If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • Your opinion please...

    [Your opinion please...]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 01-02-03 16:58

    Ok... I need a little reality check here and welcome ALL comments. I received an email a few days ago and it was not a typical email and I wanted to know what your thoughts were.

    1. I was told the message board only showed the bad side of HCM and that there was too much time spent on "problems".

    2. I was told that I need to remind people that we are all different and need to be evaluated as individuals.

    Here is where I need some input and please tell me the truth.

    I sometimes think I say...were all different a little too much... is my point getting through?

    I also think many of us have shared some major happy news here on the board and have been highly supportive of many during difficult times... is the board to much of a downer??

    The only way to make the HCMA a better organization is to hear what you want and need....please let me know your thought.

    Thanks,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Reenie (---.snbrca.adelphia.net)

    Date: 01-02-03 17:13

    Dear Lisa,

    I really think that this site is wonderful. It does have a down side, BUT we all need a reality check sometimes. There is also a lot of good here. We all share good and bad here. It's like this is the only place where others can understand what we're going through.

    I feel you do a great job of reminding us that we're all different. Almost every time someone asks for advice, you inevitably say to call you at the office so we can chat person to person so as not to give ideas to others that may not apply to them. Also, when we talk about things that help some of us, you remind us that what is good for one is not necessarily good for the other.

    Just my two cents worth.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 01-02-03 17:36

    Dear Lisa

    We say "everyone is different" is just about every single post.

    And isn't the WHOLE POINT of this board to deal with problems?

    We can't be all things to all people. I believe that there are some who don't think we are strident enough about the sudden death risk, for example.

    I think that people come here seeking solace and answers to very, very hard questions and problems. And, let's face it, everyone who has HCM but is living a perfectly normal (or close to) is not on the board asking a lot of questions and sharing their stories ---they are out living their life. The people who need the most help are the ones who are here --those who are dealing with the worst problems of HCM.

    I respect everyone's opinion of the board very much, but the reality is that there is a lot of heavy duty stuff that comes with HCM and that is why were are here--to help people sort it out.

    Does this person feel that the HCMA is not supportive enough or helpful enough? Then I would be worried.

    And the new message board is divided up into topic areas, so people will be able to spend their time on the aspects of HCM that are important to them and ignore the others.

    My 2 cents.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Thumper (---.client.attbi.com)

    Date: 01-02-03 17:46

    I would like to cut and paste Reenie's post- as I agree with her statement -it may be the only place where others UNDERSTAND both good and badof HCM.

    I log on everyday and really enjoy the information exchange.

    No you do not say "everyone is different" too often,only when it applies.

    I also enjoyed very much the Post Topic of clean jokes and good news; you should initiate that more often. Life is to short, lets have a little fun.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Tom (---.eosinc.com)

    Date: 01-02-03 19:39

    My first thought is that we have both good and bad on these message boards. But, after more thought I think that we do tend to lean toward the negative. However, I think that's because of the cautious stance we have to take regarding HCM. As previous posters have already said, we are all different so one person's ability to do X does not necessarily mean that other readers are the same. This should be clear to all members.

    The one positive that seems to be reaffirmed on this board continually is that most HCM patients live a normal life span or longer. That's good.

    I'm looking forward to seeing the new site and the new message boards. It sounds like this will help to categorize our discussions. I'm hoping for a research-related topic where we can chat about the various research that is going on to treat and/or cure HCM. I'd like to discuss these things as well as general cardiovascular health and nutrition with others on the board.

    Another thought Lisa... it would be really informative if you had a page that summarized the info on the HMCA members, such as: age, age at diagnosis, form of HCM, meds, treatments, etc. You could keep it all anonymous of course, but I think people sometimes read a negative/symptoms bad post on here but don't realize that maybe that member has lived with HCM for 40 years and just got out of surgery or something. Make sense? Just to glance at statistics and realize how people are LIVING with HCM.

