pumped and ready to do some sweet spot training. If you don't know what that is, basically its a uncomfortable cadence while pedaling right below what is called your FTP (Fictional Threshold Power). So its not death cycling, but its just enough pain to know it's there and bothering you but it's something you can sustain for about an hour with out dying.

Basically its the building blocks of your endurance, while getting in some leg strengthening at the same time. So as I am having a tough time just trying to keep this sweet spot level and I am struggling. In my head it's like being super man, and something in my garage is Kryptonite, and hindering me from keeping my power. Needless to say I struggled for one hour on my trainer begging for it to be over with, because I'm disgusted with myself. I guess a lot goes through my mind, about CMT. Every time I can't keep power or I am doing horrible I think that CMT is the cause and I will never get the power I used to have. Am I the only one who has those thoughts? Then I have to tell myself that I am crazy and that it was that whole two months I took off from any training, and all the glutting eating I did in that time as well. Though I have such a great support group, they're always there to help me get my mind right and get focus back on training. My BFF/coach, is always telling my that there is always peeks and valleys. So my question to him is when will I get back on my peek? Because I am tired of being in this valley, a VERY big valley at that.

I didn't let it get me down, I am not a person who gives up, though I do get upset at myself, and I tell myself that I have push harder next time. I knew when I decided that I was going to train for an IronMan that there was going to be a lot of rough days, and honestly I'd rather get rid of those rough days now in the early stages of training than 10 to 11 months from now.

Anyways I the past two days I did manage to survive and get past those two horrible days. Tomorrow will probably be a gym or work out in my coaches garage. I definitely need some gym time, since I am trying to cut weight more. Speaking of cutting weight, I really had a good talk with my Coach, in regards to my BAD eating habits, One of my problems with food is portion control, I tend to get more then I am supposed to, but I am Hispanic and it's in our blood to pile tons of food on our plates and gorge ourselves to death. Yea that's what I am going with and sticking with that. LOL Ok ok I do know better and I know I need to cut back Evan (AKA Coach). So I will start being more conscientious of how much food I am putting on my plate.

Well I think I am going to quit with my banter for the night, and forget about the last couple of days and move forward and work harder next time. So I hope everyone has had a great Christmas and didn't over eat like I did the last few days. As you can see I posted a couple of pictures, one of them is me begging for that one hour to be over with, and the other is what my power looks like. The yellow jagged line is me pedaling, and that solid blue line is where I am supposed to be.

DON'T JUDGE ME!



-Jaime

Post #1 after introduction

Well first and foremost I want to thank everyone who has already responded or is following me or just wished me luck on my latest endeavor. Like I said in my intro post, that I would give one hundred percent. So with that said, lets get on to the meat of this blog post:

So I guess I should at least give you a basic idea of what my current fitness level is. Well lets start out with what most men and women don't like to post, and that is current weight and size. So I am currently 258 lbs and I am  about 6'3" based on my last doctors visit I had back in November. yesterday was sort of my only REAL day off I had from working out. So I was kind of happy to have a day off, because the previous 5 days I was either doing a training ride with the guys outside or I was on my bike trainer or in the gym, so it was nice to have a day off. 

So at this present moment I have been trying to get back into the rhythm of cycling again. Winter time is usually when most cyclist do gym workout and spend sometime on the trainer. Well when I completed my last event in October, I kind of shut down everything... No working out, no bike trainer, NOTHING. I mean I went dormant, did I ever catch flak from my coach/best friend. So now I am paying the price for shutting everything all down. My cadence speed is way below what it should be, my average cycling speed has dropped, and I can't keep up with the group that I ride with. So now reaping what I sow. So now I have been mentally a mess, I have been super hard on myself mentally about how I could let that happen. but I know it's my own fault, and I know all I can do is work harder to get myself back to where I was back in October.

Right now I have been focusing on getting myself prepared for the rigorous training that is to come within the months ahead. I have all the bike stuff I need to work on cycling, swimming, I need to start paying for either gym pass or pay for the Master swimming course they have at the local highschool. Whats kind of nice is that right now my wife and her friend are both training for the 2015 Half IronMan Silverman Relay in October in Nevada. We are going to be a team, so of course my strongest event at the moment is cycling, so I will do the cycling part, while my wife will swim, and her girlfriend will do the run. I am supper excited for both of them, this is the first time they are entering any type of event. To get them acclimated to what it is like to do a relay, we just did a sprint triathlon  this month and it was a blast! My wife never had a chance to get in the pool to swim some laps due to not having time, you know life gets in the way. Yet she did awesome and I am super proud of her. Her girlfriend is a workout nut anyway so she took to running like a fish takes to water. Needless to say it was a great day and they all got finisher medals and a t-shirt.

At this present moment I am having a bit of concern about the running part of the IronMan. I am currently trying to work with an orthotic group to find me a pair of AFO's (Ankle Foot Orthotic) that can ultimately hold my weight while I am running. I am not sure if they are going to be able to help me. If you have any suggestion or know of a orthotic that is good for running let me know. I really can't start any type of training for running until I get a pair. Walking I tend to trip as I walk, but it gets worse when I start to jog or run, especially when my legs get super tired.

Well for today it is Christmas eve and my family gets together tonight and we all eat like pigs, well I am going to have to control my temptation to do that. I will though try to get in some time on the trainer, I need to at least get an hour worth of sweet spot training. Oh I guess I can tell you what I use for training on my bike before I close today's blog out. Anyways for those who just watch a video and spin on a trainer that's cool and all, but I just can't do that. So my friends and I use TrainerRoad.  Click on the link and check it out! We also incorporate that with the Sufferfest Videos, it's a great tool to have when training. As I learn new technique or new tools I will be happy to share them with you, and you can let me know what you think, or if you have any tips or tools you use to train with let me know!


