Hello
Posted by may1802
Hello, I'm new here and am looking forward to getting to know you all!
A little info:
We found out this year that my MIL has Huntington's Disease. She did have a family history of it (a couple of generations back), but when her father passed away in his 40's, he had shown no obvious HD symptoms. Because of this (and the then-current assumption that if you had HD you would start showing symptoms in your 30's and if you didn't you did not have HD), the family assumed that he did NOT have it. My MIL was also well past her 30's and no one suspected any symptoms in her either, so again, we thought we were "safe".
In the last 6-7 years we started noticing unusual behavior and after much confusion and researching, the family started to become concerned that she *might* have HD. Looking back, I actually think it has been going on at least as long as I have known her (11-12 years) but we just didn't recognize it. It took several years before we could convince her to be tested, but she finally agreed to go through the COE program and we got the results earlier this year. Her CAG is 42.
She moved in with us a few months laterand is doing pretty well. We have seen some decline, even since she has been here, but overall seems to be doing well.
My husband decided that he wanted to know whether he was Gene positive and so he went to his Dr. and had the blood-work done. We got the results this week and his CAG is 43. Thankfully, he is currently asymptomatic.
We are still trying to process it all! We have faith that God will not give us more than we can handle and that He is, and always will be, our strength. I especially am still reeling a bit from it all. Even though we do have this terrible illness to deal with, we feel so very blessed that we have had this, symptom-free, time together and that we have the expectation of having several more years together before he becomes very symptomatic. We are just trying to make the most of the time that we DO have.
I have done much reading/researching since we became suspicious that my MIL might have HD and I have learned a lot, but I have even more questions and I think that, more than likely, most of those questions do not really have an answer.
A few of the questions, that probably don't have a *real* answer are:
-Is there any research that indicates if there is any way to predict age of onset based on CAG count? I know that a son usually doesn't start showing symptoms earlier than his mother, but his CAG is slightly higher than hers. What has your experience been (or situations that you are familiar with) with onset with a CAG in that range?
-I keep reading the word "soft" symptoms. I have the basic idea, but is there a link/article that discusses this more?
I GREATLY appreciate any advice/information you might have to share from your experience and I look forward to getting to know you all as we go through our HD journeys together.
Edited 1 time(s). Last edit at 10/15/2011 09:17PM by may1802.
A little info:
We found out this year that my MIL has Huntington's Disease. She did have a family history of it (a couple of generations back), but when her father passed away in his 40's, he had shown no obvious HD symptoms. Because of this (and the then-current assumption that if you had HD you would start showing symptoms in your 30's and if you didn't you did not have HD), the family assumed that he did NOT have it. My MIL was also well past her 30's and no one suspected any symptoms in her either, so again, we thought we were "safe".
In the last 6-7 years we started noticing unusual behavior and after much confusion and researching, the family started to become concerned that she *might* have HD. Looking back, I actually think it has been going on at least as long as I have known her (11-12 years) but we just didn't recognize it. It took several years before we could convince her to be tested, but she finally agreed to go through the COE program and we got the results earlier this year. Her CAG is 42.
She moved in with us a few months laterand is doing pretty well. We have seen some decline, even since she has been here, but overall seems to be doing well.
My husband decided that he wanted to know whether he was Gene positive and so he went to his Dr. and had the blood-work done. We got the results this week and his CAG is 43. Thankfully, he is currently asymptomatic.
We are still trying to process it all! We have faith that God will not give us more than we can handle and that He is, and always will be, our strength. I especially am still reeling a bit from it all. Even though we do have this terrible illness to deal with, we feel so very blessed that we have had this, symptom-free, time together and that we have the expectation of having several more years together before he becomes very symptomatic. We are just trying to make the most of the time that we DO have.
I have done much reading/researching since we became suspicious that my MIL might have HD and I have learned a lot, but I have even more questions and I think that, more than likely, most of those questions do not really have an answer.