    I'm about to become an activist here, Lisa. You and Sarah need to email me about meeting in Chicago. I'm 3 hours south but I'd try to drive up.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Kat (---.proxy.aol.com)

    Date: 01-02-03 20:05

    Lisa,

    I am very surprised that someone would have the reaction you described and make those comments. Is it perhaps someone very new to the board who has not yet had the chance to read a wide variety of postings? For someone like me who has been reading steadily for a while, I agree that the reminder of us all being different seems very prevalent.

    As far as the overall "tone" I would have to say that from my perspective it is so overwhelmingly cheery and encouraging that I never dare write about any of my personal bad times and difficulties. If I mention negative things it is generally just to reassure another writer that they are not alone.

    Altogether, I would say to consider where that particular critic is coming from. However, asking the membership as a whole what they think can't be faulted. Stop worrying!

    Kat

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 01-03-03 02:23

    Lisa.

    Since I have been actively engaged at this positive site I have learned several important things.

    1. Since my diagnosis 12 years ago I knew practically nothing until I began reading this board.

    2. I was not taking my condition nearly as seriously as I should have been.

    3. Knowing what I do and wondering now what, I realize I am not alone with HCM.

    4. Knowing the potential for debilitation with HCM I now also know that someday I will probably be old enough to be considered an old geezer.

    The “negative” messages have spurred me on to research and discover helpful data relevant to my HCM. I have often read these messages and realized how incredibly blessed I am not to be in much worse shape. Some of those negative messages have come from people who are much more limited than I in life and yet their attitude is so upbeat, what an example!

    Your constant message is to find out “your HCM particulars” and not simply go with generalities.

    So while the individual who wrote you is completely entitled to his/her opinions, I have found the board to be positive and supportive, real with the problems, and chock full of helpful information. I log on several times throughout the day. Thanks for the hard work.

    Leon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: faith (---.214.69.32.Dial1.Boston1.Level3.net)

    Date: 01-03-03 03:18

    I'm with Leon and Tom. You're doing fine. I don't like the jokes and cheery spam that could creep in to the web site were it not serious in tone. I'm not on board to be continuously bolstered. I'm here to listen and talk and learn and help.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Amy (---.proxy.aol.com)

    Date: 01-03-03 05:02

    Lisa,

    First Happy New Year!

    Here's what I think:

    There are thousands of people out there with HCM. Most of them lead virtually normal lives. In general, these are not the people who visit the board, or call you for advice...because they don't need your help.

    To some degree, this board gives a skewed message about HCM because the people who post are the ones with the "problems." THey need help, and this is the only place they can come. We do read many horrific things here, because where else can these people go??

    To some people this board may be dark and negative. To others it is a light in the darkness. What you are doing helps people in some of the worst moments of their lives.

    If I read this board, and had no clue about HCM I may get a skewed idea of the condition. However, you can not be everything to everyone. What you are doing is phenominal (spelling)...and it is saving lives.

    Love Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Amy (---.proxy.aol.com)

    Date: 01-03-03 05:02

    Lisa,

    First Happy New Year!

    Here's what I think:

    There are thousands of people out there with HCM. Most of them lead virtually normal lives. In general, these are not the people who visit the board, or call you for advice...because they don't need your help.

    To some degree, this board gives a skewed message about HCM because the people who post are the ones with the "problems." THey need help, and this is the only place they can come. We do read many horrific things here, because where else can these people go??

    To some people this board may be dark and negative. To others it is a light in the darkness. What you are doing helps people in some of the worst moments of their lives.

    If I read this board, and had no clue about HCM I may get a skewed idea of the condition. However, you can not be everything to everyone. What you are doing is phenominal (spelling)...and it is saving lives.

    Love Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Glen (65.247.42.---)

    Date: 01-03-03 05:52

    Lisa, I have posted many times that I was diagnosed over 30 years ago and up until last year I did not know another person with HCM.

