Re: ROD

[Guest guest]

Rod: I have 4 kids. 3 have been diagnosed with mito and 1 only deals with fatigue/endurance issues but does carry a presumed diagnosis. This is their caring bridge site: www.caringbridge.org/wi/zachsam One did not show symptoms until the age of 14. she just turned 18 and things have been slowly worse for her. But she is still quite functional and has a very "typical" teenage life in most ways. Two began showing symptoms within weeks of birth. These are my boys age 7 and 12 and the disease has been quite profound and progressive in both. Its true their lives are not typical but they are meaningful. I have not been diagnosed. But I show enough signs and symptoms that it is clear to the doctors and I that I do have this to some degree. I don't focus on it except for the practical implications so that I can find a way to deal with it. My best piece of advise is to take one day at a time. Its like running if you ever were a runner . You can't go out in the morning and say I am going to run 10 miles - here I go. Its better to say I hope I run 10 miles but if I run one that will be great, and then when you get to the one mile mark you say I think I will go for two miles today.... My other advice: Don't let mitochondrial disease take over your family. Talk about other things at the dinner table, go to community events even if it takes a lot of planning, read the paper and follow politics....it is so easy to fall into a mode where all you do is think about, read about and talk about mito and I have seen many a family taken over by mito. That is the only way this disease can win. That is not to say that you should put your head in the sand. My kids have more doctors, nurses and allied health professionals than I can count. You should see our house pre Christmas with all their gifts and cards lined up. I made it my business to learn about this disease. I found a primary doctor who I could partner with. Over time we have assembled a group of specialists and others that are team players. We try to anticipate needs ahead of time and this takes careful, detailed attention. We have plans in place for how to address problems so that time is not wasted and treatment can ensue when needed. Our primary doctor asked all of our specialists to think about how many times you are seeing these kids and do you really need to see them that many times or can some of this be done by phone or email. That helped immensely to reduce the monthly or quarterly visits that every specialist wanted us to have. This all takes time to put in place but build it one piece at a time and find what works for your family. I see you have teenagers - my teen has been a challenge in terms of taking care of her health. But I have had to step away and let her make her own choices. There have been months that go by that she does not take any of her medication, or she thinks she can go from 5 am to 1 am with 4 hours of sleep. Then she gets sick, can't function and she begins to take it again. Its hard to watch that but at least she is in the safety of her own home. Worse would be to direct her every choice now and then let her fall when she is out on her own. Lastly - believe that life can be wonderful despite or maybe it is in spite mitochondrial diseaseMy 18 yr old daughter is going away to college next year to major in biochemistry and then save the world from mitochondrial disease. My son that is 12 wants to grow up to be a surgeon, a spy and a researcher.My 11 year old daughter wants to be a researcher/writer and find a cure.My 7 year old son wants to be a power ranger and rid the world of evil. I love their dreams...don't ever let this disease take over so that you and your children and wife cease to have dreams. Anne J.

[Guest guest]

Rod: I have 4 kids. 3 have been diagnosed with mito and 1 only deals with fatigue/endurance issues but does carry a presumed diagnosis. This is their caring bridge site: www.caringbridge.org/wi/zachsam One did not show symptoms until the age of 14. she just turned 18 and things have been slowly worse for her. But she is still quite functional and has a very "typical" teenage life in most ways. Two began showing symptoms within weeks of birth. These are my boys age 7 and 12 and the disease has been quite profound and progressive in both. Its true their lives are not typical but they are meaningful. I have not been diagnosed. But I show enough signs and symptoms that it is clear to the doctors and I that I do have this to some degree. I don't focus on it except for the practical implications so that I can find a way to deal with it. My best piece of advise is to take one day at a time. Its like running if you ever were a runner . You can't go out in the morning and say I am going to run 10 miles - here I go. Its better to say I hope I run 10 miles but if I run one that will be great, and then when you get to the one mile mark you say I think I will go for two miles today.... My other advice: Don't let mitochondrial disease take over your family. Talk about other things at the dinner table, go to community events even if it takes a lot of planning, read the paper and follow politics....it is so easy to fall into a mode where all you do is think about, read about and talk about mito and I have seen many a family taken over by mito. That is the only way this disease can win. That is not to say that you should put your head in the sand. My kids have more doctors, nurses and allied health professionals than I can count. You should see our house pre Christmas with all their gifts and cards lined up. I made it my business to learn about this disease. I found a primary doctor who I could partner with. Over time we have assembled a group of specialists and others that are team players. We try to anticipate needs ahead of time and this takes careful, detailed attention. We have plans in place for how to address problems so that time is not wasted and treatment can ensue when needed. Our primary doctor asked all of our specialists to think about how many times you are seeing these kids and do you really need to see them that many times or can some of this be done by phone or email. That helped immensely to reduce the monthly or quarterly visits that every specialist wanted us to have. This all takes time to put in place but build it one piece at a time and find what works for your family. I see you have teenagers - my teen has been a challenge in terms of taking care of her health. But I have had to step away and let her make her own choices. There have been months that go by that she does not take any of her medication, or she thinks she can go from 5 am to 1 am with 4 hours of sleep. Then she gets sick, can't function and she begins to take it again. Its hard to watch that but at least she is in the safety of her own home. Worse would be to direct her every choice now and then let her fall when she is out on her own. Lastly - believe that life can be wonderful despite or maybe it is in spite mitochondrial diseaseMy 18 yr old daughter is going away to college next year to major in biochemistry and then save the world from mitochondrial disease. My son that is 12 wants to grow up to be a surgeon, a spy and a researcher.My 11 year old daughter wants to be a researcher/writer and find a cure.My 7 year old son wants to be a power ranger and rid the world of evil. I love their dreams...don't ever let this disease take over so that you and your children and wife cease to have dreams. Anne J.