A few of the questions, that probably don't have a *real* answer are:
-Is there any research that indicates if there is any way to predict age of onset based on CAG count? I know that a son usually doesn't start showing symptoms earlier than his mother, but his CAG is slightly higher than hers. What has your experience been (or situations that you are familiar with) with onset with a CAG in that range?
-I keep reading the word "soft" symptoms. I have the basic idea, but is there a link/article that discusses this more?
I GREATLY appreciate any advice/information you might have to share from your experience and I look forward to getting to know you all as we go through our HD journeys together.
Edited 1 time(s). Last edit at 10/15/2011 09:17PM by may1802.
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Re: Hello October 07, 2011 11:58PM |
Registered: 12 years ago Posts: 95 |
Hi May,
I'm new, too, and while I don't know that I'm able to answer your questions (and I think you're right, there are no "real" answers), I wanted to say "welcome," and assure you that you'll find lots of support, from some really kind people, on this forum.
While there is certainly an inverse correlation between CAG count and age of onset, as you probably know, CAG repeat number accounts only for some of the variability in age of onset, severity of presentation, etc. I believe it has been estimated that repeat number accounts for about 20% of that variability.
I cannot speak from experience myself regarding this, but I'll bet you will find others who share accounts of relatives with HD, even in later stages, who were not violent. I'm not sure about statistics regarding the likelihood of violent behavior, though, and I suspect that such a statistic would be difficult to come by, as it's a fairly subjective thing to measure (especially when you're considering verbal violence). I imagine, too, that where a person is diagnosed as having HD, or as being gene-positive, every bit of irritability can begin to be questioned by relatives (e.g., "Is this HD-related?), whereas, if the person did NOT have HD/were not gene-positive, an irritable day or moment might be seen as perfectly normal--we all get irritated from time to time, right? (And the same thing happens, of course, with forgetfulness, clumsiness, the occasional twitch, etc, where people are gene-positive or at-risk--everything comes to be seen as a potential symptom of HD!)
It sounds like you have a great outlook, in that you're doing the best to make the most of the time you DO have, doing research, and being grateful for what you've got now.
Are your children at-risk? Based on your message, it sounds as though they are probably pretty young. I'm so sorry that you are dealing with the relatively new discovery that HD is in your family, and that you have so recently discovered that your husband is gene-positive. Glad you are here.
Sincerely,
Bluegrass
I'm new, too, and while I don't know that I'm able to answer your questions (and I think you're right, there are no "real" answers), I wanted to say "welcome," and assure you that you'll find lots of support, from some really kind people, on this forum.
While there is certainly an inverse correlation between CAG count and age of onset, as you probably know, CAG repeat number accounts only for some of the variability in age of onset, severity of presentation, etc. I believe it has been estimated that repeat number accounts for about 20% of that variability.
I cannot speak from experience myself regarding this, but I'll bet you will find others who share accounts of relatives with HD, even in later stages, who were not violent. I'm not sure about statistics regarding the likelihood of violent behavior, though, and I suspect that such a statistic would be difficult to come by, as it's a fairly subjective thing to measure (especially when you're considering verbal violence). I imagine, too, that where a person is diagnosed as having HD, or as being gene-positive, every bit of irritability can begin to be questioned by relatives (e.g., "Is this HD-related?), whereas, if the person did NOT have HD/were not gene-positive, an irritable day or moment might be seen as perfectly normal--we all get irritated from time to time, right? (And the same thing happens, of course, with forgetfulness, clumsiness, the occasional twitch, etc, where people are gene-positive or at-risk--everything comes to be seen as a potential symptom of HD!)
It sounds like you have a great outlook, in that you're doing the best to make the most of the time you DO have, doing research, and being grateful for what you've got now.
Are your children at-risk? Based on your message, it sounds as though they are probably pretty young. I'm so sorry that you are dealing with the relatively new discovery that HD is in your family, and that you have so recently discovered that your husband is gene-positive. Glad you are here.
