If I were conducting an interview about CMT, and you were given a segment of time, what would you choose to tell the world about this genetic disease, so they could have a better understanding?
OMG Susan. Where would I even begin on that one! I would be there all day :-)
I guess it would be that it isn't funny,after awhile,when you constantly fall down.Its humility at its core.Compassion, empathy,and understanding would help.Its a disease that has no cure and is life changing to those that have it,and the families that deal with it.
Thanks for your reply, mrmustard!
Come on PCM, here is your chance to raise awareness!
CMT, should be taken more seriously by medical professionals and sufferers wouldn’t be so much in denial. I remember when my daughter was diagnosed as a toddler, I was told by a professor in neurology, just to take my daughter home and live with it. My daughter will be 30yrs old next year, most of her life, she’s suffered in silence. Her two children also have CMT, hopefully they won’t suffer. In the same way as their Mum did. Although, they do appear to be receiving more medical support and my grandson who will soon be 9yrs of age, is being supported in school. So hopefully the awareness will grow within the education community also.
It's not contagious! It affects us all differently. We can still lead productive lives according to our own INDIVIDUAL abilities.
Its a Birth Defect of the chromosomes; either duplications, deletions are mutations. Our DNA is a different coding so our map looks on the surface to be a "normal" person but we are not "normal"! Our wiring is different which makes us function different. I might look strong, and as if I'm fine, but I'm not! On the inside, I hurt and I have lots of fatigue trying to do the simplest things! Expectations cannot be the same, but as Dancer Mom states we can lead productive lives, but we must be allowed to find our own pace and achieve what we can in our own time! Realize it might be different from one day to the next.
Men with CMT need girlfriends, wives and families, too, but solving the equation is immensely difficult.
It's pretty hard to develop romantic relationships when you are a man with genetic disease.
I can't comment on the difficulty for women, as I am not one.
But when you are supposed to provide, protect, and contribute good genetic material for procreation, as a man, one is often overlooked or even off the market, when one sees what being "on the market," demands.
I wish there were some statistics on this, as it seems like one needs to be Ryan Gosling, Ryan Seacrest and Superman, all at the same time to be second-date worthy.
My brother and my best friend can't even imagine a world where women don't throw themselves at men.
For men and women whose CMT manifested before marriage, how has it been for you?
Eric
Amsterdam Eric you make a Good Point!
We do tend to overlook that aspect; later as CMT progresses, it can and does affect your sex life, your functions in more than just your hands and feet! Muscle spasms are huge part of CMT sufferers, and well, quite honestly, isn't that what we wish to avoid setting off? Positions for love making and stamina can be an issue. So much is affected that many do not open up about, but it is something we need to bring to light; Again Awareness is achieved by asking and sharing!
You can private message if you need to discuss something you really don't want discussed in the group environment by share with someone who might understand and encourage.
~~~CM
Appreciate your candor Eric, I could not imagine. But certainly there are many who share your same issues(our).There are people for each of us. We all need hope and a promise.
I wasn't speaking so much about the mechanics of being in bed, I was referring to well before that.
It's hard to initiate relationships because you are handicapped, and while I don't blame them, women have lots of choice in men, and they don't have to buy into a lifetime of fewer things that can be done together. For example, walking on the beach is NOT enjoyable, nor is hiking.
Hiking and walking on the beach seem to be in every woman's dream package, but doing so for me is torture.
Then seeing the whole world seems to be the next thing, starting with Machu Pichu and thereafter on to the South Pole.
I don't mind traveling, but I cannot do "It's tuesday, so this must be Belgium."
So I wonder if other men and women have such problems.
Feel free to ask me what I have. I don't mind explaining.
It does not affect life expectancy. I expect to live a normal lifetime. It is not contagious, but it is inherited.
It is not contagious. You won't get it - in fact, you have to be born with it (like certain exclusive private clubs). It will get worse, but slowly.
There is no cure (yet!).
There are some things (like walking) I have trouble with, but many others that I don't have trouble with. You may see me walking a short distance without my cane, but I usually use by cane and sometimes a walker. Others with the disease use a wheelchair. I have CMT, but I don't suffer from CMT. People who walk downstairs behind me are the ones who suffer!
