[Calling all spouses, friends and family members!!!]

Author: Lisa Salberg (---.ipt.aol.com)

Date: 04-10-02 18:12

This is a message to all spouses, significant others, friends and families and secret admirers of those with HCM.

While those with HCM live with the daily "symptoms" of HCM, at the HCMA we understand that you too live with your own "HCM symptoms". I ask that you be active on this message board and offer support to others like yourself.

The fear of loving someone who is effected with a condition that can take them away from you is frightening. While those of "us" with HCM feel we have little control over the condition, you feel you have even less. In the past 6 years I have spoken to many families, significant others and friends who have shared their fears and tears with me.

I am calling out to you to communicate with each other and if you are the affected person encourage your loved ones to log in and meet others like themself.

I have been amazed over the activity in the past month on this message board and feel we have made great progress in providing support to those in need, let your families share in the process as well.

My best wishes to all,

Lisa Salberg

President

HCMA

973-983-7429

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[Re: Calling all spouses, friends and family members!!!]

Author: Trisha Rosokoff (---.proxy.aol.com)

Date: 04-10-02 21:48

Hi Lisa! The web site looks great! I haven't visited it lately, and I feel gulity! As soon as I saw your message board I found Andre's message. He is the exact same age as me, and we were both diagnosed when we were 12! Ironic! I emailed him about my myectomy and am still willing to talk/help anyone else who needs to ask questions, etc. I am probably going to get my AICD replaced this summer. This will be the first replacement. Joy! Hope all is well with your family. Thank you for all of your hard work!

Trish

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[Re: Calling all spouses, friends and family members!!!]

Author: Sarah Beckley (---.dsl.mindspring.com)

Date: 04-10-02 23:20

Dear Lisa,

While the issue of children (or not) was the final blow to my marriage, I know that if my ex had been able to talk to other spouses about living with an HCM patient, it would have made a big difference in our lives.

Something I mentioned last week, on the other board I moderate, was to make sure everyone living in your house knows what to do in case of an emergency. Any emergency! And where to find a list of your medications and your doctor's phone number.

Thanks for reminding us of how import it is to talk to each other.

Sarah

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[Re: Calling all spouses, friends and family members!!!]

Author: Frank Myers (---.proxy.aol.com)

Date: 04-11-02 15:19

You're so correct. Support of one's spouse and family is critical in total treatment process. I am the patient - 35-36 years - since I was age 34. My wife has stood beside me day and night, in emergency rooms, on the sleepless night, you name it. Without it, her support, it may have been a different outcome. I also have an AICD, which one lady indicated she has and going for her first replacement. Good luck to her, and I'm sure we, those who have AICD's, realize that we are the lucky ones. So many persons don't have the opportunity to survive the first attack. However, the medical treatments and technology are becoming more available as well as improved. Thank you for your concerns.

Frank Myers

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[Re: Calling all spouses, friends and family members!!!]

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

Date: 04-12-02 05:06

Hi again...

Thanks for sounding out on this topic guys! Being diagnosed with a chronic condition is a "family affair" and good communication keeps families together!

By the way HI Trisha! It has been a while since we sopke I hope your well and dont be a strange, I'd love to chat...so call!

Best to all!

Lisa

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[Re: Calling all spouses, friends and family members!!!]

Author: Sue (---.wmnsmd.adelphia.net)

Date: 04-13-02 18:50

Hi Lisa, When I read the title to your message, I thought for sure it would be about the upcoming Annual Members Meeting. I know the registration forms have gone out and the info is in the most recent newsletter, but the message board has been so busy, there have to be some users who are not on the mailing list. So, at the risk of being repetitive, I am going to encourage everyone to contact the HCMA office if they are not aware of this meeting. It will be held in New Jersey, May 31 - June 1, 2002. I have attended the past several years and learned so much, in addition to having met so many wonderful people. And yes, bring spouses, friends and family members! Great job, Lisa

Sue