    This forum changed that and allows me to follow many other HCMers, some just diagnosed, some with big problems, some with small and some who have just lost someone, but because of this site they know how they compare and can relate with others. As for people just diagnosed you cannot sugar coat the news with too much positive aspects without running the risk of having them pass on what has to be done.

    And yes you do remind people and I've also seen many others tell others to seek an HCM specialist and that all HCMers are different many many times.

    HCM kills and people need to know by hearing others stories and advice right down to the worst case scenario and it's hard to put a positive note on that.

    This is an information forum, not a funny thing happened to me on the way to the hospital chat room, I've seen many pieces of humour here, I try it once in awhile myself and I also see many positive moments, people who are feeling better because on an operation, ablation or new medication, even in death, you feel the pain for their loss, but then follow their recovery as they report they are stating to feel better and even go on to take their loss to a new level and become active in the community on behalf of HCM.

    I think the most absolute, most important positive thing this site provides is the opportunety for people who are hurting or scared to vent with like people. Hurt and being scared are not positive when they are happening but can be over time and that is life's lessons and we were put on this earth to experience the bad with the good and then it's up to us to make of it what we can.

    I would just as soon not have HCM and never have to visit this site, but I have it and I cannot think of a better group to spend it with.

    This in itself is a positive thing, so keep up the good work.

    Sorry for ranting, but I cannot see where this place is not positive.

    Good luck and stay well

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Lisa Salberg (208.47.172.---)

    Date: 01-03-03 05:53

    Let me give a little more information about the original email that lead me to the original posting - -

    I will maintain the confidentiality of the writer...

    The writer has a teenage boy with HCM - he now has an ICD - he wants to play sports, the docs say no. I think she is upset at the entire situation, and I do not blame her at all for being upset, I know I would be if I were in her shoes.

    I posted the orignial message to here YOUR thoughts...and hope that she too will read them.

    My heart is with her and her son during a difficult time.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-03-03 06:13

    Dear Lisa,

    As we all know, the initial adjustments are the hardest. If you on'ly want to hear good news, then anything else will not be comfortable for you. While Adam P violated several board rules, he did speak from experience when he said he was glad that he has learned to live without sports and leads a good, happy life without them. I suspect that there are many who feel the same. While you want your kids to be happy, they only learn by going through tough times. I know I'm a better person for all the unhappiness I've dealt with. You can't always make your kid's life perfect and smooth --and you shouldn't. Learning to deal with the limits life has given you is part of the process.

    There is a woman who lost the use of her entire body but her face. She still wrote a novel, one eyebrow movement at a time.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Richard Miller (---.cae.bellsouth.net)

    Date: 01-03-03 06:40

    HEY PEOPLE tHAT ARE DOING WELL AND NOT HAVING ANY PROBLEMS , DONT NEED TEH HELP THIS SITE PROVIDES BUT I BET IF THEY KNOW ABOUT IT AND START "FEELING STRANGE GOINGS ON "THEY WILL BE GLAD THEY HAVE SOMEWHERE TO COME ASK OTHERS ABOUT THEIR EXPERIENCES.ESPECIALLY WHEN YOU HERE FROM YOUR DR. "ITS ALL IN YOUR HEAD" AND THAT MAY BE TRUE BUT ITS NICE TO KNOW OTHERS HAVE THE SAME HEAD PROBLEMS ALSO!! RICH

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-03-03 07:07

    Dear Rich,

    Thank you for posting, but I thought you would want to know that using ALL CAPS is the Internet equivalent of yelling. I'm sure you didn't mean to yell.

    Thanks,

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Susan (---.ceg.com)

    Date: 01-03-03 07:11

    Lisa,

    I don't post very often on this board BUT I read it every single day. The information that is posted here - Good & Bad- is invaluable. Please don't change anything. You remind us that we are all different often enough and I for one would hate to see this forum change even a little. Well, like I said, not much for words but I really needed to give you my support on this one. Thanks for the good job!!!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Margie (---.proxy.aol.com)

    Date: 01-03-03 07:39

    Lisa,

    I spoke with you last summer about my HOCM and you presented

    the facts-good and bad. I didn't want to accept that my obstruction had

    reached a critical level. I felt at peace everytime we spoke. You gave

    information,dr.s names, and spoke with Dr. Maron to get my questions

    answered.

