I appreciate your advices and guidance to help other people who have same issues, you're doing a great job. I was struggling with cmt when I was 20, cause I forced to stop My activities, I used to play football in my childhood till I got something like a broken in my knee by falling on it, and then My habits has been changed I started to producing music and writing songs, then My activities from walking to running started to be harder and harder, I started to feeling tired and gonna be Falling in any step, but when I get 22.. that's have been changed I started to getting closer to my god and asking him to be better, I started to praying at home for a month then I started to go to the mosque 5 time's everyday, after 7 months i was be able to talking some of my friends in a tour showing them my country and I climbed up a mountain with them, and that's was one of my favorite year's of my life, I also started to learn how to swimming and practice it. I always thanks god and I remembering his word's that helped me a lot to being positive, there's a verse in Quran when God almighty says { On no soul doth Allah Place a burden greater than it can bear } that's mean.. that God who created you to test your patience and believe, he wouldn't but you in a challenge that bigger than your ability, he wants to tell you that everything is under your control, and he told you how to deal with or to reacting over it as well. and this hadeeth from his last prophet Muhammad peace upon him Will explain it more, he said: "How wonderful the affair of the believer is! Indeed, all of his affairs are good for him.This is for no one but the believer.If something good happens to him, he is grateful to Allah, which is good for him.And if something bad happens to him, he has patience, which is good for him". And God rearward believers in their disease, as The Prophet said,“No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that.” And in another hadeeth Allah’s Apostle said,“Yes, no Muslim is afflicted with harm because of sickness or some other inconvenience, but that Allah will remove his sins for him as a tree sheds its leaves.” Sorry for the length and sorry for My bad English 😅 I asking God to bless you 🙏 and be patient 👍
well done Bethany! how inspiring! IT is so easy to make excuses that because I have CMT- say to myself 'im not going to walk that far it is too far'. it is do-able; just uncomfortable. well chosen words Bethany! There are so many people that doubt us and its frustrating! Maybe this makes me more determined to show them they are wrong.
Hi Bethany. I am from the UK and finally I have found someone is just like me. I see people who have CMT 1a but is not effected in the same way has me. I think you are so brilliant. For many years I felt alone with this condition and isolated. I admire your courage and confidence to go on this platform and talk about your condition, you are amazing and I will look forward to seeing more videos :)
I've never been looking for a reason not to try. The wear and tear on my body because I had and raised 4 + kids and took care of my home and family has taken a toll and has resulted in many broken bones in my feet, at least 6 a totally collapsed hip requiring total right hip replacement at age 46. Also broke my femur below that implant 5 years later and now my left knee is completely messed up from constant falls and an uneven gait. The surgeon I saw was afraid to operate on it. That Neurologist may be trying to save someone from going through what I have been. They often deal with people who have walked on these damaged limbs for many years. I think we should do all we can do every day we can but keep in mind that the bones and joints aren't meant to operate like ours often do and will wear out at a younger age. I am 64 now and I am in terrible pain pretty much all day every day but I still do laundry and house cleaning cooking , all those types of things but it is extremely difficult for me. I have to hire help. Keep that chin up and keep pushing forward. Only you know what is worth it for you to push through. Be blessed
I have CMT1A, in retrospect I had symptoms from a young age - slow runner, poor coordination, etc. By the age of 17 I was using a wheelchair. You can check out my book How Should A Body Be? on Amazon if you want the whole story :-)
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I appreciate your advices and guidance to help other people who have same issues, you're doing a great job.
I was struggling with cmt when I was 20, cause I forced to stop My activities, I used to play football in my childhood till I got something like a broken in my knee by falling on it, and then My habits has been changed I started to producing music and writing songs, then My activities from walking to running started to be harder and harder, I started to feeling tired and gonna be Falling in any step, but when I get 22.. that's have been changed I started to getting closer to my god and asking him to be better, I started to praying at home for a month then I started to go to the mosque 5 time's everyday, after 7 months i was be able to talking some of my friends in a tour showing them my country and I climbed up a mountain with them, and that's was one of my favorite year's of my life, I also started to learn how to swimming and practice it.
