One of the biggest challenges faced by us is that at face value, the degree of our disability is greatly underestimated. For example, when collecting change at a shop, a problem faced by me on the daily (times when I wish I could just leave the change without being judged, lol), while trying to tear a bag of potato chips when my friends simply can’t understand the fact that I can lift a very heavy weight from my fingers but why am I struggling with a bag of chips, lol, and the most annoying, signing a receipt for a parcel when the delivery guy thinks I am a lunatic who needs the luxary of a clipboard just to put my signatures. Big lol in that case, the delivery guy thinks maybe I suffer from OCD because I need the perfect angle and height to even move the pen across the paper.
This is very true! CMT is a hidden disease and from outward appearances many of us look "normal" (I actually look athletic - haha!). I had trouble opening the top on a bottled water in a meeting once and the guy next to me saw me struggle and said something about my "needing to get to a gym." That was annoying. Those tops are hell for us, pinching and twisting and made worse that they've opted to make them as small as possible.
Every once in a while I get my jabs in though. A friend of mine was trying to manipulate his keys with gloves on and fumbling badly at it. When I saw this I told him that's what CMT hands feel like "all the time!" He had an embarrassed look on his face when he said, "yeah - that's gotta suck." I said it does but honestly, it's the least sucking part. Many other symptoms are worse like the constant aches, cramps, and neuropathic pain, the breathing issues and shoulder and neck stiffness, the never-ending fatigue, etc...
It's an uphill battle to teach people what you're going through and how they could help a bit. Even just the other day at the doctor, I had to fill out forms to get some past medical records. I had printed out the necessary info ahead of time because my writing degrades so quickly, by the end of the form it's illegible. I told the receptionist this but she said to go ahead and fill them out. I argued that she'd not be able to read them anyway and all it would do is make my hands sore and tired but she didn't want to fill out the forms herself so she just told me to do the best I could. I tried. My writing grew illegible. The next day the office called me to see if I could just give them some phone numbers since they couldn't read the forms. I told them I had printed all the info out and they could simply look at that paper for the numbers. The lady on the phone apologized and we hung up. So yeah, exactly what I said would happen. Of course, they didn't hear it, didn't want to deal with it, and that leaves me (us) to suffer through useless and taxing tasks.
Welcome to the forum!
You know, product designers invest a lot of research in designing things that are ergonomically efficient. Means they design things (bottles, packets, doorknobs even pens) that are very easy to use for normal people. THESE DON’T APPLY TO US. I had a friend who gifted me a very expensive pen once saying that it is ‘engineered’ for maximum comfort, sigh. Now given that we are a very small minority and only fellow patients can understand us, it’ll take a designer who is a CMT patient and his endeavours to be profitable to cater to this very very small market. See the possibility of that happening? -helpless lol.
PS: I use thumb splints while writing, I use it in a very different way than how they were meant to be used (they are made for fractures). Now they don’t really help in the dexterity part but they prevent the thumb from cramping up. That’s great help given that I have to write 3 hour exams every 2 months (engineering college).
I have been in very similar situations. I went from braces as a child, to a walker, and since my 30’s a wheelchair. While I am certainly not glad to be in a wheelchair, I will say people treat me better. I still get comments and advice saying I could do…if I tried harder. There are also people that refuse to belive that services don’t exist, are poor, or extremely expensive. Even in the United States, if you don’t have supportive family and friends,and an income source, it is very rough.
Education is important, but employers are less tolerant than scools. Try to develop close relationships and be as social as possible. You will need people for emotional and practical support.
The emotional strain is at least as bad as the physical. When I had braces I saw doctors often. Now that I’m in a chair I rarely see a doctor, and physical therapy is just basic exercise from what I have experienced. Occupational therapists just gave me a catalogue of expensive gadgets, a handy friend is better.
Oh, the Dragon voice activated software is less expensive, and better quality than in the past. I don’t know about in India, but here, if a doctor backs it up, they will give you extra time for exams.
When it comes to solving mathematical engineering problems, only the hand can translate whatever’s going on in your mind. Same reason why writers aren’t provided for math exams. They let me record mp3 audio for other subjects though, it’s less cumbersome than dragon when it comes to exams.
Doctors have already backed it up. And, quite literally, anything is possible in India!! But when it comes to government procedures, social welfare is very very very mismanaged. My application for disability certificate, which will entitle me for extra time, is still floating around in the government labyrinth!!
Thanks for the insight into engineering and math, I didn’t think of that, since my brain does not work that way! It must be very frustrating to be waiting for the certificate, it was quite frustrating here, where schools are fairly responsive.
Engineering seems like a good field for someone like us, with CMT. Especially since India is so advanced in the area.
Personally, I am disappointed because while with support I was able to get through school, getting and keeping work is a huge struggle. I feel trapped by my body (as I’m sure most of us do).
Hopefully you will be able to find a good employment fit.
It is very nice speaking to you, I hope you are coping with your injured foot okay.
water bottles are my down fall, happy to have a wife who can open them, before I throw it.
I build cars for Chrysler, I deal with nuts and bolts and large pieces, the big solid things are a breeze, 7mm nuts are a PITA.
I've noticed that when drinking a bottle of water or can of pop I need to curl my baby finger under the bottle of the bottle or there is a good chance I'll drop it.
Thanks, great talking to you too. Yep really hoping to find a good employment, hopefully R&D or design engineering coz i am good at that stuff and it doesn’t even involve field work. I had my first experience working in the field at TATA Steel as an intern. It was good but the manager always tried to keep my away from conveyer belts and furnaces coz of the obvious chance of injury.
You should really try those custom splints I just uploaded. They’re a great help. You actually land on your heels and people don’t even notice the awkward walk ! Makes you feel ‘lesser’ trapped in your body. Your calf muscles start working out more as the drop feet kinda prevents you from walking as frequently as one normally would.
The injury is mostly fine now. The splints serve a dual purpose, they even support the foot in an injury for faster recovery.
Thankfully I didn’t need hydrocodone (vicodin) this time. It’s really hard to work with them and you actually feel happy about it, lol!
Water bottles and other tiny stuff, sigh! I actually use a huge clamps for driving screws. I clamp a huge handle to any timy screw driver. Works like charm. You see, we actually have good enough strength in our forearms but the fingers bottleneck it as there’s no gripping strength.
Over time I’ve collected a bunch of ‘occupational’ accessories in my backpack. These involve pliers, wrenches, laces etc. Pliers are very handy in opening locks and stuff while laces help me get to those hard to reach areas like VGA cables. You’re probably wondering ‘how?’. You see, VGAs have those tiny cylindrical screws. It’s a nightmare trying to loosen them. Just spool the laces around the cylinder and pull the end of the lace. (The cylindrical screws will unwind the lace and loosen itself, voilà. Works like a charm!
They are a lot of other tiny DIY ‘hacks’ that make life easy and will probably get you in trouble at airport security, lol. It’s happened though!! And then I had to explain, sigh!
Regards , keep well
I'd love to see a picture of the bottle opener gadget, I'm thinking of something that i can use to open them. Currently I can still use a piece of rubbermaid mats, which are tacky enough to hold onto bottle cap and let my hands to just twist.
thanks for info!