    Last May 29th I had surgery(myectomy) done by Dr.Kouchoukos

    and it was very successful. I can walk up steps without gasping for air

    and clutching my chest. Having this surgery changed my quality of life.

    I have a defib. that I have checked every 2 months until it needs a new

    battery. I had it placed in July of 1999 and it's apparently getting close

    to running out of charge.

    I have found this site and your book to be honest when presenting

    this disease. My heart goes out to all of those going through difficult times.

    Please keep up the GREAT work and loving support.

    God bless you and your wonderful staff.

    Yours Truly,

    Margie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Susan Y (---.wab.kconline.com)

    Date: 01-03-03 08:26

    Lisa, I for one have read this board every day since I found it early last year.

    (I had been under the impression that HCM was very rare).

    Today I am three weeks post op Myectomy. I have known about my HCOM for 29 years, I have watched my father struggle with his HCOM for that same amount of time and also watch my son age 13 go through his. This board has given me hope in knowing my family isn't alone in all our struggles. When I read of others problems I can see my own.

    I am constantly reminded by your words that we are all very different, and I find that very encouraging. Without this board I wouldn't have known that I even had the option of seeing a specialist. (Which, I have been told could have improved my quality of life years ago.)I can't change the past, but I have found hope and comfort here.

    I just wanted to put my two cents in..... I find this board "very encouraging". I also am a big fan of the "search button". I look up specific problems of my own to see how everyone else has delt with them.

    I have said it before and I will say it again, Thanks for all you do Lisa. God Bless.

    Susan Youngblood

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Janice (---.rasserver.net)

    Date: 01-03-03 09:04

    If it wasn't for the HCMA board I really think that I would be thinking that I really am losing my mind about different pains that I feel. It is so nice to know that these pains are HCM related and not my imagination. I am talkng about chest, leg, arm, hip pain, trouble sleeping at night, etc. To my way of thinking, keep up the GREAT work.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Glen (65.247.42.---)

    Date: 01-03-03 09:10

    OK everyone, Group Hug.

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-03-03 09:51

    {{{{{{{{{{{{{{{{{{{{{{{{{{{HHHHHHHHHHHHHHHUUUUUUUU UUUUUUGGGGGGGGGGGG}}}}}}}}}}}}}}}}}}}}

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Lisa Salberg (208.47.172.---)

    Date: 01-03-03 10:05

    oh please I am so not a group hug person....

    I just really wanted to make sure I was moving in the right direction... I hear you all loud and clear....

    no need to adjust the course... full speed ahead!

    thanks,

    lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Mary S. (---.net592.fl.sprint-hsd.net)

    Date: 01-03-03 10:57

    Ok Lisa doesn't like group hugs. I think she should get a noogie and a wet willie. My cousins used to do that to me and the wet willie is the worst!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Garen (---.du.kgfs.pldi.net)

    Date: 01-03-03 12:51

    I'm new reader. My opinion - don't sugar coat any part of this. It's a fact that we have been dealt this hand, let's live with it and learn from others. A site like this should be for info and understanding of that info. If I want smiles, I'll look at a joke site. If I want good news, I'll get out my Bible. Tell me straight about HCM even if it means bad news.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Bryan (---.bos.east.verizon.net)

    Date: 01-03-03 13:24

    1. I was told the message board only showed the bad side of HCM and that there was too much time spent on "problems". Is there really a good side? I think most of us would rather not have HCM or a family member that has it but the reality is we do and along with it comes bad sides.

