Charcot-Marie-Tooth Disease
Sex, Sexuality and Self-esteem
by Linda Crabtree, C.M., O.Ont., O.M.C., B.A., LL.D.
former Executive Director, CMT International (Canada)
with a section on childhood
by Patricia Levy, MSW, ACSW
Medical Social Worker and Family Therapist (Israel)

I've been going to write something on Charcot Marie-Tooth and how it can affect our sexuality, our sex lives and our self-esteem for a long time but it wasn't until now that members of CMT International showed much interest. Perhaps the reason why I'm hearing from you more often on this topic is because we are all getting bolder and asking our physicians about the problems we're having with our sex lives. Not too long ago most people would never even mention the topic...even to their physicians.

Now, when we ask, the majority of doctors will tell us that problems concerning our sex life couldn't possibly be part and parcel of CMT. Thankfully, we don't always believe everything we hear from physicians who might only know what they learned in med school many years ago and haven't kept up to date on CMT. We are beginning to learn from research done by physicians interested in CMT that there can be problems related to CMT that could possibly affect our sex lives and we have medical journal articles to prove it.

Also, we know that as we develop our sense of self and figure out who we are, our self-worth or self-esteem develops. Without a healthy sense of self-esteem it is difficult to feel good about yourself. People who have CMT could, if their symptoms are prevalent from a young age, have difficulty feeling good about themselves all their lives. It is difficult to make friends, to form lasting attachments and to love yourself if you feel you aren't as good as everyone else or are different when being the same means so much. We'll look at self-esteem as well.

A CHILD'S PERCEPTION by Patricia Levy

First we'll talk about sexuality in children, and then we'll speak further about the adjustment of a CMT child to his/her sexuality.
A lot depends on how parents feel about sexuality themselves. For instance, when I was growing up I spent my whole childhood dressing and undressing behind closet doors. The body was not to be seen, always clothed, except in a bathing suit which was the nearest thing to nudity that I ever came to. The word sex was unmentionable in our home and because "nice girls" were always covered, as a child, I felt guilty even about looking at myself - especially "down there." I had a brain but not a body and being on the "fat" side didn't help especially in a house where you didn't eat between meals and sweets were counted.

If someone had asked me as a small child, "Do you enjoy your body?," I probably wouldn't have had the slightest idea what they were talking about, much less the ability to express it.

As a child, I became a "klutz" for life because of all the falling down I did (it was only as an adult that I found out that I had CMT). I obviously wasn't going to be one of those dainty and pretty little graceful girls to be dressed up in beautiful feminine dresses. A princess I was not.

I know that, as a child, I never consciously knew or thought of my body as a natural thing. It wasn't until I grew up, moved away from home and married a man who adored my body (we won't talk about my mind), even today with middle-aged atrophied muscles and skinny fingers, that I could begin to enjoy and accept my own sexuality.

Child Development and Parental Attitudes and Interaction

Sexuality is the most natural thing in the world. It's in all of us from the time we are born. From birth to toddlerhood, a child is all feeling. He/she is completely involved with his/her body. For instance, when a baby cries, it signals us that is is uncomfortable due to hunger, pain, or a wet diaper. When a toddler stubs his toe, he folds up feeling his pain all through his entire body and he cries. The next minute, he may be laughing from tickling.

There is a lot of natural bodily touching from birth in children. They naturally touch themselves all over with curiosity and pleasure including the genitals and the anus. They learn responsive touching with Mommy and Daddy through love and affection and hugging. Their bodies and their emotions are all tied together into one interactive package of spontaneousness. If you've ever watched small children at play, they often talk with crude humor about bodily functions and sometimes touch themselves in intimate parts. It is social and cultural conditioning that gives them a message of whether bodily self-acceptance and comfortableness are permitted or not about their "wee-wee," "no-no," "private parts" or the "unmentionables."

For instance, if toilet training is forced too early on a small child by an ambitious parent or harshly enacted with such verbal punishments as being "bad" or "not a big boy/girl" or "on purpose," this can cause feelings of guilt, shame and self-doubt for the child and in his ability for self-control. For a CMT child, it might be just plain embarrassing and physically difficult to get clothes off in order to go to the bathroom. A child naturally wants to feel pride in himself and his body, not shame, and he/she often wants to communicate his/her natural curiosity through questions about sex. If the parents are really listening, they may even enjoy the questions in answering the challenge of their child's world of inquiries.

