My son was duchenne muscular dystrophy in November.  We are obviously devastated like other parents in our situation.  We have been to Dr. Wong in Cincinnati and Dr Wagner at Johns Hopkins.  Although I appreciate their dedication to helping this disease I am extremely discouraged with where science is.  We are accepting a fate that just is not fair.  We put more research into minor physical ailments because more people suffer from them.  Can anyone suggest any type of holistic approach fro this disease?  Even if it takes us out of the country? Please write back.  We are from the NYC area.

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Rob and family,

I am sure it is very hard. I adopted my son John at 4. I knew he had DMD, but was prepared for him to die by age 15. He is now 20 and doing very well. He had two older cousins who died at 20 and 28. They all had exactly the same deletion. What I am trying to communicate here is that you are not helpless in the face of this medical condition. Although there are many "medical people" who claim they have a cure, if there were one I can guarantee that Dr. Wong (or Pat Furlong or many others) would know about it and tell you.

What works as a treatment also varies a lot upon your son's particular deletion/duplication/repeat... As frustrating as that is for us, it is why this condition is so complex to treat. Also although most of the time you will hear that only one gene is involved, the odds are that many other genes influence and are influenced by dystrophin as well. We used to think genetics was simple..now we are getting smarter.

The good news is that your son is young and the rate of research is high. Researchers know now that when you are doing basic research in one area it may very well affect many others (well, they probably knew that all along but couldn't get us to hear it, sigh). Doctors now know (and this is new in the last 15 years THANK YOU PAT FURLONG) that if you treat the symptoms like heart disease, pulmonary issues...that a person affected by DMD can live longer and with a much better quality of life than was thought possible. There are many reasons for hope.

Keeping him as health as you can (and you as healthy as you can) is the key for now.Truly the thing I see/hear most often is that parents don't follow directions very well. If the pulmonaligist says start with a cpap or bipap, use it faithfully, keep it clean (would be good if he was breathing clean air). Sleep (huge for heart and other health), good nutrition (plus an excellent vitamin supplement), supplements in moderation (calcium, vitamin D, CoQ 10, Juven), follow medical directions (you already have excellent doctors), enjoy every day to keep stress low, exercise in moderation (swimming in warm water pool), teach your son to listen to his body, excellent pt/ot (they can help you with "less informed" school personnel), immunizations up to date, deflazacort (huge!!), learn the key signs of serious distress...

Apply for the Katie Beckett or similar waiver in your State. It will put you on a list for Medicaid and other services which will help with expenses. Your department of social services can explain.

One other thing. Parents sometimes hate to discipline a child with a serious disability. Teach him as you would any child to be respectful, polite, share... You want him to have friends and be welcome where ever he goes.

In truth, we all have disabilities - we just don't all know what they are. I am fortunate to have many friends who have very significant disabilities and who have never let them get in their way when they wanted to do something. You will notice the names I give you are all in Colorado, because is where I live: Tim Fox, Fox and Robertson, Carrie Ann Lucas, Laura Hershey, Larry Ruiz, Julie Reiskin. Google them and see what they have accomplished, where they have traveled - how long they have lived past their expected demise.

Wisdom is hard in the face of wanting to fix something now. As a former high tech manager, I can tell you I was sure that there was something out there...and I would find it. Now I think in more basic terms and make sure to do what is in front of me before I go for the internet solution.There are lots of very smart and well informed people here. The ones you particularly want to pay attention to can actually explain what an oligonucleotide is. Duchenne affects all kinds of families. You can be sure those bio-researchers who have kids with DMD are on top of the research.

The pain is hard to bear. The change in hopes/dreams/plans hard to even absorb. We are all in the same place with you and your son.So what can you do once you have the basics thoroughly in hand ---Raise money for PPMD. Talk to your congress people about devoting research money to Duchenne Research. That is where the breakthroughs will come. Mostly accidental discoveries made whil the researchers are working on something else - very observant people who ask a lot of questions. Involve your friends and neighbors. Take a biology course/microbiology course...learn the lingo. Read the article in the December issue of The New Yorker on Pat Furlong. It will help you understand why things have gotten better in the last 15 years and how...a study in patience, persistence and pest-hood.

Sorry I know of no quick fixes.