    2. I was told that I need to remind people that we are all different and need to be evaluated as individuals. This I think is posted enough times. The only thing is we are all different and should be evaluated as individuals but the underlining matter is we have HCM. If someone is asymptomatic does that mean they should be out weight lifting or running 3 miles? I think this Lisa, Sarah and everyone else that has to do with this website does a wonderful job.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 01-03-03 13:32

    lisa,

    i also don't post very often but i do come to the board and read the new messages and sometimes the old ones. this board has helped me alot since i found out i had HCM and was pregnant. keep up the good work.

    amanda

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Brody (218.145.25.---)

    Date: 01-03-03 13:35

    Lisa,

    as a relatively new reader of this board I can only relate my experience and what you have provided me.

    Because of my background, training, and locations in the world (Seoul, Korea), when my son was recently diagosed with HCM I needed several things - this board has provided those in spade.

    - I needed factual information that is not sugar coated, but straight. As a technologist and a loving father, I wanted to rapidly understand the problem, its cause, alternatives, what to expect in the future with each, support emotionally for me and my son, and an avenue to point me in the right direction.

    - I needed to see how other parents and children are dealing with change in life styles. My son has practiced martial arts for over 10 years with Korean masters and has black belts in two martial arts, he was a cross-country runner on his High School team, enjoyed 5k and 10k fun runs, likes golf, hiking/backpacking (Eagle Scout), and was considering the military as an option in his future. All of these except hiking, light jogging, and golf are gone. This board has let me see both sides of this - from those parents who believe the child's quality of life is important to young athletes who are thankful their parents forced a life style change.

    - I continue to read and need information I see here daily. It give me some footing at a time our family must make changes and lets me know we are not the only one's in this world experiencing the stress of those changes.

    Thank you Lisa and all who provide this board and service....you have it right, don't change it.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 01-03-03 14:40

    Lisa,

    I do believe we mostly post the negative, but it is when we are feeling bad or needing information that the board is where we go. I usually don't post that I am fine and need no help or advice, but when something happens that I need answers for. By the way, this is not the situation only on this board. It is the same with other "issue" boards I have been a part of.

    Everything here is good as far as I can tell. Thank you and keep up the great work!

    Jerry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Robert Hartwell (---.focal2.interaccess.com)

    Date: 01-03-03 15:49

    All,

    Living with HOCM for a number of years, knowing it was a rare condition, and not knowing about this board made me feel very alone. I found that most people could not relate to my condition and I always had to teach HOCM 101 before they could understand. When I was recommended for surgery, I found the weight of that decision to be, quite frankly, overwhelming.

    Then I found this board one night and was up to 3 AM reading post after post, negitive and positive. I found a group of people who shared my problems and were eager to help me out. When I got to meet Howard Mirchin in Cleveland, it was so nice to talk to someone that UNDERSTOOD!

    As a result, I read this board everyday. I comment when I think my opinions will be helpfull, and I am amazed at the tremendous variation of HCM and symptoms that each of us have. We are all different, and that is stressed more than anything else, except possibly, "see an HCM specialist."

    Everyones comments are valuable, positive and negitive.

    Bob Hartwell

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Donna (---.palmer.mtaonline.net)

    Date: 01-03-03 19:12

    I think we all are doing a good job with the hand that we have been given. I know that I would not know much about HCM without this board. Thank all of you for your help,and the good and the not so good news on the board.

    Donna

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: connie (---.proxy.aol.com)

    Date: 01-03-03 19:54

    Well I dont post here everyday...but I do read here everyday. This is the only place I can come where people know what Im talking about. No its not always so rosy and shiny.......I have laughed a bunch here and cried a river here. But I keep coming back for the support and because I feel connected to everyone. I think the "MOM" who wrote what she did is very frustrated and looking for answers to the "WHYS" of the monster called HCM.

    I think we all have had moments when we find fault with HCMA out of anger, frustration, sadness, ect.......but to me its what I need for me right now. I wish the best for "MOM" and her son.

