Workout

I was always a fan of keeping my core tone, as much as many may think I never worked out, or ate a lot, the truth is I never really felt the need to tell people about it. Since todays craze in the digital, social media footprint is to let people know that you workout but to even show them screenshots of the workouts & maps to where they ran/walked/biked, here it is:

Be fore my 2013, I never really walked distances, aside from working trade show events. Anyone that has ever done that, knows you definitely get your steps in working at convention centers. I did however always worked on my core & used my own body weight to keep toned & my muscles active. As a Professional Graphic Designer, most of my time is sitting on my @ss, so it was always important to me to continue a workout routine & constantly stretch, ling after I left Alfred I Dupont in Wilmington, Delaware. I simply never shared it or talked about it, because it never even crossed my mind to do so.

It turns out that me keeping up with all of that was very beneficial when my spine started collapsing on itself in 2013. Keeping my core strong was a key element to my physical recovery & I have recently begun a new routine.

I started using an app called Just6Weeks. It has the features I was looking for, along with routines that can be scheduled & work at my own pace. I was looking to keep my core tone along with upper back & arms & this app works for me.

I also began weekly walks at the strongest pace I can, taking the longest strides to help maintain & gain back a strong tolerance in fatigue (ever since the spine surgery, fatigue in doing anything was a constant battle). For this I use MapMyFitness, it records my walks & shows maps, with information about each walk that help me improve each week. For me, it also is somewhat of a push because I can see where I was stronger & weaker which helps me make adjustments on when I walked, was the weather a factor, was the time of day a factor, washy pace quicker or slower, what was my distance, etc. etc. 

As anyone knows with AMC, proving theories wrong is what we do best & I am a firm believer that if you think you can do something, you are right … & if you think you cannot do something, well, you are also right.

This may sound strange but I also encourage myself before each workout session by telling myself things like :you got this” “you can do this” “own it” beforehand to set my mind in the mode I want it to be in.

I also do this trick for a workout where you are counting to a specific #, as in push-ups or sit-ups – I count down instead of up & towards the end I also think about & vision myself a few #’s ahead.

It sounds strange, I know for me though, it works. Before I know it, I have reached the goals of the #s setup by the Just6Weeks app. without feeling overly strained & I think it is a complete mental game. If I’m close to reaching the end count & don’t trick myself by thinking ahead or even beginning to count up, then those last few push-ups are the most difficult to accomplish. However, when I began using those mental tricks, as I was counting each one down, I noticed those last few were not as difficult as they used to be because I had already envisioned myself being there.

~ Ted H.


Here’s seek screenshots of what Just6Weeks shows you as you begin their routines & also a screen shot of what MapMyWalk displays:

Just6Weeks:

MapMyWalk:

Genetic Test – A Strain Of Escobar

I recently had a genetic test to determine which form of AMC I may be. Maureen Donohoe PT, DPT, PCS petitioned for me to have this genetic test through Bamshad Laboratory:

Aimee Schantz, M.Ed.
Research Coordinator, Bamshad Laboratory
Dept. of Pediatrics | Div. of Genetic Medicine
Tel: 206-221-3849 | Fax: 206-221-3795
Email: aschantz@uw.edu

It’s a very simply procedure, they sent a kit directly to my home. Some spit in a tube, sealed the container & sent it back. A few months later, the results were in.

Reenee transcribed the results below:

Your official gene is Two potentially compound heterozygous frameshifts in CHRNG: NM_005199.5:c.459dupA:p.(Val154Serfs*24) and NM_005199.5:c.597_598delCT:p.(Phe200Hisfs*97). We did not confirm inheritance however given phenotypic match these variants in CHRNG are likely causal. The (20 CHRNG genes appear to be the reason for this.

That translates to, you have a difference on your 2nd chromosome on the q end of the chromosome (2q37.1 ) that caused your type of contractures.

Your mom does not have that difference. 

You do not have the lethal version, in fact you have a very mild version because 2 very smart genetics (Dr. Hall and Dr. Bamshad) did not think you had it based on your respiratory status and your age.  They trusted me. Anyway, escobar is an acetyl choline disorder on the same area of the gene as myasthenia gravis. For those who have severe involvement, they do well with a drug called methimazole which makes people (and animals) magically stronger when they take it. You are not that person but if you wanted to google youtube videos of before and after the drug in dogs, it is pretty remarkable.

Your take home messages are that you are at risk of respiratory issues so if you get sick from a respiratory standpoint, it is important to address it quickly. My area of ponder is how acetyl choline works. It is a component in creating muscle contractions but is also something influenced with pain medication. I believe that is why you actually get worse when on pain medications.

Maureen Donohoe PT, DPT, PCS
Clinical Specialist at Nemours / AI DuPont Hospital for Children

Some interesting information to share, especially if anyone else is remotely close to my version. Plus, I think it’s good to share where this test can be done, for those that also want to find out how it may have happened to them. It also is really important for any medical physicians to have, moving forward, so that they can better treat myself/you.

All in all, my main reason to have this done, was to attempt to help anyone behind me to receive more information about this version of AMC. I would like to thank, once again, Reenee for petitioning me to have this test done. 

So, not only can I tell people “I am screwed” (I have 2 rods & 12 screws in my thoracic spine) when asked how I am (from people that don’t really know me) but I can now add “I am a screwed Cartel Boss of Escobar Syndrome” since Reenee has always said that I am the oldest she has ever met, in my position/version of AMC, so I have THAT going for me ¯\_(ツ)_/¯

~ Ted H.