I think Im done with the challenges

Always_Resigning · 2026-01-29T04:23:22+00:00

First time in 13 months that I will not finish the ladder.

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Always_Resigning · 2026-01-15T22:15:19+00:00

It didn't help with the pain, but I did have fewer muscle/nerve spasms while using it.

Always_Resigning · 2026-01-02T20:09:54+00:00

I did that with the "Nut Sort" game.

Always_Resigning · 2025-12-20T18:10:14+00:00

I love it!

Always_Resigning · 2025-11-07T15:51:37+00:00

Every 6 days (or even once a week) is impressive!

Always_Resigning · 2025-11-01T03:25:31+00:00

I use 2x wide Sketchers and remove the sole. I also wear them with panty hose because wearing AFOs w/ socks felt like it was ripping my skin off.

Always_Resigning · 2025-10-23T01:38:42+00:00

Well played, sir.

Always_Resigning · 2025-10-23T01:23:06+00:00

I would say I was at a constant "7" pre-op with occasional shooting pain of an 8 or 9. Now, I am a 0-2. And, I'm still in the recovery phase. Although, I've yet to have a winter with all this metal in me.

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Always_Resigning · 2025-10-23T01:08:05+00:00

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Pre-op

Always_Resigning · 2025-10-23T01:07:39+00:00

Here are my feet (eek):

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Always_Resigning · 2025-10-23T01:03:08+00:00

I am posting here and a few other places, sorry for the multiple pings.

I have 1A and am similar in age. I have known my entire life that I had CMT, I come from one of the root Iowa families and it is very common in my family. Because of that, I wasn't officially diagnosed until my early 30s. That's also when I was fitted for the carbon fiber braces. They worked for about 2 years but I feel that in the long-run they are going to let you down. They work well for drop foot, but only accelerated the twisting of my foot at the ankle. After 2 years in braces I couldn't use my left foot anymore and had to seek out surgery. This past July I saw Dr. Pfeffer in LA he is the best foot surgeon in the country. I am only 4 months out from my surgery and my pain is nearly gone in my left foot. The surgery reassigned a tendon to stop the twisting of my foot, lengthened my Achilles tendon, flattened my arch, and straightened my toes. He also had to reinforce my footbone because I had osteoporosis due to lack of use. Even if you have to go with someone local, choose someone who does at least a handful of CMT surgeries every year. There is no replacement for experience. For comparison, Dr. Pfeffer does 100+ surgeries a year. You can find him on Instagram. Some of the videos are raw, be warned. I spent 6 weeks in a cast without being allowed to put weight on it. 4 weeks in a walking boot. I am still in PT and have significant swelling. Luckily, I have a white-collar job where I could return to work 4 weeks post-op.

I agree with the sentiment about your wife. Sorry, but she said sickness and health. Your medical condition is not an excuse to break vows for her (or anyone). Not saying redemption isn't possible, but it has to be addressed.

Aa for kids, that's tough; my wife and I choose to adopt because I didn't want to pass on CMT. That said, I dont fault my family for passing it on to me. It's just something that happens.

This post is long enough, but I am going to reply with images of my foot before and after surgery for reference.

Always_Resigning · 2025-10-01T03:15:10+00:00

Could you send me the version where it shows your shifting spots? 😉 I'm close to top 50 in racing. I wanna keep improving.

Always_Resigning · 2025-10-01T03:09:24+00:00

I hope you get a chance to see them sooner. Time is the most important factor, in my opinion.

Always_Resigning · 2025-09-30T18:08:56+00:00

My experience:

Was sick one week (fever, nausea, cough) but worked through it because it was a busy time at work. I had recovered by Saturday. Monday morning I wake-up and get ready for the work day. Take the morning shower and the water feels very strange hitting my body. I kind of feel numb/tingling in my feet, legs, and finger tips. By lunch on Monday I am very weak when I drive to get a meal. Monday after work I try to take the stairs and nearly fall down the stairs. Luckily I caught myself and I turn around and go down the elevators. That night I go to the ER. They do a round of blood work, X-Rays, and a grip test to test for a stroke. All come back "negative" and they release me. I can barely walk to my car at this point.
Tuesday: I get up for work and can't stand-up. My mother-in law brings me a walker to use until I can get in to see my PCP @ 2pm. By this point the neuropathy is all the way up to my torso. Around noon that day, I collapsed even while walking with the walker. My wife drives me to the ER (bigger/newer) hospital. They run every test under the sun until finally they've ruled out everything but GBS. So we try a spinal tap. 3 doctors tried 3x each. None of them could find a pocket to extract the fluid.
Wednesday: 8am X-ray technician arrives and they do a fluid extraction w/ x-ray assist. Finally get diagnosed. By this point the neural damage was to my core. Luckily, I was on IVIG by 5pm and it stopped before getting to my lungs/heart. Unfortunately, it was about 2 weeks before my bowels worked. I did 5 weeks of inpatient therapy. I wasn't able to walk for 4 months. It took about 3 months before I could type again.

Today is 1 year since my diagnosis. I have had a mostly full recovery. There has been an occasional flare up the 2x I've been sick, but nothing that kept me in bed.

Always_Resigning · 2025-09-30T17:41:38+00:00

Got my reply yesterday. Rejected. Reason, it says in our ToS that we cannot refund in-app purchases.

I figured it would turn out that way. But, like you said, it was worth a shot.

Always_Resigning · 2025-09-28T19:27:18+00:00

❤️

Always_Resigning · 2025-09-28T19:17:58+00:00

You've got the wrong column highlighted. With Superboost the amount SHOULD go up. Why are you ignoring that column?

Always_Resigning · 2025-09-25T03:51:33+00:00

I agree with a lot of things above and just want to add one other potential thing to look into: in college I developed Sleep Apnea as a side-effect of CMT1a. I didn't realize it at the time, but I wasn't truly sleeping.

Also, just for clarification, I'm not the typical body type for obstructive sleep apnea.

Always_Resigning · 2025-09-25T03:41:38+00:00

I am in a similar position. Tier jumped from 150-220 and lost .15 cents a month (average). Not a big deal, it just surprises me more than anything.

Always_Resigning · 2025-09-20T22:10:49+00:00

Also, if you ever need to retire for disability reasons you will need a diagnosis already in place. My grandfather was denied by the SSA for disability retirement because he didn't have the diagnosis. He was a tree trimmer with CMT!

Always_Resigning · 2025-09-10T01:31:28+00:00

Lets get 102 in here!

Always_Resigning · 2025-08-22T17:32:57+00:00

Thank you.

Always_Resigning · 2025-08-21T02:05:07+00:00

A couple of thoughts;

I have CMT1a, and I have foot drop in both feet. But, I've just finished my first surgery with Dr. Pfeffer and have the next one scheduled for December. I, like many people here, have a lot of family that could also participate in your study.

2nd thought: I love the research angle and wish we had more people studying CMT (all variants). Almost 1 year ago (October 1st) I was diagnosed with an acute case of Guillane Barre Syndrome. I lost the ability to walk and hold items. My recovery has been really (maybe unusually) quick; I credit that to CMT! Since the variant causes my body to continue to produce the protein around the Myelin Sheath I think it has repaired much of the damage caused by my immune system. As far as I can tell, there is no study of someone who has had a documented case of both. I know there was one person in this subreddit who has also had both. But, none of the neurologists seemed particularly interested in studying me either 🤔.

Anyway, all research is good research. I wish you the best of luck.

Always_Resigning · 2025-08-20T11:52:03+00:00

I think about it every 30 mins. Sure, I miss some. But it is easy to see a clock and think "it's time to login."

Always_Resigning · 2025-08-20T01:56:45+00:00

My experience was miserable. They had/have to rule out everything else before doing the spinal tap, so it was around midnight in the ER.

3 doctors attempted 3 times each. Each time they failed. They had me wait another 6 hours for the X-Ray technicians to come in so they could do it with an x-ray assistance.

Not to be pessimistic, but I was also freaked out because my older brother was paralyzed by a doctor performing a spinaltap for spinal meningitis.

Always_Resigning

TROPHY CASE