    Connie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Mary S. (---.net308.fl.sprint-hsd.net)

    Date: 01-03-03 20:08

    I can't say in words how much this association has helped me. I believe it may have even saved my life. I almost took a diagnosis of being perfectly normal (Lisa will get me on this! I was never normal) when I had 4 of 6 risks for sudden death. I have shared my troubles here but my triumphs as well! You have no idea how good it felt when I had everyone cheering me for my completion of my EMT certification! Like I said before you guys have become apart of the family support I never had from my own family!

    Keep up the outstanding work!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Dolly W (---.proxy.aol.com)

    Date: 01-04-03 04:26

    Before I found this site, I thought that I had educated myself with the ins and outs of HCM/HOCM. Boy, did I have lots to learn! I dealt with this condition by myself for 22 years. The cardiologists that managed my case didn't even have much info to offer. Due to my ignorance, I almost agreed to a procedure that could have been very dangerous for me. Thank God that I found this message board! After posting, I spoke with Lisa, who then made some recommendations. Working with my NEW cardiologist, I was able to go to Mayo to have a myectomy. I am now two months post-op and doing great! My point being, that although there are many "negative" posts, there are equally "positive" posts and events due to the dedication of Lisa, Sarah and everyone who "supports" one another on this board. I think that the site is balanced, and a godsend to those in need.

    God Bless!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Tim Stewart (---.dsl.dytnoh.ameritech.net)

    Date: 01-04-03 06:22

    Well, let me add my $0.02 worth...

    I believe that the message board is effectively helping to meet the goals and objectives that are set for the HCMA which are listed on the opening page of the website. To quote the main page of this site: "The Hypertrophic Cardiomyopathy Association is a not for profit 501(c) (3) organization formed in 1996 to provide information, support and advocacy to patients, their families and medical providers." Additionally, the first objective listed for the HCMA is: Develop and maintain a network of support for people with HCM and their families.

    I feel that this message board provides information and interactive support to those who seek information and answers to their questions. I believe that we cannot and should not hide or "sugar coat" the information and answers to the questions. As a support group I think we must remain truthful and honest about how people are living and dealing with this condition.

    I believe that finding others who are experiencing the same symptoms and conditions is absolutely essential in surviving with this condition. We can all learn something from each other and thus only become stronger ourselves.

    As the new website is released with individual discussion areas, I think people will find the updated message board provides forums that are more focused on specific issues and support that is tailored to each person’s needs of the moment.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 01-04-03 07:50

    wow..what a wonderful thread.. I have learned so much from you all and really feel that as we move into 2003 we will become a stronger and more valuable organization!

    Thank you all for you input and I do hope the mom who sent the email has read this thread, thought it out and sees what it is that the HCMA is working to accomplish...

    Thanks to all!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Your opinion please...]

    Author: Steve (---.proxy.aol.com)

    Date: 01-04-03 19:42

    Lisa,

    This message board is a Godsend to many. You can see this from all these posts. I check it almost every day. I post rarely, but this is such great tool and way for us HCM'ers to comunacate. Good, bad, and ugly, that's life You and this board help us all to deal with it. Information is knowledge. Thank you so very much for all you do. Keep it up and may God continue to bless us, with you!!

    Steve

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    [Re: Your opinion please...]

    Author: Pat H (---.proxy.aol.com)

    Date: 01-04-03 20:02

    The people that visit this site all come for different reasons. Some to get help find doctors who understand HCM, others to help them learn about all the different aspects of HCM. Some of them need words of support while going thru a bad time. But we all can choose the messages we read and respond to. I have not found another site that has put forth as much help as this site. I glad that I was able to get to the top HCM doctors. That would not have been possible without this site and the people who work so hard to help us all. I do have a hard time reading of the deaths that happen, but that is part of life even without HCM. It would be great if we all had only good things to share on the site, but HCM doesn’t allow that to happen. It can be hard say and do the right thing for every person as we all think and do thing differently. Is that the way life is?