In general, of course, this situation becomes much more difficult for the CMT child. If the child has CMT from birth, his body may become a source of pain and discomfort for him, making him crankier and crying more than other babies. Parents also often experience grieving and disillusionment and guilt that their "little bundle of joy" wasn't born perfect and that perhaps they themselves are responsible for this genetic result that's become very real.

In toddlerhood, the CMT child discovers that he can't move his body like other children, and that his limbs might not look the same. By age three, as his understanding grows, he too may start to grieve over what he lacks.

It is said that a child knows who he is not by what you try to teach him but by what he thinks you are through his experiencing of you as a parent. For example, does he know you love him...all of him, including his entire body, even those awkwardly encased parts in bracing? If you're a parent with CMT, do you understand, accept, love and respect yourself including your body? These elements are important to CMT children with parents with or without CMT themselves. With positive self-acceptance and self-love, CMT children are much more apt to learn positive emotional coping skills that will work for them the rest of their lives. Once they can accept their bodies and themselves as they are, they will be much more comfortable with feelings of sexuality. If Mommy and Daddy hug and kiss, and show love and affection for each other and for their child too, then the child will have a stronger ability to cope with the outside world of curious and often unintentionally cruel classmates. The CMT child who views himself as attractive and acceptable will be much more capable of radiating this to the outside world.

CMT children don't all have to grow up to be little princes or princesses in terms of masculine or feminine appeal to the world. It's good to remember that sometimes it's difficult for parents to separate their own attitudes about sexuality from their child's.

My mother used to tell the story that on her wedding day she asked my grandmother, "Isn't there something I should know before I get married?" My grandmother turned all red and ran out of the room. It's no wonder that I grew up looking at closet doors.

Sexual attitudes and sexual taboos can be passed down from generation to generation right along with CMT and our adjustment to that. If parents can succeed in overcoming their own personal obstacles in a positive way, then their CMT children will be far, far ahead. The CMT child needs us to provide him with support, a positive attitude, acceptance and an environment that permits free and open discussion about both their CMT and their sexuality.

CMT AND ADOLESCENCE - Linda Crabtree

If your child has grown up knowing he has CMT he'll likely do pretty well as he goes into adolescence; he'll have adjusted to the fact that he has it. However, a great many people develop the signs of CMT as they become teens. This is a double whammy. It is hard enough going through all the changes of puberty without suddenly finding yourself having to struggle to accept a neuromuscular disease.

This is when love and understanding from your family is all important, especially if someone else in your family has CMT. That person knows what it is like to have CMT and to cope with it on a daily basis. To not talk about it or to find someone else in the family who has CMT is in denial can be really tough for an adolescent who has developed signs and symptoms of CMT. Talking about it can really ease the anxiety a teen or anyone can feel and let them know they aren't alone with their fears and questions.

Adolescence is also the time when young people go from being disgusted with the opposite sex to being terribly curious. They gather in same sex groups and "check out" opposite sex groups. They parade in front of each other to show off what they have. If what they have is thin legs, a drop-foot walk and clawed hands, it is going to be difficult to take up this type of adolescent activity. You may not be wanted as this is the time when young people value the most looking just like their peers. Being different doesn't wash and isn't fun. The heathy slim physique, great looking hair, minimal zits and a great smile go a long way at this time of life. An adolescent with CMT can do their very best with everything but the healthy physique. Drop foot can be corrected with ankle/foot orthoses. The young male with drop foot may not have a bad time hiding his AFOs but a young girl simply cannot wear skirts without them showing. Prom night can be traumatic.

However, a level head, the acceptance of family and peers and a good pair of black flats fitted with AFOs can see the night through in style. A long dress, if not out of keeping for the occasion, will certainly do the trick. Also, more and more girls are wearing lovely satin pants with lacy tops to dances and prom dress isn't as rigid as it used to be.