I don't mind joking about it. I am going to have it no matter what I do, so I might as well joke about it.
John
Like your attitude.I too deal with this in a open manner,not too seriously though, life is too short.
Amsterdam Eric,
Sorry, I wasn't reading into your comments but just adding in other thoughts as well; Relationships can be hard enough without adding in extra problems as you stated. It isn't impossible but, then you wonder when is the right time to talk about it, so you don't scare them off, before they get to know YOU; I like people to see me as a person, get to know me for who I am, not what I have not as a "crippled" or other wise impaired person; It's part of me, but its not ALL of me.
I wear long broomstick style skirts to cover my braces, so the braces aren't what's noticed,first, about me. I am not ashamed or try to hide the fact that I have a disease. But, it makes it difficult for people to see past it if it's obvious.
I had my disease present young, and some mild signs in my teen years, and though wasn't known or diagnosed at the time, was made fun of for my "prancing" gait. My husband married me at age 17,(he was 23) and had noticed certain odd things of how I held my pen and grabbed things like a knife or potato peeler "wrong". He also made comment early in our dating, "you don't walk right".
Had he known then, what he was taking on, I don't know if it would have affected his decision to marry me, and I feel if I had known I might have stuck with my original plan, to be a spinster school teacher and enjoy others children.
But, no one knew, until I was age 40, and I'd already had my three children. There are lots of things in life, we don't know how it will turn out, but to encourage you, there are still many out there who really look at the person as a whole and not all the trouble you "might" present or what you can't do.
As long as you are up front about the possibilities, and then proceed to concentrate on the "CANS" and be ABLE in all areas you can achieve, there can be someone out there for you; We are not an island and our creator created us to be units; someone out there is needing you to complete them and they will complete you!
Is it more of a challenge, YES! But, Life is a challenge and we all are born in the process of dying in the end! The Journey in between is what we must focus on!
I took a whole new prospective after reading and seeing the movie, "Tuesdays with Morrie" about a man with ALS, but what a life changing person he was for so many, even in his worst days, of being unable to feed himself, bathroom alone and many other things he lost ability to do! I highly recommend this read and movie to all in the groups. Our journey with CMT can be difficult, but as stated before, the attitude we choose to maintain can sure be a deal breaker!
~~CM
They made one called Barnadette about a woman with CMT. It is -not- uplifting. It presents a very sad picture.
And this was from Hereditary Neuropathy Foundation.
I haven't seen that one Eric;
http://store.cinemalibrestore.com/bernadettedvd.html Is this the one you speak of?
I will check it out as well; I have struggled with many things during my CMT. Much of which I continue to struggle with, and no HOPE of it getting better; so I do know difficulty; I guess I tend to carry with me my Father's urging "Can't never did anything til he tried".
I realistically am just as human as anyone and want often to "quit trying" but I guess, it is my family that deserves the credit for not "allowing me" to quit! So, yes, if it were not for the relatiosnhips of friends and family, I would not have a very pleasant journey! I wish you well, in the seeking of others and hope you do find that special person who can and will love you through the most difficult of times. It does make a huge difference with support! Don't get me wrong, I do throw myself "pity parties" often enough but it doesn't do anyone any good, least of all me! LOL
~~CM
Yes.
Eric
CM said:
Amsterdam Eric,
Sorry, I wasn't reading into your comments but just adding in other thoughts as well; Relationships can be hard enough without adding in extra problems as you stated. It isn't impossible but, then you wonder when is the right time to talk about it, so you don't scare them off, before they get to know YOU; I like people to see me as a person, get to know me for who I am, not what I have not as a "crippled" or other wise impaired person; It's part of me, but its not ALL of me.
I wear long broomstick style skirts to cover my braces, so the braces aren't what's noticed,first, about me. I am not ashamed or try to hide the fact that I have a disease. But, it makes it difficult for people to see past it if it's obvious.