 

Ginny

Thanks so much for all of the advice. I feel we have become so absorbed in duchenne that doctors cant believe how in tune we are. We really appreciate u spending some time with us today. My wife is an RN and I am a Sergeant with the police dept here in NY. We have contact with alot of people so we plan on getting into the fund raising campaign. Any money we raise will go directly to research. If you had time I would really like the opportunity to speak to you. I can give u my # if you had time. Thanks ...Rob

Ginny Ward said:

Rob and family,

I am sure it is very hard. I adopted my son John at 4. I knew he had DMD, but was prepared for him to die by age 15. He is now 20 and doing very well. He had two older cousins who died at 20 and 28. They all had exactly the same deletion. What I am trying to communicate here is that you are not helpless in the face of this medical condition. Although there are many "medical people" who claim they have a cure, if there were one I can guarantee that Dr. Wong (or Pat Furlong or many others) would know about it and tell you.

What works as a treatment also varies a lot upon your son's particular deletion/duplication/repeat... As frustrating as that is for us, it is why this condition is so complex to treat. Also although most of the time you will hear that only one gene is involved, the odds are that many other genes influence and are influenced by dystrophin as well. We used to think genetics was simple..now we are getting smarter.

The good news is that your son is young and the rate of research is high. Researchers know now that when you are doing basic research in one area it may very well affect many others (well, they probably knew that all along but couldn't get us to hear it, sigh). Doctors now know (and this is new in the last 15 years THANK YOU PAT FURLONG) that if you treat the symptoms like heart disease, pulmonary issues...that a person affected by DMD can live longer and with a much better quality of life than was thought possible. There are many reasons for hope.

Keeping him as health as you can (and you as healthy as you can) is the key for now.Truly the thing I see/hear most often is that parents don't follow directions very well. If the pulmonaligist says start with a cpap or bipap, use it faithfully, keep it clean (would be good if he was breathing clean air). Sleep (huge for heart and other health), good nutrition (plus an excellent vitamin supplement), supplements in moderation (calcium, vitamin D, CoQ 10, Juven), follow medical directions (you already have excellent doctors), enjoy every day to keep stress low, exercise in moderation (swimming in warm water pool), teach your son to listen to his body, excellent pt/ot (they can help you with "less informed" school personnel), immunizations up to date, deflazacort (huge!!), learn the key signs of serious distress...

Apply for the Katie Beckett or similar waiver in your State. It will put you on a list for Medicaid and other services which will help with expenses. Your department of social services can explain.

One other thing. Parents sometimes hate to discipline a child with a serious disability. Teach him as you would any child to be respectful, polite, share... You want him to have friends and be welcome where ever he goes.

In truth, we all have disabilities - we just don't all know what they are. I am fortunate to have many friends who have very significant disabilities and who have never let them get in their way when they wanted to do something. You will notice the names I give you are all in Colorado, because is where I live: Tim Fox, Fox and Robertson, Carrie Ann Lucas, Laura Hershey, Larry Ruiz, Julie Reiskin. Google them and see what they have accomplished, where they have traveled - how long they have lived past their expected demise.

Wisdom is hard in the face of wanting to fix something now. As a former high tech manager, I can tell you I was sure that there was something out there...and I would find it. Now I think in more basic terms and make sure to do what is in front of me before I go for the internet solution.There are lots of very smart and well informed people here. The ones you particularly want to pay attention to can actually explain what an oligonucleotide is. Duchenne affects all kinds of families. You can be sure those bio-researchers who have kids with DMD are on top of the research.

The pain is hard to bear. The change in hopes/dreams/plans hard to even absorb. We are all in the same place with you and your son.So what can you do once you have the basics thoroughly in hand ---Raise money for PPMD. Talk to your congress people about devoting research money to Duchenne Research. That is where the breakthroughs will come. Mostly accidental discoveries made whil the researchers are working on something else - very observant people who ask a lot of questions. Involve your friends and neighbors. Take a biology course/microbiology course...learn the lingo. Read the article in the December issue of The New Yorker on Pat Furlong. It will help you understand why things have gotten better in the last 15 years and how...a study in patience, persistence and pest-hood.

Sorry I know of no quick fixes.

 

Ginny

Ginny you are si wise your words were just what that Dad needed Ginny I tried to write you about Calebs heart problems but it went to me I am just learning the comp. and have more to go to get it right If you want to give me your number I so need to talk to someone cause I do not care if Caleb walks but the breathing and heart got to find out what to do or if you want I can send mine please let me know,   Penny

Ginny Ward said:

Rob and family,

I am sure it is very hard. I adopted my son John at 4. I knew he had DMD, but was prepared for him to die by age 15. He is now 20 and doing very well. He had two older cousins who died at 20 and 28. They all had exactly the same deletion. What I am trying to communicate here is that you are not helpless in the face of this medical condition. Although there are many "medical people" who claim they have a cure, if there were one I can guarantee that Dr. Wong (or Pat Furlong or many others) would know about it and tell you.