Looking at members of the opposite sex soon escalates to touching. It can be difficult to "reach out and touch someone" literally if you have CMT affected hands. They are not the beautiful hands in the TV commercials or the masculine hands of an athlete but are different. Not wanting to touch someone for fear of a put down or rejection but dying to touch someone can be terribly difficult and frustrating for a teen or indeed for anyone with CMT, young or old. What you learn as you grow intellectually is that those hands, no matter how different, can still caress, nurture, prepare a meal and make a living. They are wonderful hands, they are just different.

Also, there are certain signs that an adolescent sends to the opposite sex and these can be difficult to send if your hands are affected with CMT. Flipping or twisting your hair with a stare and a quick look away is a sign from a girl to a boy that she might be interested. If the hands take the interest away from the eyes the message will not be sent. And, the girl may not want to show her hands which could be thought of as odd behaviour for a teen. A boy who has never given his hands a second thought may run them through his hair or flip it aside out of his eyes or even comb it. He may adjust his collar or jacket with his hands in a hunching masculine way or hike up his baggy pants with his hands, fingers on his belt. This is his way of saying, "Look at me, I'm a guy and I'm gorgeous." The CMT teen may not feel that way because they don't feel gorgeous.
These seemingly simple things can be barriers to meeting members of the opposite sex and forming lasting relationships. Let's hope the teen is comfortable with his or her CMT, a secure peer group that accepts his or her CMT and understands the disability. Let's also hope that teen also has a winning personality, as a huge smile and a little wit will go a long way to winning friends and attracting a boy or girlfriend.

I know a young homosexual male who has CMT. He has gone through tremendous torment and anguish over shaking hands with his peers when he is introduced, such is the importance placed on a good body and a firm handshake in the homosexual society. He has now finally met someone who loves him for his intellect and warm, caring personality, not the strength of his handshake. Wonderful!

One note here: the adolescent who has an interest in school work and has a variety of interests seems to have a leg up, so to speak, on mixing well and meeting someone of the opposite sex. These intelligent adolescents, who often seek each other out, will sometimes be able to overlook the obvious and see the personality and talents shining through, while those limited in intellectual ability might tend to be attracted only by physical attributes and prowess.

Mastering the computer throughout the teen years can open opportunities to all manner of employment, friendships and knowledge and you don't have to stand on your feet all day or be a touch typist to operate one.

CMT, SEX AND TEENS

While it would be wonderful if all teens waited to have sex until they found the right partner, we have to be realistic. The teen years seem to BE about sex! Above all, the adolescent wants to be seen as healthy and that translates as fertile. We can't kid ourselves that thoughts of having sex aren't there. They certainly are, and the urge begins very early in the older child or young adolescent.

Something to consider is if your child has always been defined as a disabled child, rather than a child who happens to be disabled, he or she may not feel comfortable about discussing sex with you. After all sex and disability aren't on the same playing field for most people. If you have sex you can't be disabled, if you are disabled why would you want to have sex, you're so wrapped up in your disability. It is you, isn't it? You aren't a sexual being, you are a disabled being.

This, of course, is bull! You are a person with all the hormones, urges, desires and needs of anyone else. Your maturing sexuality should be acknowledged just as your curiosity and need to express yourself should be met with acceptance that this is normal human development. You are a normal human being who happens to have a disability. That's it, period.

This stage of tremendous change is also one in which the young man or woman may have difficulty taking care of their hygienic needs. Please see more on this under the heading of personal hygiene.

Masturbation begins in childhood and most people, disabled or not, find their own way to masturbate. Weak hands, a lack of feeling in the extremities and the inability to open and stretch or even move fingers to reach the genitals may pose a problem. There are many aids for sexual pleasure on the market that can be ordered by mail or bought in adults only shops that can help a person who is finding it difficult because of various forms of weakness or loss of sensation to masturbate. (See list of resources at the end.)

Masturbating someone else can be difficult with weak CMT hands but there are many aids for masturbation and, depending on your comfort level, there are other body parts that can be used to masturbate your partner if your hands are too weak.

