My wife has muscular dystrophy and her condition is worsening?
Question:
Any thoughts? (abusive comments will get you reported - go to myspace if you want to be a jerk - I'm looking for people who HAVE it or DEAL with it or know something about disabilities or genuine insights - not just opinions for points)
Thanks.
Answers:
I am sorry to hear about the difficulties you and your family are having. I dont know how much you know about this condition so I will start with a brief rundown of its cause and prognosis. Miyoshi dystrophy is classed with the limb girdle dystophies because of similarities but it has some differences. Where it is similar is the cause. Miyoshi and LGMD2B are both caused from a deficiency in dysferlin. There are other LGMD's that are caused by other deficiencies. With miyoshi it affects the calf muscles first and is often noticed in the late teens with an inability to walk on ones toes. The progression of this disorder is generally slow when compared to other dystrophies. Miyoshi does not affect life span and it is an autosomal recessive disorder. Which means you get a faulty gene from each parent. So unless you carry the faulty gene also your children will be unaffected.
Now to address the issues you are currently experiencing. There are muscular dystrophy groups all over the world. Contact the MD group in your area. They can help you with getting access to help in your home for your wife and kids. They can also help with access to support groups for families in similar situations. You may also want to ask them about trials and studies on new supplements and medications. You can also check wether your wife qualifies for disability benefits as this will help financially.
All that said keep in mind that although this is not a cureable disorder it is possible to manage. There are new breakthroughs all the time. There has been alot of success with many muscle disorders using steroids, co-enzyme Q10, creatine,and other supplements and medications. Ask your doctor if anything may help slow your wifes progression as I am not sure if any of the above listed are affective for miyoshi.
My best wishes to you and your family, I hope this helps.
Keep your spirits up and keep praying.
God Bless you and I will pray for your wife and family! This is an incredibly hard disease to fight but please look into all the newest treatments for her! I wish I could help more! Bless you!
Just Keep Praying.
what is miyoshi md? I've never heard of that.
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Not sure about MD and how it works, but I could ask around and see what the Drs says that are associated with us! We have lots of other products as well - but I am living proof that this stuff works because I am now loving life and doing loads of things every day! and I had given up and thought life was going to stay that way and get worse...
God Bless and I will be praying for you both...
loseyourbelly101@yahoo.com
Hi, my name's Ben and I have CCD, and I'm sorry to hear of your situation. I have only just heard of miyoshi MD, and as such am unfamiliar with it. I don't know if your wife's MD is similar to CCD (mine is becoming slowly progressive now - I'm 35), and I'm now researching it as we speak, but if you (or I) find any similarities and/or there's ANY way at all I can help at all, even just with a chat, please let me know.
take care,
Ben Little
Hi there. I have a very rare nueromuscular condition as well and I am covered under the Muscular Dystrophy Association. Your children are very young and need someone very stable in the home. MD might be able to provide you with those resources such as a nanny to come when you are in classes. I know they sent me an entire packet of things that they cover and things that they do in order to help out familys. Also you can try calling local churches and explaining the situation and most times they will coordinate volunteers to come over while you are away to help with the children and your wife. There are a lot of untapped resources in every community its just knowing where to look and how to ask. But you have to ask for the sake of your wife and children. Along with yourself. You cannot be in a class and worried to death about your family. Also I am going to assume that your wife is on SSDI and they might have services available as well for help in the home while you are not there. I am very sorry this is happening to your family and if I can be of any help to you please feel free to email me at any time. In the meantime I would really call your church or local churches and a lot of times especially in the summer time youth groups have things they must complete for a program at church and they could come over and help out with the kids and your wife as well. I will keep you and your wife and your children in my prayers.
I think I am confused as to what insights you are seeking. Your wife is getting progressively worse...I am so very sorry for her..and for your children, and I am concerned that you feel you cannot care for your children when she cannot. There are child agencies that will help you to get your children into daycare, and you would not need to pay, if that is the problem. You could care for your wife and children that way, couldn't you? Have you spoken to child agencies about getting help for your children right now? It sounds as though your wife needs this help, now. Pray for the best, always..yet.....al... consider the worst that can happen, and how to deal with that. Now, while your wife is caring for the children, is an excellent time to have both of you discuss how the children can be taken care of in the best way. Childcare agencies with grants can help you figure out the best plan. Keep praying, and God bless.
Well, I don't HAVE it or DEAL with MS but I do deal with disability--I have arthritis in my spine which makes me have chronic back aches,and I am a little person ( 4 ft 7) who is morbidly obese...so I know a little about disability.
Now, for my suggestions or advice regarding your situation.Have you tried,or is your wife qualified to get any type of assistance? Since you are going to school, with her disability she should be able to get some type of "provider"services to come to your home and care for her and, therefore, your children on a daily basis. That care should include helping her with her personal care, bathing,washing her hair, etc. as well as cleaning the house, cooking her meal (s), and all like that.. Not to be hard or uncaring in ANY way but if anything should happen do you have any family support that would be able and willing to step up and help with the children should something happen that you nor your wife were unable to care for them?
I don't know if I've been of any help or comfort to you but I think I can understand at least a little bit of what you are asking for and I hope that something I or someone on this site says will be of some help and comfort to you. Good luck in your pursuit of betterment for both you and your family.
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