What works as a treatment also varies a lot upon your son's particular deletion/duplication/repeat... As frustrating as that is for us, it is why this condition is so complex to treat. Also although most of the time you will hear that only one gene is involved, the odds are that many other genes influence and are influenced by dystrophin as well. We used to think genetics was simple..now we are getting smarter.

The good news is that your son is young and the rate of research is high. Researchers know now that when you are doing basic research in one area it may very well affect many others (well, they probably knew that all along but couldn't get us to hear it, sigh). Doctors now know (and this is new in the last 15 years THANK YOU PAT FURLONG) that if you treat the symptoms like heart disease, pulmonary issues...that a person affected by DMD can live longer and with a much better quality of life than was thought possible. There are many reasons for hope.

Keeping him as health as you can (and you as healthy as you can) is the key for now.Truly the thing I see/hear most often is that parents don't follow directions very well. If the pulmonaligist says start with a cpap or bipap, use it faithfully, keep it clean (would be good if he was breathing clean air). Sleep (huge for heart and other health), good nutrition (plus an excellent vitamin supplement), supplements in moderation (calcium, vitamin D, CoQ 10, Juven), follow medical directions (you already have excellent doctors), enjoy every day to keep stress low, exercise in moderation (swimming in warm water pool), teach your son to listen to his body, excellent pt/ot (they can help you with "less informed" school personnel), immunizations up to date, deflazacort (huge!!), learn the key signs of serious distress...

Apply for the Katie Beckett or similar waiver in your State. It will put you on a list for Medicaid and other services which will help with expenses. Your department of social services can explain.

One other thing. Parents sometimes hate to discipline a child with a serious disability. Teach him as you would any child to be respectful, polite, share... You want him to have friends and be welcome where ever he goes.

In truth, we all have disabilities - we just don't all know what they are. I am fortunate to have many friends who have very significant disabilities and who have never let them get in their way when they wanted to do something. You will notice the names I give you are all in Colorado, because is where I live: Tim Fox, Fox and Robertson, Carrie Ann Lucas, Laura Hershey, Larry Ruiz, Julie Reiskin. Google them and see what they have accomplished, where they have traveled - how long they have lived past their expected demise.

Wisdom is hard in the face of wanting to fix something now. As a former high tech manager, I can tell you I was sure that there was something out there...and I would find it. Now I think in more basic terms and make sure to do what is in front of me before I go for the internet solution.There are lots of very smart and well informed people here. The ones you particularly want to pay attention to can actually explain what an oligonucleotide is. Duchenne affects all kinds of families. You can be sure those bio-researchers who have kids with DMD are on top of the research.

The pain is hard to bear. The change in hopes/dreams/plans hard to even absorb. We are all in the same place with you and your son.So what can you do once you have the basics thoroughly in hand ---Raise money for PPMD. Talk to your congress people about devoting research money to Duchenne Research. That is where the breakthroughs will come. Mostly accidental discoveries made whil the researchers are working on something else - very observant people who ask a lot of questions. Involve your friends and neighbors. Take a biology course/microbiology course...learn the lingo. Read the article in the December issue of The New Yorker on Pat Furlong. It will help you understand why things have gotten better in the last 15 years and how...a study in patience, persistence and pest-hood.

Sorry I know of no quick fixes.

 

Ginny

send to is.cuimhim.liom@gmail.com

 

Ginny
Rob Capolongo said:

Thanks so much for all of the advice. I feel we have become so absorbed in duchenne that doctors cant believe how in tune we are. We really appreciate u spending some time with us today. My wife is an RN and I am a Sergeant with the police dept here in NY. We have contact with alot of people so we plan on getting into the fund raising campaign. Any money we raise will go directly to research. If you had time I would really like the opportunity to speak to you. I can give u my # if you had time. Thanks ...Rob

Ginny Ward said:

Rob and family,

I am sure it is very hard. I adopted my son John at 4. I knew he had DMD, but was prepared for him to die by age 15. He is now 20 and doing very well. He had two older cousins who died at 20 and 28. They all had exactly the same deletion. What I am trying to communicate here is that you are not helpless in the face of this medical condition. Although there are many "medical people" who claim they have a cure, if there were one I can guarantee that Dr. Wong (or Pat Furlong or many others) would know about it and tell you.