As young people begin to pair off, touching becomes everything. How many times have you seen a young couple literally engulfed in each other kissing, caressing, so close you wonder how they can do it in public. This is a time for intimacy...not necessarily in private. However, the girl wants to be seen with a fellow who is fit and healthy just as the boy wants to be seen with a female that complements his outward appearance. Young people who have CMT sometimes have difficulty finding a mate because of their differences. Much depends on their level of disability and, I dare say, also on their attitude towards themselves and their peers.

CMT AND MARRIAGE

I don't know how many grown people I've cried with on the telephone because they were just coming to grips with their advancing CMT in their 30s or 40s. It was ignored in their childhood and teen years because it "wasn't that bad." Now, in adulthood, they are having to face reality for the first time and it hurts! Dreams can be shattered and sometimes relationships built on physical attraction and athletic ability fail miserably.

I've had both men and women experiencing great distress call me to talk out problems because, as their CMT has progressed, what they thought was a "beautiful marriage" has fallen apart. After much talk and discussion, it usually is acknowledged that the marriage was built on physical and sexual attraction, and when the CMT affected spouse could no longer perform or attract as before, the partner's ardour and fidelity waned. Something as seemingly mundane as the inability of a woman who has CMT to wear high heels has been the cause of a broken marriage. Thin legs and unattractive feet and hands have been known to cool a spouse's romantic notions, male or female. High levels of fatigue and not wanting spontaneous sex in the CMT spouse can also turn off the well partner in some cases. We, as people with CMT, can't change, we can't help what is happening to us. In some cases this is heartbreaking because the marriage wasn't built on deep feelings and concern for the other person from the beginning but on superficial looks and passion, which we all know can fade.

As CMT progresses, our bodies change, and if people can't talk about their concerns, then relationships, be they parent/child or spousal, can be adversely affected. It has been my experience over the last 13 years that more men leave their CMT affected wives than the other way around...most often leaving them with the children to raise, no way to make a living and a progressively debilitating neuromuscular disease that some of the children may have as well.

Deserted or divorced women who have CMT are beginning to hire lawyers and sue their spouses for support. Sometimes the lack of information on CMT and how truly debilitating it can be can skew the judgements but precedent-setting cases are being won.

These cases are giving women who have CMT a weapon to fight back with when their spouse leaves them for someone who is deemed "still attractive or sexy" in his eyes.

This type of thing happens mainly to women but I've also spoken to men whose wives have just walked away from their marriage when the going got rough and the fellow couldn't live up to her expectations. Neither sex has the monopoly on this type of treatment and neither does CMT. This type of thing happens when all manner of chronic disease processes are involved, it is unfortunately not uncommon.

BUT, and this is a huge but, there are plenty of strong, secure marriages among people whose family includes a spouse and children who have CMT. There are even some families who can trace their CMT back five or six generations. And, there are many, many wonderful spouses who love and cherish their mates, CMT and all, sticking with them through thick and thin.

Open communications, accepting and working with the CMT, learning to live well and cope on a daily basis with the rigors of CMT can make all the difference between a good and a bad relationship, a good and a bad marriage, and a functional and dysfunctional family when CMT is part of the factor.

TO HAVE OR HAVE NOT

Once a mate is chosen there is the fear of pregnancy. It is my feeling that young people in a family that has CMT in it should be tested to know if in fact they have CMT, whether they show it or not. Anyone who has reached puberty can either father a child or get pregnant. Any young person who has CMT should be aware of that fact and know that they can pass it on to a child born in or out of wedlock.

A child born to a teen with CMT can be of great concern to the entire family as the parents, especially the mother, may not be able to take care of the child properly and, indeed, may not fully understand herself at this age. And, a child with a disability is going to take even more care and concern to raise than a normal child. A mature, secure, loving environment is the least we can begin with when bringing a child into the world, and it can be planned.

In the U.K. some doctors have said that young people should not be tested to know if they have CMT or not. The ramifications from this are tremendous as young people are going to be sexually active whether parents like it or not. Knowing they may carry a genetically transferred neuromuscular disease might just make them think twice before having unprotected sex or sex at all before they are in a stable relationship. It also might spark their interest in birth control when birth control isn't uppermost in their minds.

A young couple also has to grapple with the fear and anxiety that they could have a CMT affected child. To be comfortable with who you are and what you have is one thing but being ready to take care of a child with the same disease is another. And, this may affect a young man's or woman's desire to marry.