Sincerely,
Bluegrass
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Re: Hello October 08, 2011 07:01AM |
Registered: 18 years ago Posts: 1,523 |
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Re: Hello October 08, 2011 11:16AM |
Registered: 14 years ago Posts: 456 |
hello
im 24 year old mum of 3,5 year old. Found out that my mother has a huntington disease, (my parents split up when i was four and i lived with my dad, not having any contact with my mother) i am really scared to go for a test to find out the results. Have seen many videos and its the scariest thing i have ever seen. im also worried about my son since i am in separation with my husband for a last year i'm not sure what should i do. if first symptoms going to show in the next couple of years, especially i havent got any family around me. i would really like someone to tell me how does it feel, im thinking the worst its not knowing and waiting, because if i am possitive maybe i would live my life difrently make the most of it. im never been easy outspoken person but right now just feel that really need anyone next to me with a good word
im 24 year old mum of 3,5 year old. Found out that my mother has a huntington disease, (my parents split up when i was four and i lived with my dad, not having any contact with my mother) i am really scared to go for a test to find out the results. Have seen many videos and its the scariest thing i have ever seen. im also worried about my son since i am in separation with my husband for a last year i'm not sure what should i do. if first symptoms going to show in the next couple of years, especially i havent got any family around me. i would really like someone to tell me how does it feel, im thinking the worst its not knowing and waiting, because if i am possitive maybe i would live my life difrently make the most of it. im never been easy outspoken person but right now just feel that really need anyone next to me with a good word
Hi May,
Welcome to the forum! There have been several discussions on here regarding CAG counts. I believe that you can do a search to find them. As far as violent tendencies, not everyone experiences them, but unfortunately my husband did/does. he has been in a Nursing home for almost a year now because he was verbally and physically abusive to me and our children. He was not this way before HD. It's very sad because our daughter basically wants nothing to do with him because of the way he has treated her. It was so bad that I was not able to leave him home alone with the kids. I was very afraid. If you notice ANY sign, please get help. I know that some people are greatly helped with medication, but that was not the case for us. I'm not trying to upset you, just want you to be on the lookout. How old are your kids? Mine are 19, 16 and 5. We found out about HD 3 years ago.
Welcome to the forum! There have been several discussions on here regarding CAG counts. I believe that you can do a search to find them. As far as violent tendencies, not everyone experiences them, but unfortunately my husband did/does. he has been in a Nursing home for almost a year now because he was verbally and physically abusive to me and our children. He was not this way before HD. It's very sad because our daughter basically wants nothing to do with him because of the way he has treated her. It was so bad that I was not able to leave him home alone with the kids. I was very afraid. If you notice ANY sign, please get help. I know that some people are greatly helped with medication, but that was not the case for us. I'm not trying to upset you, just want you to be on the lookout. How old are your kids? Mine are 19, 16 and 5. We found out about HD 3 years ago.
Thank you all for your replies and support!
Edyta- So sorry you are in such a difficult and scary situation! It is hard to make the decision, whether to test or not! One of the reasons DH decided to test, was so that we COULD know how to plan for our future. We knew that we would be making different choices if we knew that he was HD+. Hope you can come to some peace with all of this!
We haven't seen any violent tendencies with my MIL (and DH is still asymptomatic), that just happens to be one of my greatest fears about HD. Our oldest child is 9.
Edyta- So sorry you are in such a difficult and scary situation! It is hard to make the decision, whether to test or not! One of the reasons DH decided to test, was so that we COULD know how to plan for our future. We knew that we would be making different choices if we knew that he was HD+. Hope you can come to some peace with all of this!
We haven't seen any violent tendencies with my MIL (and DH is still asymptomatic), that just happens to be one of my greatest fears about HD. Our oldest child is 9.
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Re: Hello October 10, 2011 11:37AM |
Registered: 13 years ago Posts: 54 |
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