What works as a treatment also varies a lot upon your son's particular deletion/duplication/repeat... As frustrating as that is for us, it is why this condition is so complex to treat. Also although most of the time you will hear that only one gene is involved, the odds are that many other genes influence and are influenced by dystrophin as well. We used to think genetics was simple..now we are getting smarter.

The good news is that your son is young and the rate of research is high. Researchers know now that when you are doing basic research in one area it may very well affect many others (well, they probably knew that all along but couldn't get us to hear it, sigh). Doctors now know (and this is new in the last 15 years THANK YOU PAT FURLONG) that if you treat the symptoms like heart disease, pulmonary issues...that a person affected by DMD can live longer and with a much better quality of life than was thought possible. There are many reasons for hope.

Keeping him as health as you can (and you as healthy as you can) is the key for now.Truly the thing I see/hear most often is that parents don't follow directions very well. If the pulmonaligist says start with a cpap or bipap, use it faithfully, keep it clean (would be good if he was breathing clean air). Sleep (huge for heart and other health), good nutrition (plus an excellent vitamin supplement), supplements in moderation (calcium, vitamin D, CoQ 10, Juven), follow medical directions (you already have excellent doctors), enjoy every day to keep stress low, exercise in moderation (swimming in warm water pool), teach your son to listen to his body, excellent pt/ot (they can help you with "less informed" school personnel), immunizations up to date, deflazacort (huge!!), learn the key signs of serious distress...

Apply for the Katie Beckett or similar waiver in your State. It will put you on a list for Medicaid and other services which will help with expenses. Your department of social services can explain.

One other thing. Parents sometimes hate to discipline a child with a serious disability. Teach him as you would any child to be respectful, polite, share... You want him to have friends and be welcome where ever he goes.

In truth, we all have disabilities - we just don't all know what they are. I am fortunate to have many friends who have very significant disabilities and who have never let them get in their way when they wanted to do something. You will notice the names I give you are all in Colorado, because is where I live: Tim Fox, Fox and Robertson, Carrie Ann Lucas, Laura Hershey, Larry Ruiz, Julie Reiskin. Google them and see what they have accomplished, where they have traveled - how long they have lived past their expected demise.

Wisdom is hard in the face of wanting to fix something now. As a former high tech manager, I can tell you I was sure that there was something out there...and I would find it. Now I think in more basic terms and make sure to do what is in front of me before I go for the internet solution.There are lots of very smart and well informed people here. The ones you particularly want to pay attention to can actually explain what an oligonucleotide is. Duchenne affects all kinds of families. You can be sure those bio-researchers who have kids with DMD are on top of the research.

The pain is hard to bear. The change in hopes/dreams/plans hard to even absorb. We are all in the same place with you and your son.So what can you do once you have the basics thoroughly in hand ---Raise money for PPMD. Talk to your congress people about devoting research money to Duchenne Research. That is where the breakthroughs will come. Mostly accidental discoveries made whil the researchers are working on something else - very observant people who ask a lot of questions. Involve your friends and neighbors. Take a biology course/microbiology course...learn the lingo. Read the article in the December issue of The New Yorker on Pat Furlong. It will help you understand why things have gotten better in the last 15 years and how...a study in patience, persistence and pest-hood.

Sorry I know of no quick fixes.

 

Ginny

I tried your email - It wouldn't go thru.  My mail is robcap9mm@aol.com
Ginny - please send me the number again
Please try to mail me your # again   robcap9mm@aol.com

Rob Capolongo said:
Thanks so much for all of the advice. I feel we have become so absorbed in duchenne that doctors cant believe how in tune we are. We really appreciate u spending some time with us today. My wife is an RN and I am a Sergeant with the police dept here in NY. We have contact with alot of people so we plan on getting into the fund raising campaign. Any money we raise will go directly to research. If you had time I would really like the opportunity to speak to you. I can give u my # if you had time. Thanks ...Rob

Ginny Ward said:

Rob and family,

I am sure it is very hard. I adopted my son John at 4. I knew he had DMD, but was prepared for him to die by age 15. He is now 20 and doing very well. He had two older cousins who died at 20 and 28. They all had exactly the same deletion. What I am trying to communicate here is that you are not helpless in the face of this medical condition. Although there are many "medical people" who claim they have a cure, if there were one I can guarantee that Dr. Wong (or Pat Furlong or many others) would know about it and tell you.