I've had young women and men talk to me about this and some have told me that they never intend to marry. The reason is just what I've mentioned, they simply can't fathom the thought of bringing a child into the world with CMT.

With birth control available no one has to have a child. You can remain childless by choice. It is never a disgrace to not have children but it is unfortunate that some religions, some societies and cultures have made it seem as such. There are millions of unwanted children on this earth. Maternal and paternal instincts can easily be salved through fostering and adoption.

As I've said, birth control can help you put off the decision as to whether or not you want to have a child, but once the child is conceived you cannot choose whether or not that child has CMT, not easily, right now, anyway. Preliminary research is being done on separating the newly fertilized eggs that show CMT from those that do not and implanting them back in the mother and on testing the developing fetus in the womb for CMT but neither of these has been perfected and no reliable test is available to date. There will be soon though, I'm sure, as it is of prime importance to some people, especially those in cultures where a healthy child is everything and a disabled child reflects back on the parents, especially the mother, and the entire extended family.

The chances of having a child with CMT depend on what type of CMT the parent has and are all decided upon conception. (Please see Genetics and Testing)

SEX AND CMT

Feeling sexy and having recreational sex is just as possible for people who have CMT as it is for anyone else. It is very important though that the person who has CMT be comfortable with their CMT affected body and their partner also be comfortable with his or her own body as well as their partner's CMT. It could be difficult for a person who is not comfortable with their own body to accept someone who has CMT. Acceptance and love begin at home. If you don't love yourself and your own body, how are you going to love someone else and their body, especially if there is a lot to accept that is different.

One woman told me that she had not been touched by her husband for years or by anyone but herself. She felt starved for touch and for affection. Her husband was apparently turned off by her developing CMT. She eventually divorced him and has found an old love, someone who accepts her for who and how she is, CMT and all, and she is in love. How wonderful!

Another woman told me that her husband told her outright that he didn't want sex because her body simply no longer turned him on. He found sex elsewhere while she carried on in the marriage for the sake of the children. How sad when developing a deeper ability to communicate in the beginning might have seen a more profound love and understanding grow between these two.

Both men and women have told me that they are often lonely within and outside of marriage because they are not often touched affectionately by people who don't understand their CMT. Touch is an important part of life, it connects us with other humans and makes us feel part of the human race. To never be touched can be devastating to the human psyche and many of us who feel a lack of touch often fill the need for affectionate touching by keeping a pet whose unconditional love can be everything.

Acceptance and understanding can mean the difference between a truly good marriage and an awkward, stilted one. But, and again it's a big BUT, how many marriages are perfect, and many, many of us find ways to fill the gaps between what we have and what we need within a less than perfect marriage. I say more power to us, we do what we have to, to survive and thrive and we hopefully do it without hurting anyone.

CMT, IMPOTENCE AND OUR LOVE LIVES

Fortunately most people who have CMT have normal sex lives but there are some of us who find that our CMT has affected our ability to feel sensation in our genital or pudendal areas (surrounding our genitals), reach orgasm or in males to attain and maintain an erection. (see attached journal article on male impotence as well as one on pudendal nerve involvement as it can affect the feeling in our genital areas).

Men who experience problems with attaining and maintaining an erection can often be helped through self-injection of a substance that helps engorge the penis with blood and thus, attain and maintain. I recently had occasion to speak with a gentleman in his 60s who has CMT and was thinking of remarrying after being a widower for many years. He was having difficulty getting an erection physically although he very much felt passion towards his lady who was very understanding. After discussing options he had a penile implant and has now married and is able to do everything he feels he wants to do to please his lady love.

A variety of drugs can also cause impotence in men. Talk to your doctor about the drugs he has you on before you look elsewhere.

No real research has been done on women and their ability to reach orgasm but I know from talking to many women who have CMT that the ability to feel sensation in their genital area can be reduced or absent and the ability to reach orgasm can be missing or very difficult. I say can be – in most women it is normal but in some it is not (see attached journal article on pudendal nerve involvement).