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    [Re: Your opinion please...]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 01-05-03 09:11

    Dear Lisa,

    I believe that this message board helps prevent us from becoming too complacent about HCM. When I first discovered the board, I had been lulled into believing that a pill a day was all I needed and that one appointment with my cardiologist and electrophysiologist per year would be sufficient to follow my progress. Through you, Lisa, and an HCM specialist (recommended by you), I became alerted to the fact that I had several risk factors for cardiac arrest. Subsequently, I had an ICD implanted.

    Through the board I have learned, shared, cried, laughed. Don't let anyone tell you that it is going only in one direction. I have seen so much variety of postings and information here. And what are we dealing with anyway? A very serious disease, more common than I ever dreamed (I was led to believe it was very rare).

    We are not here to sugarcoat, we are here to acknowledge the reality of our disease. There is something to be said for the ability to obtain an honest answer to an urgent question. I never once felt that the message board was a downer. To the contrary, it has lifted my spirits at times when I was down.

    What we want and what we are getting on this board is honesty and reality. Anything different would be a disservice to those who trust you and the board.

    With thanks to you and HCMA,

    Mary

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    [Re: Your opinion please...]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 01-05-03 10:49

    This was submitted by Faith on 1-03-03 and sums up my opinion quite nicely.

    "I don't like the jokes and cheery spam that could creep in to the web site were it not serious in tone. I'm not on board to be continuously bolstered. I'm here to listen and talk and learn and help."

    Amelia Haynes

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    [Re: Your opinion please...]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 01-05-03 11:54

    As I've said many times, I'm glad I discovered this website. I lost my little brother to HCM just three short months ago and didn't know where to turn. With this site and this message board I have learned lots of information about HCM. More than I can get anywhere....even the American Heart Association.

    The support I've received from this board is far greater than any "negativity" it has brought. This board wouldn't be helpful if we "sugar coated" everything. HCM is real and real people post here. Those like me who have lost loved ones or are living with HCM truly need a place to go to get correct informaton and "vent" every once in awhile.

    I've met a lot of people who are going through the same thing I am by using this board. I'm now using what I have learned and will learn to help make awareness of HCM and educate people about it.

    Thank You Lisa for doing such a wonderful job. You're sister is proud of you! All my best, Julie P.

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    [Re: Your opinion please...]

    Author: terri (---.dsl.chcgil.ameritech.net)

    Date: 01-05-03 12:57

    Hi Lisa---

    By now it seems as if you've gotten enough opinions, but I'd like to add mine as the mom of a 13-year-old girl who three months ago got an ICD. Don't change your approach. As a mother of a young daughter with this disease, the board and some of the depressing news on it has at times become more than I wanted to deal with. So I stopped reading for a few days. But believe me, I am so glad the information is there for me. Information is power and it is what makes me feel that I'm doing the best I can to prepare my daughter for dealing with this disease. Even more than that, I like having a place where I can ask the questions about quirky things having to do with medication---like headaches and joint pains----and don't feel that everyone thinks I'm nuts. Thanks and keep up the good work.

    Terri

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    [Re: Your opinion please...]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 01-07-03 16:20

    I thank you all from the bottom of my hypertophied heart for your amazing comments.

    Yes, I hear you all. Yes, we will continue in the same directions. Yes, I agree with all that you have said.

    Sometimes I think I am the one who gains the most from the HCMA - I have had the opporrtunity to meet so many of you (by phone or in person) and I have found so many wonderful friends. So thanks to each of you for sharing your thoughts and please feel free to offer suggestions at anytime if you can think of ways to improve OUR HCMA!

    Respectfully,

    Lisa

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    [Re: Your opinion please...]

    Author: DENNIS J.BASSETT (---.ts14.qui.ma.net1plus.com)

    Date: 01-08-03 03:26

    Lisa, Me and my family look at the board for support and suggestions as to how yo deal with my own situation.I find nothing negetive about it. DENNIS
    NOTE: This is a post from the previous forum message board.

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