I always thanks god and I remembering his word's that helped me a lot to being positive, there's a verse in Quran when God almighty says { On no soul doth Allah Place a burden greater than it can bear } that's mean.. that God who created you to test your patience and believe, he wouldn't but you in a challenge that bigger than your ability, he wants to tell you that everything is under your control, and he told you how to deal with or to reacting over it as well.
and this hadeeth from his last prophet Muhammad peace upon him Will explain it more, he said: "How wonderful the affair of the believer is! Indeed, all of his affairs are good for him.This is for no one but the believer.If something good happens to him, he is grateful to Allah, which is good for him.And if something bad happens to him, he has patience, which is good for him".
And God rearward believers in their disease, as The Prophet said,“No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that.”
And in another hadeeth
Allah’s Apostle said,“Yes, no Muslim is afflicted with harm because of sickness or some other inconvenience, but that Allah will remove his sins for him as a tree sheds its leaves.”
Sorry for the length and sorry for My bad English 😅
I asking God to bless you 🙏
and be patient 👍
well done Bethany! how inspiring! IT is so easy to make excuses that because I have CMT- say to myself 'im not going to walk that far it is too far'. it is do-able; just uncomfortable.
well chosen words Bethany! There are so many people that doubt us and its frustrating! Maybe this makes me more determined to show them they are wrong.
Hi Bethany. I am from the UK and finally I have found someone is just like me. I see people who have CMT 1a but is not effected in the same way has me. I think you are so brilliant. For many years I felt alone with this condition and isolated. I admire your courage and confidence to go on this platform and talk about your condition, you are amazing and I will look forward to seeing more videos :)
Awww thank you for this comment Donna, this means SO much to me! I hope to do more videos in this new year ❤️❤️ You're definitely not alone in this!
I agree also you have a great Outlook
About life very positive...
Society made me a little hard over the years with CMT
Thank you Swanzilla ❤️ I'm so sorry to hear that. We all have our protective mechanisms.
So true people want to protect us from their fear
100%. We all project onto others sometimes!
You are gorgeous, from the inside-out ❤️❤️
Well aren't you just the absolute sweetest!! ❤️ Thank you Antonia, you've made my day xo
I've never been looking for a reason not to try.
The wear and tear on my body because I had and raised 4 + kids and took care of my home and family has taken a toll and has resulted in many broken bones in my feet, at least 6 a totally collapsed hip requiring total right hip replacement at age 46. Also broke my femur below that implant 5 years later and now my left knee is completely messed up from constant falls and an uneven gait. The surgeon I saw was afraid to operate on it.
That Neurologist may be trying to save someone from going through what I have been.
They often deal with people who have walked on these damaged limbs for many years. I think we should do all we can do every day we can but keep in mind that the bones and joints aren't meant to operate like ours often do and will wear out at a younger age.
I am 64 now and I am in terrible pain pretty much all day every day but I still do laundry and house cleaning cooking , all those types of things but it is extremely difficult for me. I have to hire help.
Keep that chin up and keep pushing forward.
Only you know what is worth it for you to push through. Be blessed
Thanks for inspiring
May God give you more strength .
I'd like to know how we could contact you directly? I have CMT 1B.
Hi Tracie, you can email me at info@bethanymeloche.com
I have CMT2b it is more rare than 1A
Probably a lot more rare! I think 1A comprises at least 80% of CMT cases? So I'm not very special ;)
Hi! Could you tell a little bit more: like what kind of type of cmt you have? How did it start, in what age, what symptoms you experienced first?
I have CMT1A, in retrospect I had symptoms from a young age - slow runner, poor coordination, etc. By the age of 17 I was using a wheelchair. You can check out my book How Should A Body Be? on Amazon if you want the whole story :-)