Sometimes orgasm cannot be reached manually but a vibrator will do it. Sometimes it takes a very long time to bring a woman with CMT to orgasm because the ability to feel is reduced or so deep that it takes a partner with special perseverance to bring her to orgasm. Some women have their own way of bringing themselves to orgasm during masturbation or during intercourse.

In some people with reduced nerve sensation, the opening of the anus can be extremely sensitive and touching that can bring the woman to orgasm. The nipples, inner thighs, inner arms, ears and neck can also be erogenous zones and lightly stroking of these areas can sometimes bring a man or woman who has lost sensation in the genitals to be interested in intercourse.

Above all, the brain is the most powerful sex organ we have. Most people know that they can be instantly turned on by an odour, a certain picture in their mind or fantasy. Some people can bring themselves to orgasm without any touch at all. It takes training and self discipline for most of us who can rarely concentrate on one thing very long, but it can be done. If you are having trouble enjoying sex with your partner or even pleasuring yourself, there are all kinds of tapes and books that can help you find out more about yourself and how to find what you want.

CMT WEAKNESS AND SEX

"Pucker up and give me a big kiss," can start it all. One kiss is fine, but believe it or not, just puckering the lips to kiss can become tiring as facial muscles can be weakened on one or both sides. Tongue muscles can also be weak. I'm not exaggerating when I say that really intense foreplay can see a person with CMT pooped out before sexual intercourse has even begun.

Some people with CMT may have physical problems actually having intercourse. There are many ways and many positions in which to have intercourse but CMT can leave us with weak fingers, hands, wrists, and sometimes arms and shoulders, meaning some positions simply may not be for us. Knees can be weak or damaged from years of falling, even hips can be weak. A man who has CMT and is supposed to be on top during intercourse, in the missionary position, may find having sex quite tiring over time but change the position to the woman on top or to the spoon position where the man lies behind the woman and enters her lying down from the back and he may find renewed vigour and interest.

The same thing goes for a woman who is always on her back, legs up and open. Knowing several comfortable positions could mean the difference between good sex and making it a chore.

Many of us, male and female, develop what we call a charley horse or massive muscle cramps and these aren't uncommon during sex. Nothing can pour water on the fires of love more than a massive muscle spasm in your thigh, calf or back during intercourse. It simply hurts too much to carry on.

Warming up for sex with a warm shower and some good stretches is smart. Think of it as an athletic activity because, for you, it very well could be the most vigorous physical activity you have at any time. Avoiding positions that stress weak wrists, painful knees or any other part of the human anatomy that is CMT affected and can affect your ability to perform is smart. Work with what you have that is still strong and good. Accentuate the positive. Sometimes pillows and even a bean bag chair can be very helpful in holding a position and/or bracing a body part that wants to slip or fall.

Sex is good for us. All that breathing gets our blood going and the physical activity is relaxing and restorative. Sex also connects us with our other half when the pressures of life and our CMT may mean we sometimes neglect our emotional well-being.

Some of our readers have written to mourn the loss of spontaneity in their love lives. They are too tired to make love whenever their spouses want it or they would rather prepare slowly for something that gives both people a lot of pleasure while taking more out of them than anyone realizes. There is nothing wrong with explaining to your partner that you need to make love when you feel good, when you aren't dog tired and when you can put yourself into it without hurting at every move. Since fatigue is one of the primary symptoms of CMT, it isn't a bad thing to plan ahead when you are thinking of being very physically active. Most partners are understanding and want you to feel just as good about what both of you are doing as they do. After all, sex is about pleasing each other, isn't it?

While I realize that to make a date for sex is not what you'd call spontaneous, spontaneity in sex may be overrated. Knowing that you will be in your lover's arms by 11 p.m. that night can have you thinking about making love all day and planning how you would like it to be. Making the room, the bed and the time special, and just for the two of you can be far more romantic than a quickie before turning out the lights. And speaking of quickies, they may not be possible if you have trouble with your hands and can't get undressed quickly, don't respond like you used to and hurt all over from a day at work or with the kids and shopping. There are some things in life that common sense can make pleasurable and one is prolonging your sexual activity. We advocate pacing and moderation for all things when it comes to CMT and that may not be such a bad thing when it comes to sex either. Hey, holding hands in a nice warm bed, the dog between you and the TV on to a favourite movie, is really nice, too. Intercourse isn't everything, there is also a lot to be said for communicating and connecting any way that suits you.

