Saturday, May 28, 2011

Does anyone know about a muscle Disease CCPTS ?

Since I'm learning about this blogging I thought I would see if anyone out there knows about a muscle Disease CCPTS. My husband has health issues and this is one of the diagnosis we are faced with. I guess it's so rare that they don't even know if it's hereditary.

We have been trying to educate ourselves on the subject. It's difficult for my husband since he is one to be physically active and now he has to ask for help when lifting things, etc. Sometimes he tries to do things on his own, knowing he shouldn't and ends up having to recuperate for a couple of days...

We know that he has to eat every few hours. Protein foods & drink allot of water. Otherwise the disease eats at the muscles including the heart. It's just scary to me. And not knowing much about it concerns me. I have tried to find information on line about it and there isn't much out there.

We know that there is no health issues with the muscles on his mom's side of the family. We are not sure about his dads side of the family.

 We had been looking for his biological father for many years and we finally found his biological fathers side of the family 2 years ago. Unfortunately we missed his dad as he passed away just a few months before we found them. My husband never got to meet him or hear his voice.

On the Positive side we found out he has 2 sisters he never knew he had. And he has allot more family. They live all the way across the United States. Every time we think we  are doing good saving money to go see them, something happens. Like our car breaks down and we had to get a transmission for it. Then my husband got in a car accident. (Thank goodness the other person admitted to the officer that he was at fault.) Our car was totaled & we had to buy another one....Life stuff like that just keeps happening and always happens when you least expect it. So were still looking forward to seeing them in person and hope that it will be soon. I wish they could have been a part of each others lives while he was growing up. We will definitely take lots of pictures when we get to see them.

In the meantime his aunt has been doing a Family Tree and said she will try to find out if  his dad or if there is a history of anyone that may of  had any kind of muscle problems. He does have similar health issues as his biological father had such as C.O.P.D , etc, but the muscle thing we just don't know yet.

It's the not knowing that worries me. I don't know what my husband is going to go through as time goes on.  We would like to understand more about the disease...So if you or someone you know is experiencing the same situation Please Share. We would greatly appreciate being better educated on the subject. And if you believe in God, Please Pray for my husband & our family.

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