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Hello all!
I have some feedback I would like to share with the board and comment publicly on a few issues.
Over the past few months we have been working with several families who are in the middle of the journey to understand HCM. Those of us who have traveled this road for a while can recall the pain involved in that adjustment period. One family said that it appeared that those on this board were "happy" to see new people diagnosed with HCM. I think I can speak for everyone in replying with this statement. We are saddened each time HCM is diagnosed as we understand the road ahead for that family, however at the same time we feel good about the fact that the person diagnosed now has the benefit of treatment and thereby a very good chance at a future.
The topic of exercise has come up a great deal in the past few weeks as well. I would like to be clear on several issues here - Those who wish to participate in competitive athletics (adult or child) must understand that the medical community (NOT the HCMA) has deemed this to not be in the best interest of those with HCM. It is one of the goals of this message board to share information that is in line with the information available in the medical literature.
Some people feared getting banned from the board for having opinions that were not in line with what they believed to be the position of the HCMA. All posters agree to the guidelines for this board during the enrollment process. Postings on this board that are not in compliance with that agreement will be deleted or taken down and the "poster" risks being terminated from the board (as is the policy with any message board). Having a difference of opinions is not grounds to being taken off the message board – in fact it opens up wonderful dialog that may help us all.
Sharing our personal experiences here on the board helps many people in many ways. The person posting has the opportunity to share, the reader has the opportunity to think, learn and comment and those who choose to "reply" have a chance to share there thoughts, experiences and comments and so on and so on... that is the strength of this tool and it has changed the lives of so many for the better.
Words are powerful and lack the personal touch we may pick up from body language or tone, I ask you all to remember this in your postings. I have been told that “we appear happy to have HCM”, “happy” is so far from the correct word. Again I think I can speak for most of us in saying that we would do just about anything to remove HCM from our lives, but we cannot. The question is what do you do when you MUST live with something? The answer, you learn to do it as best you can. That is what we do here in our little HCM community; we live with HCM as best we can. If I/we appear to by happy about HCM, this is an illusion, it is simply how we cope with our lives.
There are 2 words in my home that are not to be spoken – they are “hate” and “can’t”. I will break my rule for one minute…I hate that I can’t rid myself of HCM. So what are the options…live life and look forward. From my experience having a positive attitude is the key to survival.
I wish you all peace and good health,
Lisa Salberg
I have some feedback I would like to share with the board and comment publicly on a few issues.
Over the past few months we have been working with several families who are in the middle of the journey to understand HCM. Those of us who have traveled this road for a while can recall the pain involved in that adjustment period. One family said that it appeared that those on this board were "happy" to see new people diagnosed with HCM. I think I can speak for everyone in replying with this statement. We are saddened each time HCM is diagnosed as we understand the road ahead for that family, however at the same time we feel good about the fact that the person diagnosed now has the benefit of treatment and thereby a very good chance at a future.
The topic of exercise has come up a great deal in the past few weeks as well. I would like to be clear on several issues here - Those who wish to participate in competitive athletics (adult or child) must understand that the medical community (NOT the HCMA) has deemed this to not be in the best interest of those with HCM. It is one of the goals of this message board to share information that is in line with the information available in the medical literature.
Some people feared getting banned from the board for having opinions that were not in line with what they believed to be the position of the HCMA. All posters agree to the guidelines for this board during the enrollment process. Postings on this board that are not in compliance with that agreement will be deleted or taken down and the "poster" risks being terminated from the board (as is the policy with any message board). Having a difference of opinions is not grounds to being taken off the message board – in fact it opens up wonderful dialog that may help us all.
Sharing our personal experiences here on the board helps many people in many ways. The person posting has the opportunity to share, the reader has the opportunity to think, learn and comment and those who choose to "reply" have a chance to share there thoughts, experiences and comments and so on and so on... that is the strength of this tool and it has changed the lives of so many for the better.
Words are powerful and lack the personal touch we may pick up from body language or tone, I ask you all to remember this in your postings. I have been told that “we appear happy to have HCM”, “happy” is so far from the correct word. Again I think I can speak for most of us in saying that we would do just about anything to remove HCM from our lives, but we cannot. The question is what do you do when you MUST live with something? The answer, you learn to do it as best you can. That is what we do here in our little HCM community; we live with HCM as best we can. If I/we appear to by happy about HCM, this is an illusion, it is simply how we cope with our lives.
There are 2 words in my home that are not to be spoken – they are “hate” and “can’t”. I will break my rule for one minute…I hate that I can’t rid myself of HCM. So what are the options…live life and look forward. From my experience having a positive attitude is the key to survival.
I wish you all peace and good health,
Lisa Salberg
Yes, I believe being positive about HCM is the key. Sure it's hard being labeled as different and affected by that difference, but we must go on and embrace those that will embrace us. Sure people without HCM don't understand and in my opinion cannot understand fully. That is why they don't know are hospital stays, needles we take while there, echo, and all that other stuff. My bitterness and anger comes from ignorance and the fact that people continue to want to stay in the dark about it instead of trying to understand the situation.
(I just love this little guy)
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I am truly grateful for this site and glad that there is a place we can go share our world and living with HCM or in my case HOCM.
Ok I'm yelling (I'm an old rocker hence the you rock thing) Can you tell I love emoticons?
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