I had my disease present young, and some mild signs in my teen years, and though wasn't known or diagnosed at the time, was made fun of for my "prancing" gait. My husband married me at age 17,(he was 23) and had noticed certain odd things of how I held my pen and grabbed things like a knife or potato peeler "wrong". He also made comment early in our dating, "you don't walk right".
Had he known then, what he was taking on, I don't know if it would have affected his decision to marry me, and I feel if I had known I might have stuck with my original plan, to be a spinster school teacher and enjoy others children.
But, no one knew, until I was age 40, and I'd already had my three children. There are lots of things in life, we don't know how it will turn out, but to encourage you, there are still many out there who really look at the person as a whole and not all the trouble you "might" present or what you can't do.
As long as you are up front about the possibilities, and then proceed to concentrate on the "CANS" and be ABLE in all areas you can achieve, there can be someone out there for you; We are not an island and our creator created us to be units; someone out there is needing you to complete them and they will complete you!
Is it more of a challenge, YES! But, Life is a challenge and we all are born in the process of dying in the end! The Journey in between is what we must focus on!
I took a whole new prospective after reading and seeing the movie, "Tuesdays with Morrie" about a man with ALS, but what a life changing person he was for so many, even in his worst days, of being unable to feed himself, bathroom alone and many other things he lost ability to do! I highly recommend this read and movie to all in the groups. Our journey with CMT can be difficult, but as stated before, the attitude we choose to maintain can sure be a deal breaker!
~~CM
AmsterdamEric, Relationships are important in everyone’s lives, so it’s important to share it with someone who will love and care for you unconditionally. My 30yr old daughter, who has CMT and her two children do too. Her partner and their Father has been not been very supportive to any of them, helping them cope with CMT. Truth is, he just doesn’t accept it, just so very sad. I love my daughter and grandchildren very much, yes it saddens me to see all three of them go through their lives with CMT. Although, in saying that, they also bring joy and happiness to my life and my husband’s. I do hope one day, my daughter’s partner will be more understanding and accepting, if not my daughter appears to be getting stronger emotionally and may just move on without him. What"s important is her health and welfare comes first, as does the kids. Love and caring makes life so much easier. All we can do is have hope, my husband and I are as supportive as we can be, and remain positive. Babbling on a bit here, but I sincerely hope AmsterdamEric, that you yourself find that special person who will accept and love you unconditionally. Wishing you well.
Hi Eric,
As you know, I don't have CMT, and my genetic diseases didn't show up in me until later in life, so I cannot totally relate to your situation. I'm sure it's tough on you to see your brother and cousin have women 'fall at their feet'.
I'm going to imagine that you are every bit a good looking as those guys, every bit as interesting, but perhaps not the jock or the dancer. Keep in mind that not all women are seeking those types, and as we mature, those qualities fall by the way side, being not-so-important.
I went to school with a guy who had some type of disability, if I knew what it was, I forgot, it just really didn't matter. He was the coolest guy, very interesting, and complimentary of others. He always had a great story of some compelling conversation starter. I don't really know if he was naturally this way, or if he worked hard at being so engaging. He used a crutch, I'm sure he probably should have used both, but managed on one. He was no more good looking than any other guy really, it was his personality that made him, the great clothes and good grooming didn't hurt, but he had such a winning way that the gals were just nuts over him. If we couldn't have him as a boyfriend, we surely wanted him as a friend, and his girlfriends were ALWAYS stunners!
I don't know if he was naturally so uplifting, or if he had to really work on it, but it was his warmth, wit and humor that made him such a hit. We just never really thought of him as disabled!
CM said:
Its a Birth Defect of the chromosomes; either duplications, deletions are mutations. Our DNA is a different coding so our map looks on the surface to be a "normal" person but we are not "normal"! Our wiring is different which makes us function different. I might look strong, and as if I'm fine, but I'm not! On the inside, I hurt and I have lots of fatigue trying to do the simplest things! Expectations cannot be the same, but as Dancer Mom states we can lead productive lives, but we must be allowed to find our own pace and achieve what we can in our own time! Realize it might be different from one day to the next.
Wow! I couldn't have said this better. You took the words right out of my mouth!