If you are having trouble with your sex life or are experiencing a problem that you don't feel you can discuss with your partner because it is CMT related, try talking it out with a sex counsellor or someone who knows neuromuscular diseases. Most physicians are not trained in sex therapy but every now and then you'll find one who has the heart and empathy to be able to open up and help you sort things out. But, the person you should really have a heart to heart with first is yourself. Ask yourself if you are demanding too much of yourself in bed. Are you 50 and still trying to be 20. Are you taking into consideration the fact that things simply don't move as well as they used to and that you hurt in places you didn't know you had 10 years before. I think we all have a tendency to see ourselves as something we aren't in bed. Be that negative or positive, it helps to take a good inventory of what works and what doesn't and be honest with yourself. Then, talk it out with your spouse and see if you can work out a way that will be mutually pleasant for both of you and leave you both with a glow instead of one of you with cramps and so tired they can't see straight and the other raring to go for another round.

Also, I think too many of us try to keep up with the national average for sexual intercourse, whatever that is. If we read somewhere that the average couple in North America has sex 3.5 times a week, we feel we have to have sex the same number of times or there is something wrong with us. This is nonsense of course and we must stop and remember we have a progressive neuromuscular disease...there is something wrong with us! How many people in North America with a progressive neuromuscular disease have sex 3.5 times a week. How many indeed. Numbers are ridiculous. Enjoying yourself and pleasuring your partner is what counts here not the numbers.

Be realistic and your sex life will last longer.

There are some really good books being written, mainly by women, talking about sex with their spouses who have a chronic disease. I'll list some of these as well as some very helpful publications available to you that can help you and your spouse develop a better sex life taking CMT into consideration.

CMT AND INCONTINENCE

Incontinence - Being incontinent can be a hindrance to a full sex life or even stop a person from wanting to have sexual intercourse. Some of us have bladder incontinence because the muscles that help us hold it in are weak. Dribbling and stress incontinence can be a worry to a lover who can't discuss this problem with their partner. Open discussion is necessary as many a good laugh can be had when something as simple as a dribble occurs.

Some men and women with CMT wear a catheter but this is rare. Intercourse can be achieved by a male wearing a catheter by simply bending the tube back along the erect penis. Some men prefer to make sure their bladder is totally empty before engaging in intercourse and then take out the catheter to have intercourse normally. Some prefer to take out the catheter and use a condom in case of small leaks.

Women who are incontinent and use a catheter can still have intercourse wearing their catheter or, again, some may prefer to empty their bladder fully and remove the catheter during sex.

Faecal incontinence can be difficult but not impossible to work with during sex and again open communication can work wonders. Very few people who have CMT actually experience faecal incontinence. Those who do most likely experience leaking through pressure or stress. Some of us have bouts of diarrhea and constipation, and if we aren't having diarrhea, we are cramped with constipation. While constipation doesn't usually stop intercourse it can make it uncomfortable but diarrhea can mean that any exertion can see watery faeces on us or the bed. This can be embarrassing but it doesn't have to be if you can talk about it openly with your partner. A loving cleanup with a warm, wet washcloth can solve the problem and a change of position can sometimes alleviate the problem altogether.

Those who have faecal incontinence sometimes use suppositories so they can get their bowel program over at a certain time of the day and not have to worry about leakage during sexual activity.

Flatulence during sexual intercourse is also not uncommon, but because of our bowel problems and what could be a loose sphincter muscle in the anus, flatulence could be more common for us. Simply ignoring it or getting a good laugh from it is the only way to go here. Every normal human being passes gases made in the intestines hundreds of times a day, it is not something we can stop during sexual activity; in fact, it may happen more often during sex because of position or exertion.

To incontinence and flatulence I say don't sweat the small stuff when the act of pleasing each other is so wonderful!

HYGIENE
Both men and women can have problems keeping themselves clean because we have weak hands and wrists and may not be able to reach the places we need to keep clean.

