We all have them, as you know, mine is spinal. What areas of your body has CMT hit the hardest and presented the biggest challenges?
I remember hammertoes, calves, hands, feet...
no particular body part for me really. I have problems with balance.
That's a big one, braylin's gramma! I was hopeful that your Doctors would have found a successful way for you to overcome this by now!
I am going to physical therapy twice a week AGAIN.....I just need to do my best to follow through at home and not fall back into the place of not doing anything because I am afraid to fall or I don't want to go anywhere because I don't want to have people see me "stagger" sometimes. I am my own worst critic but I have heard some sighs and seen some eye rolls from people I have been in public with and that just puts me back into "hermit mode". I have to learn to ignore them and just live my life no matter how hard it is.
Gaynelle, I understand. I do not have the constant problem with balance, but I sometimes fall around, limp a lot of the time, sometimes I kind of drag the left leg. When my back and pelvis are out of alignment, I cannot straighten up. Probably should have been on a cane years ago, but my wrists are too weak to hold up me up! I like shopping carts, and hang onto them! Sometimes I feel like I'm a bag lady in training, but I'M OUT AND ABOUT!
Once in a while someone will hit a nerve, but most of the time I just don't care, I can usually strike up a conversation with anyone. I'm usually so happy to be out of the house, I'm glowing, and I make a joke before anyone else can! Why not!
You are such a lovely lady, I hope you can disregard the ignorant! YOU are the one that matters! Wish you weren't so far away! We'd take them on together!
BTW, falling at home alone is a very real concern, and you are wise to be careful there. Falling is never good news, no matter who's there!
Sending some love your way!
Your friend,
Susan
Susan, I am learning at the ripe old age of 57 to just ignore it, but sometimes it just triggers old memories of being bullied as a kid. I too use a grocery cart all the time at the store even if I am just getting couple of items. Just easier. Can you imagine the trouble we could get into if we lived by each other....the possibilites are endless AHAHAHA.
Love to you as well!
Gaynelle
Oh, I'm telling you, it would probably be a riot! ha! We could do shopping cart races, I know a big hill...you first, get in girl!
OH MY STARS......me and hills don't get along so I would just lay down and roll down cuz I know that is how I would end up...looking like a barrel heading down the hill. What a visual ahaha
Make that 2 barrels! There you go Ben's Friends barrel racing! I can just visualize this! HA!
My biggest problems are legs. I just stumble. I can't walk a single step without braces. I've fallen too often just like a stick on my side and backwards, crasch.. I hope I'II not broke my hips. I must be very careful all the time.
My spine is also one of my biggest problems. So many discs out and stenosis . My left leg is like a limp dishrag! I walk on my toes on that foot. What a picture this paints. My hands,despite repairs are claw like and very hard to straighten . My balance is off and a shopping cart is my best friend,too! Life is a challenge everyday. I try to stay positive. My ShihTzu Bella has been the greatest support for me! She is an ESA dog,so she helps me to get out. If Walking Dead needs a good walk on zombie,I’m your woman! I have that walk down pat! Lol!
Oh HM, I can tell you that you do not want to break a hip. I just went through this ordeal with my mom, and it was no picnic! Please take care with this!
I know it Karen! LOL, I have said the same thing, the perfect zombie, the walk down pat! My grandson and I joke about it! There are many days when I wouldn't even need the makeup! Just watch for me, I'm the one in the nightgown!
Okay Ladies, we just need to have a zombie meeting. I could fit in perfectly too. I think what I miss most is my independence. I was always able to go and do anything I wanted and I was the ultimate adrenaline junkie. I worked EMS, Rescue, fire and loved being free to do all that came with these. Now I need then to come pick me up. I like the idea of the cart races. That sounds fun. I use the wheelchair cart , can I still play?
Yup.....you can still play jnj2008......I know what you mean about the independence. I don't have a car and have to depend on others to take me where I need to go. I can't just go where I want anymore. I think I could handle around town. The town I live in isn't very big. I feel like I live in a prison sometimes...But when I go grocery shopping tomorrow I will think of these posts and have a good chuckle :)
We could be twin zombies! No need to provide Zombie walk lessons
Can you just picture this! It would probably make all of the news channels! LOL! You guys can get in on it too!
We would have to do it for charity or raising awareness or perhaps we'll decide on 'tips', I'll bring the bucket! LOL!
Now how cool is that!
My biggest issue is my left leg. I had surgery on it and it helped to get it in more of a correct position. After a few years, I began to again see my left foot, turning under and I tried to find tennis shoes that had a flat sole which seemed to help for a few years. A few years later and I began having difficulty again and the flat tennis shoes were not helping since the soles were too soft. I then discovered the New Balance "Roolbar" shoe and that has given me a remarkable benefit. I also have hammertoe on my left foot but that does not seem to create too much of a problem.
With these new shoes, I am able to again walk on grass without feeling like I am breaking my ankle or ready to fall down.Like many of you, I do take a cane with me occasionally and when going to a store, I always use their carts.
I pole vaulted when I was in Jr High School, landing in sand back around 1957. I was on the Basketball team as a Freshman but I had issues with ankle sprains. CMT was not recognized in me until I was around 56/57. My attitude is that no matter what life throws at me, CMT, A-Fib, or going bald, I will continue to look up, praise GOD and keep on going forward. I will use whatever I need to accomplish that and this site is a real encouragement to me. I cannot thank all of you enough. GOD bless and know that I am praying for all of you.