CMT Awareness Month is actually almost over, but there is still a little time to spread the news about the most common inherited peripheral neuropathy that no one has heard about! Try saying that 10 times fast! I am writing this not for sympathy, but more to bring light to what CMT means to me and for those who know me. So many people think that it isn't a big deal because it is one of those diseases that you can't see sometimes. Even with CMT's affects on the hands and the way someone walks; others seeing it may assume it is drunkenness, or just they way that person walks.
I shared that I had gone to physical therapy in April to try to save what muscle I do have left in my feet and hands and was given exercises to do. I think like most with CMT I have one side that is worse than the other. My left foot has always shown the symptoms worse than my right foot and my right hand is more affected than my left one. I was told that at least with hands your dominant hand becomes weaker faster because we use it more and that stresses the nerves and causes more damage to them. Physical therapy can be used to help keep the muscles you have left and not to really gain new muscle because with Charcot Marie Tooth the nerve signals are not reaching the muscles that are already atrophied from the disease.
At the end of July, I managed to fall because I was not able to pick my left foot up far enough to keep my toes from catching and thankfully it was outside on the ground. I dusted myself off and got up and went into the house. Since the CMT is affecting a lot of muscles in my body it means my joints aren't as protected and I can dislocate or break bones easier. Also, since my back/neck muscles are affected I can injure my spine easier which is what I ended up seeing a doctor for in the first part of August. I had sciatic nerve pain that was intense and the chiropractor seemed to not be able to get under control. An x-ray was done on my pelvis and lower spine and it was ok so no breaks--the infamous curve that was scoliosis was there so maybe with the fall it irritated the nerve? Or was it CMT starting to affect the nerve? Neurontin and steroids were prescribed and instructions to take pain meds and muscle relaxers were given and I was sent on my way. A third fall happened for the same reason; that left foot just didn't want to come up off the floor! That time I could feel it jar my whole spine and the next day my body felt like it had been hit by a truck! I called the doctor and she suggested trying physical therapy again. I also had to have more x-rays done to make sure that I didn't break any bones in my wrist since it had been hurting; luckily it was only tendinitis!
An appointment was made for physical therapy and I went expecting to go through the motions of exercises and be told to come back in a week. That isn't what happened. Within minutes I could tell that something was much different from the last time I had been there. The look on the physical therapist's face told it all. All he could say about my left foot is "it's so weak" as he shook his head. My right foot still has good strength, but the left one had gotten worse since April. He said he was sorry and he couldn't help me anymore and he said I needed an orthotic which at the time I thought meant a foot orthotic that goes in the shoes. I had told him that they didn't help much and he said "no, not that kind of orthotic, an AFO." He then said Madonna Rehab would be able to set me up with an AFO (ankle foot orthosis) and possibly could try another form of therapy so arrangements were made to go there. I went to my appointment at Madonna and when through the same routine of having my strength measured and seeing that look. I tried on two different types of AFO's and then it was decided that a spiral model made from carbon graphite would work the best and that they couldn't offer anything else in way of therapy. They did have a possibility for therapy, but the reality is that once the muscle is gone it can't be brought back with this disease and I knew that. The hardest part was telling the physical/occupational therapist that I knew there wasn't anything else that they could do. It was a moment of "I know this is happening and now others are verifying it." A very difficult thing to do!
I then was told were I need to go to be fitted for my orthotics and AFO and I had to hop in the car and drive over. I managed to get there and see that there were parking spaces for Hanger patients which were on each side of the wheel chair ramp before the actual handicap parking places. I don't consider myself handicapped by any means, but there was no other parking to be found so I pulled into one of the spots. I can't tell you how badly I felt taking a parking spot that was even closer than a handicap spot! I made arrangements to come back in a week and be fitted and when I returned it didn't take long to find out that my feet were obviously in poor shape thanks to CMT. The computer image of my new orthotics said it all. I was told I am basically walking on "ice skates" that the points on my feet making contact with the ground is that small and anything I may step on will throw my ankles out--that explains the ankle sprains! The orthotist also called my arches "honking arches," they weren't the highest ones he has seen but pretty close! He also pulled out the AFO I would be wearing when I needed too and got that in my shoe. I walked around with it and was sent on my way needing to return in a week to pick up my new orthotics. By the time I had gotten home my ankle was rubbed raw from the AFO so that meant another trip to have it worked on.
On Tuesday I picked up the orthotics and had the AFO ground down to fit better and everything was crammed and shoved into my shoes. I walked around the office again and could tell my feet were supported and that all of my joints that had settled into their positions from CMT, had been re-awakened so they could shift back where they are supposed to be. I could tell my knees and hips were not to happy about it! I was so happy to be home so I could get my shoes off! When I am home I wear my crocs and when I go out or become fatigued I wear my shoes with my AFO. The AFO is made so that when I walk I am picking my entire foot up so I don't risk tripping over my toes since I don't pick them up. It also has a design that acts like a spring so that walking is easier and not as tiring. Some people with Charcot Marie Tooth become fatigued because the body has to work harder. Everone's muscle groups are designed to do certain jobs and when the smaller muscles atrophy away the larger ones are forced to take over the work, but are not designed to do it which stresses them.
This is where CMT has taken me. I would be lying if I said it doesn't affect me emotionally. I know that there are many others in the same boat who have to tell their children that they can't run around with them to play, that today is a bad day mom/dad doesn't feel well, and the worst part is dealing with people who don't understand and make comments like "why do you have that brace on?, did you hurt yourself?" and my favorite "It must be rough to stay at home all day and be able to nap!" They don't understand that I would love to have a career and work long days again! I would love to have a normal life! I know I am not the only one who deals with this either and my post is for not only myself, but family members, friends, and other wonderful people all over the world that have to face the most misunderstood disease there is! I know how blessed I am to have so many wonderful people in my life and if you took the time to read through this I want to thank you! Sharing what CMT is like brings attention to not only this disease, but makes people think about others when it comes to illnesses. Understanding goes a long ways!
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