I am 35 years old and have LGMD2E. My husband and I are trying to make a decision on whether or not to have a child. We have done extensive research, though there is not a lot of information available on the impact the pregnancy would have on the progression of the LGMD. I have found one book that profiles a number of different disabilities and the related pregnancy impacts, but many of the case studies related to MD were involving woman who were in a very different place with their progression than I am. We have met with my neurologist, a geneticist, a pulmonologist, a perinatologist, and many others to help us in our decision making process. I am still able to walk, but I have no arm strength at all, which could make caring for a child very challenging. Aside from MD, I am otherwise a very healthy individual.
I am wondering if anyone on this board has experienced a pregnancy with MD and, if so, if you would be willing to share your experiences with me. Besides the physical aspects of carrying a child and the impact it might have had on your progression, I am also interested in the experiences of caring for an infant with limited mobility and strength.
I feel very alone in this process as none of my friends can really understand what I am going through or the challenges I have to confront. It would be helpful to be able to share stories with those who might be facing a similar situation or who have gone through this same decision making process.
I don't have any experiences with pregnancy but I have LGMD 2I, and the last time I went to my neurologist, we spoke about having children. The Dr asked if we had thought about it, and we said that we had, but that we were afraid of what it would do to the progression of my MD. He agreed that it is a huge risk as I would not be able to exercise the way I do now for a while, and that my current activity level appears to have slowed down the progress. I work out in a 92 degree pool for a couple of hours every day. His suggestion was to look into adoption. It was a hard decision to make, but I want to be as much as I can for any children we may have naturally or adopted.
It is such a bittersweet feeling when my friends get pregnant, I am so excited for them, but a little piece of my heart cries becaus I won't have any...
I know it was not much help, but I just wanted to let you know that you are not alone out there....
I have a family history of a condition called cytoplasmic body myopathy which is also called a mild limb girdle. My sister and I have both had children prior to diagnosis. I had my last child 5 years old ago, when I was 30 years old. I was falling and I was very tired but I never went to the neurologist. After I had him, I never regained my strength which lead me to going to get checked out. My sister just had a baby in July. Our neurologist also warned her that her condition may change after the baby and it did. We love our children and they are definitely a blessing. Just know that pregnancy is difficult by itself but when you put it on top of a weakening condition, it only makes matters worse. It is definitely doable, but you will need a good support group and you have to learn how to do stuff a different way and you may need extra help when you go out, the stroller will be your best friend. I never could carry my son around in my arms but he definitly spent a lot of time on my lap---does he know the difference-no! I think its more important to love them
I can definitely understand feeling alone in the process. Everyone around you is married and having children and you are worried about how to afford the next piece of equipment, while all you would like to be worried about is how to afford college for your child.
When I was first diagnosed with muscular dystrophy (LGMD), one of my doctors told me not to have children. He told me to get a dog, instead. I was 20 years old and engaged. My heart was broken. I was angry in the beginning but then I realized that he was right. He just did not say it in a way that I appreciated.
I talked to a new neurologist and he confirmed my worst fears: there was a chance of my child inheriting the disorder, I would definitely see myself lose abilities and require more help in daily living activities, and the pregnancy could end early resulting in a premature child that needed extra care.
I see that I am VERY late to this post but felt I should comment - As I type I realize my reply is getting longer and longer but hopefully the details will be of help to someone with LGMD who is considering having a child.
I am 34 have LGMD and have three children 8, 6 and nine months. The third of which was a HARD decision to make!! I was pretty sure we were done after number two. I was pregnant with number two when I discovered that I had LGMD. I was still very mobile at that point. It was however getting hard for me to do a few things like run and go up stairs and as my pregnancy progressed I had trouble getting up from a bending position - ie picking things up off the floor.
We decided after much thought that we would go for number three. I was really worried. My neurologist and I both felt that the pregnancy wouldn't speed up the process of MD itself, but of course that MD would make the pregnancy and child raising difficult. As soon I decided to try to get pregnant again I started walking or exercising on a more regular basis, at that point I hated exercising even in the pool because it was just too exausting and I felt like I always over did it. But I made myself walk a little every day - around the block. I swam a lot but found it too hard to get out of the pool on my own around my third trimester. I found the steps were just a little too steep for me to manage on my own anymore. Although if one of my children pulled a chair over to the top of the stairs for me I could use that to lean on while I stepped out. I'm sure it was just because of the extra weight I was carrying.
For the most part I felt really good during my pregnancy.
Towards the end of my pregnancy I stopped walking much unless I was with someone. I was too afraid I would trip and fall. I fell twice in the beginning of my pregnancy but luckily wasn't hurt and could still get up on my own then. My fear later on was that I would fall in the middle of a parking lot, or in the middle of somewhere on my own and I wouldn't have a chair to lean on while I stood up, or my husband there to pick me up.
Before my pregnancy my husband predicted that I would be in a wheelchair before I gave birth. I was so happy to prove him wrong. I stayed active and walking throughout. I was worried about labor and delivery. I was afraid that I wouldn't be able to make it through labor and pushing!!! It was a blessing in disguise that my baby was breech and had to have a cesarean. My first.
After my pregnancy I started walking a little bit each day again. I have kept it up and have started exercising more regularly - my big incentive was to lose the baby weight but I have felt SO GOOD! OF course I can't go out jogging and I still can't walk very fast etc.. but I feel good. I feel better now than I did for several years before this last pregnancy. I have seen that exercise, even and especially just a little everyday has helped tremendously.
Caring for the baby hasn't been nearly as bad I had imagined. Of course I have help. My other children help a lot!! They pick the baby up off of the floor for me, help lift her up and down into the swing etc.. but for the most part I can care for the baby on my own. I am surprised at how much I can still do. My baby is not crawling yet and luckily the older kids will be out of school for the summer soon and will be here to help keep up with the baby. I have found that a stroller, and swing and bouncer and things that are UP OFF THE GROUND make it easier for me to care for a baby.
nodakr144 if you ever do check back here and have any questions or would like to discuss anything with me I'm always happy to. I think this board has a private message option although I havn't found it yet. I will try to check back soon. I havn't logged on since early in my pregnancy. I remeber having the same concerns as you and came here to read to see if anyone else had any experience.
I have just been diagnosed and wondered if you could point me in the right direction for literature/articles/experiences of pregnancy with LGMD. I know you were after first hand experience and so am I. Please let me know if you have found out anything to help since your post with this decision we both face.
I have FHMD and was diagnosed at the age of 19. I am 37 mow and decided to have children at an early age (21) to make sure that I was still "healthy" to care for the children during their baby faze.
During pregnancy my health was the best it ever was as my dystrophy detiorated at a very quick pace.
At presend I have 2 teenage boys - have limited arm strenght and limited walking ability. My sister had a baby recently and I cannot pick up this baby at all.
I actually want to encourage you to have a child and look at it with a positive attitude and although you will be limited to a whellchair during your pregnancy as the additional weight will be a factor there is always ways and means to overcome the handling of the baby and your husband is there to help you.
The way I bond with my sister child is when they place her on the table in front of me and this way I'm at "eye" level and the smiles is always there
Good luck with your decision and I hope that having this irritating "disability" will not deter you from living your life as a normal person
SarahJ74, I am not the original poster but I have similar questions and am trying to figure out how to contact you! I sent a friend request and added you to my contacts, but I'm not sure if that will allow me to message you or not. I hope you don't mind.