What works as a treatment also varies a lot upon your son's particular deletion/duplication/repeat... As frustrating as that is for us, it is why this condition is so complex to treat. Also although most of the time you will hear that only one gene is involved, the odds are that many other genes influence and are influenced by dystrophin as well. We used to think genetics was simple..now we are getting smarter.

The good news is that your son is young and the rate of research is high. Researchers know now that when you are doing basic research in one area it may very well affect many others (well, they probably knew that all along but couldn't get us to hear it, sigh). Doctors now know (and this is new in the last 15 years THANK YOU PAT FURLONG) that if you treat the symptoms like heart disease, pulmonary issues...that a person affected by DMD can live longer and with a much better quality of life than was thought possible. There are many reasons for hope.

Keeping him as health as you can (and you as healthy as you can) is the key for now.Truly the thing I see/hear most often is that parents don't follow directions very well. If the pulmonaligist says start with a cpap or bipap, use it faithfully, keep it clean (would be good if he was breathing clean air). Sleep (huge for heart and other health), good nutrition (plus an excellent vitamin supplement), supplements in moderation (calcium, vitamin D, CoQ 10, Juven), follow medical directions (you already have excellent doctors), enjoy every day to keep stress low, exercise in moderation (swimming in warm water pool), teach your son to listen to his body, excellent pt/ot (they can help you with "less informed" school personnel), immunizations up to date, deflazacort (huge!!), learn the key signs of serious distress...

Apply for the Katie Beckett or similar waiver in your State. It will put you on a list for Medicaid and other services which will help with expenses. Your department of social services can explain.

One other thing. Parents sometimes hate to discipline a child with a serious disability. Teach him as you would any child to be respectful, polite, share... You want him to have friends and be welcome where ever he goes.

In truth, we all have disabilities - we just don't all know what they are. I am fortunate to have many friends who have very significant disabilities and who have never let them get in their way when they wanted to do something. You will notice the names I give you are all in Colorado, because is where I live: Tim Fox, Fox and Robertson, Carrie Ann Lucas, Laura Hershey, Larry Ruiz, Julie Reiskin. Google them and see what they have accomplished, where they have traveled - how long they have lived past their expected demise.

Wisdom is hard in the face of wanting to fix something now. As a former high tech manager, I can tell you I was sure that there was something out there...and I would find it. Now I think in more basic terms and make sure to do what is in front of me before I go for the internet solution.There are lots of very smart and well informed people here. The ones you particularly want to pay attention to can actually explain what an oligonucleotide is. Duchenne affects all kinds of families. You can be sure those bio-researchers who have kids with DMD are on top of the research.

The pain is hard to bear. The change in hopes/dreams/plans hard to even absorb. We are all in the same place with you and your son.So what can you do once you have the basics thoroughly in hand ---Raise money for PPMD. Talk to your congress people about devoting research money to Duchenne Research. That is where the breakthroughs will come. Mostly accidental discoveries made whil the researchers are working on something else - very observant people who ask a lot of questions. Involve your friends and neighbors. Take a biology course/microbiology course...learn the lingo. Read the article in the December issue of The New Yorker on Pat Furlong. It will help you understand why things have gotten better in the last 15 years and how...a study in patience, persistence and pest-hood.

Sorry I know of no quick fixes.

 

Ginny

Ginny,

 

I think we talked before about how my son is adopted as well.  However, we did not know about is diagnosis until 5 years later but would not trade him for the world...love the little guy...well going to be 9 in two weeks...I wanted to comment on the remark you made about the discipline....SO TRUE....it is very hard to discipline a child with special needs, I learned first hand until it kind of got out of control for almost a year!  It was very difficult for all of us but we turned him around and have a much happier family.....I'm not sure what caused his behavior, but think the majority was a lack of discipline because we felt bad....we had to come down hard. He was getting in trouble at school all the time. At home, he would turn into a wild man around 8pm and it took us an hour or two to get him settled down.  It did not make for a happy mom or dad..(or marriage)..we now have a very nice boy that listens and understands. He has only had two minor behavior problems as school this year...but I think it's just a boy thing...lol....good luck to all and hang in there Rob and family...treatments and cure on the way..Your son will probably deal with it better than you think.

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