As our hands and wrists weaken, we may have trouble wiping our anal area after a bowel movement. There is no disgrace in this, it is a fact of life, and it happens with people who have any kind of hand and wrist weakness. There are toilets on the market that can help you in this area by washing the areas gently with warm water and blow drying the area. There are also toilet bars that are quite inexpensive which can help you lean forward to access that area more easily and there are hand-held devices that hold toilet paper that might suit your individual needs.

As discussed previously, some of us have bouts of diarrhea and/or constipation. Diarrhea can mean we never know if we've gotten ourselves totally clean or not. There are some lovely little wipes available at drug stores that can assure you that you smell fine...if you can reach the area to use them.

Constantly being constipated can affect your breath, the way your skin smells and your comfort level for sexual foreplay and intercourse. Often, stool softeners can help constipation and drinking a lot of water also helps. See your doctor if you have constant diarrhea as you may not be absorbing nutrients from your food, because everything is passing through so quickly, and he can help with drugs.

Soft, small, long-handled brushes that curve to clean the anal or vaginal areas should be available to us, but I've never seen any on the market. To improvise, you can melt the stem of a super soft toothbrush and bend it to reach places you can't because your fingers won't extend.

For a woman with CMT, tampons can be difficult to insert if your wrists and fingers are extremely weak. The pads that have sticky strips on the underside of them and stick to underwear can be wonderful because there are no longer belts with fasteners that come undone to worry about. However, these pads can stick so well that they can be difficult to pull off. A small pair of needle-nosed pliers used just for this procedure can solve the problem as they give the hand a pinching movement when the ability to oppose forefinger and thumb is lost.

Inserting medications for vaginal infections may also be impossible (please keep in mind that some medications for yeast infections and bladder and urinary tract infections can be harmful to us) as well as feminine douching. There are many varied treatments for vaginal problems. If you tell your doctor that you cannot insert something into your vagina because your hands are too weak, he can prescribe something that doesn't need inserting or has an inserter that you can use.

Douching is usually done for feminine cleanliness after a menstrual period or intercourse and is not totally necessary as the natural discharges from these areas keep them lubricated and moist. Douching can alter the delicate pH balance in that area, which is not always desirable and can also be very difficult if a woman cannot squeeze a bottle or a bulb to get the liquid into the vagina.

Cleaning ears and other small body cavities can be difficult if your fingers won't stay stiff and strong and/or won't open. Fortunately, there are products like Q-tips for your navel but these cotton covered sticks can do more harm than good by forcing ear wax back into the ear canal. One tip here is to put a little mineral oil into your ear using a small hypodermic syringe with no needle and that loosens the ear wax and it comes out naturally.

There are many bathing aids on the market from handles to help you get into the tub to special bathtubs that have a special door sealed against water that allows you to simply step in and sit down without climbing over an edge. Fortunately, most of us seem to be able to keep ourselves clean and fresh with only a little searching out of the products that work best for us.
Just a note: smelling fresh and nice can be a turn on. Covering body odour with perfume doesn't do it and many people who have CMT are very sensitive to perfumes; we simply cannot tolerate them.

IN CLOSING
We've talked about some pretty intimate things here but that's what it is all about isn't it... getting our concerns about sexuality, sex, self-esteem and intimacy out in the open. I'm no expert and I'm not a doctor but I have CMT and since 1984 when I founded CMT International, I've talked to thousands of you who also have CMT so I am aware of the problems and situations we face. Also, I've been married twice, lectured on sexuality, sex, self-esteem and disability, written several papers on it and actually started a small magazine on the topic. It is no stranger to me and I'm quite comfortable discussing these topics. - Linda.

Definitions:
Pudendum - (pu-den-dum) the external genitalia of humans, especially of the female; female pudendum: that portion of the female genitalia comprising the mons pubis, labia majora, labia minora, vestibule of the vagina, bulb of the vestibule, greater and lesser vestibular glands, and vaginal orifice. Commonly used to denote the entire external female genitalia. Called also p. muliebre and vulva.

Sphincter - (sfingk-ter) (that which binds tight) a ringlike band of muscle fibers that constricts a passage or closes a natural orifice

Micturition - (mik-tu-rish-un) passage of urine; urination

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