Well guys I thinks that is more than enough to write about for today, I promise to be more straight forward about my training, but because of the holidays it really hard to talk to much about training since there is so much family life going on at the present moment. Anyways I want to wish everyone a happy and safe holiday.


Chat with all of you soon! Don't forget to follow my blog and please let others know about my blog!


OH CRAP one more thing! I started a Twitter feed so you can follow me @CMTandTriathletes

Happy holidays everyone!

-Jaime

Who am I

2014 IronMan Relay

Hello and welcome to my Blog, my name is Jaime Salas and I wanted to take a quick moment and basically say who I am and why I am starting this Blog. Well like my beginning sentences says my name is Jaime Salas, I am 40 years old. So why start a Blog at this age and for what reason? Well this Blog is to inspire and maybe help those with have Charcot-Marie-Tooth find a place they can hang out, chat about the disease and get some info all at the same time. Yea, I know it sounds like something someone made up and is trying to make money off of some fictitious disease. Well it's real, its REALLY real. Charcot-Marie-Tooth is a debilitating disease that effects the nerves. The name comes from three different doctors who discovered the disease in 1886. Yea it's that old!

Here is the short short version of how it effects people with Charcot-Marie-Tooth or CMT. CMT  basically is a neuropathy heredity disease, passed on from generation to generation. Though it is mostly prominent in males, not to say that girls can't get it, they just have a smaller chance of getting the disease at birth. Though keep in mind CMT can effect people in many different ways. Here is the best way I can explain it: There is a sheath that coats the outside of your nerves called Myelin. The purpose of myelin is to basically help send a signal from your brain to your muscles to fire off. Meaning to move a specific muscle, well this Myelin sheath the coats our nerves is either non existent or is slowing going away as we start to age. So when we ask our leg muscles to lift our leg or point our toes so we can walk properly the response from our muscle is very little or no response from our legs at all. So we do a lot of foot dragging, and tripping over things, as well as having balancing problems, as well as problems with our hands.

Some people think of it as drop foot or or Charcot Foot, they have identical symptoms, but they are two totally different disease. CMT doesn't only effect the legs or the feet, but can effect hands as well. Their are other cases out there that CMT not only effects the extremities, but can start effecting the lungs and other vital organs from what I hear are extreme cases. So in short CMT can be a very crippling disease. If you really want to dive in to the in's and out of CMT click on this web link to get more detailed information. NIH Charcot-Marie-Tooth

So now that's out of the way, let me explain a little bit more what I plan for this Blog. To me Blogs are not just informative pages, but it is for those people who want to share their experience with other like minded, or with others who are going through the same thing and who can empathize with the writer/blogger.

So my blog is for those of us who are not sitting on our arses and working to keep our selves healthy and mobile. CMT has not slowly started to effect me. One I was young I was super active. I was a soccer player, I used to love to run and basically do everything a young boy/young man loved to do. I never had any real problems with my legs as a young adult. It wasn't until my later years, and I would have to guess in my mid to late 30 that CMT started effecting me. To top things off in my messed up gene pool, my family has a history of Type II Diabetes. Well yes you guess it I was diagnosed with type II diabetes about a year and 3 months ago. So I obviously I had to make a change in my life if I wanted to keep living. So I did! I changed my diet for the diabetes, and then one of my best friends in the whole entire world had introduced me to the world of cycling.

Since that time I have lost close to 50+ pounds and have been living a much healthier life and I owe it all to him and my loving and supporting wife. Cycling has now turned into a passion of mine. To give you a small glimpse of my accolades in a one year period, I have ridden close to over 800 miles in one year. One event that I am super proud of myself, is that I ridden over 103 miles while climbing over 9000 feet of elevation in one of my local mountain areas. I have also completed a Half IronMan Relay where I cycled in the hot Nevada desert over 56 miles with over 4000 feet of climbing in 100+ degree temperatures. So as you can see, cycling has got a good firm hold of me, and I love every bit of it. I have done some swimming and a little walking since I have a bad tendency to drag my feet when I walk fast or try to jog due to CMT.

So I want to make this blog for those who are athletes or recreational swimmers, cyclists, and runners with Charcot-Marie-Tooth and talk about their experience from the first time you decided you are going to make that change in your life, to those who just found out that they have CMT and are wanting some advice, or tips for training. I want this blog to be for everyone who is just wanting someone to chat with about the disease and be with people who understand what it's like to have CMT.

What I am bringing to the table is that in 2016 I will be entering in my first EVER Ironman event. I have started training and I have until July of 2016 to prepare myself mentally and physically for a 2.4 mile swim, a 112 mile of cycling, and a 26.2 mile run. And I want all of you to be with me 100 percent of the way as I train and go through the trials and tribulations of all the mental and physical blocks I will have to over come as I prepare for my first ever Ironman event. I will blog everyday on what I am doing as well as post pictures all the way up to the day of the event.

Most importantly I want to hear from all of you on what your future goal is for 2015 or those long goals like mine in 2016. I'd like to hear what you are doing to train and what you are using for orthotics or other training devices or orthotics that can help others break those physical barriers.

Thanks again and come back and see how well I am progressing or see how I am struggling mentally and physically.

Thanks again for reading my Blog anddon't forget to following me!


-Jaime