Exercise

[HCMA FORUM ARCHIVE]

[Exercise]

Author: Lucho Monserrate (---.com)

Date: 03-15-02 14:30

I have HCM, 39 year old male. I am just curious about what other people with this condition are doing as far as type and amount of exercise. I want to stay active and fit as best I can without taking any risks.

Thanks to all,

Lucho

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[Re: Exercise]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-15-02 17:24

Dear Lucho

Have you talked to your doctor about what you can and can't do? Everyone's HCM is different --some people are in line for a transplant and others have almost no symtoms, so the range of activity is really too broad to prescribe anything safe for YOU over a message board.

Lisa's book on HCM is a good resource on living with HCM, fyi.

In general, walking, yoga, tai chi etc are all low impact and pretty safe starting points if you are generally well overall. Never push too hard and listen to your body and your heart. Dizziness, chest pain, discomfort, etc. are all signs to stop no matter what you are doing -even just climbing stairs.

Keep us posted,

Sarah

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[Re: Exercise]

Author: Lucho Monserrate (---.com)

Date: 03-16-02 09:58

Sarah; I went to the NIH in Bethesda. Dr. Pananabazier was the physician who saw me. Have you heard of the HMC research at this hospital? Do you recommend a particular hospital to be seen at?

Thanks, Lucho

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[Re: Exercise]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-16-02 12:30

Dear Lucho,

LIsa, the HCMA president, is very familiar with the NIH. The HCMA is working on a database of HCM specialists nationwide, so they are people to talk to, really.

I've only ever been to Northwestern Memorial in Chicago and the Mayo Clinic in Rochester, MN, but I will say that the Mayo was/is amazing.

Take care,

S

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[Re: Exercise]

Author: Pat-Sub (---.intrepid.net)

Date: 03-16-02 14:19

Hi Lucho,

I also went to NIH and was in their study, also had the same doctor. It was not a good experience and by the grace of God I ended up at the Cleveland Clinic where I feel they saved my life. I strongly recommend you seek out an HCM specialist as this can make all the difference. NIH is more concerned with studying you than treating you. the HCM association can help you find the specialist thats the closest to where you live. God bless!

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[Re: Exercise]

Author: Lucho Monserrate (---.com)

Date: 03-16-02 16:35

Sarah: I live in Orlando, FL. Where do you recommend for me to go for treatment.

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[Re: Exercise]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-17-02 13:42

Dear Lucho,

I'm sorry if my previous post wasn't clear --but the HCMA office is the one with the database, not me personally. While I'm the HCMA's "official" represenative for this board, I do not work or live in NJ with Lisa (I'm in Chicago). Please call the HCMA directly (phone number is on the home page or the contact page --I guess I should learn it myself!!) to find out who best to see. Lisa and Ellen are both great, friendly and waiting to hear from you!

Best of luck,

(PS I've been told by others facts that concur with the previous post about the NIH's perspective.)

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[Re: Exercise]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-17-02 13:44

Here is the phone number ---it was on the Membership page...

Call: 8am to 8pm Eastern time ONLY please 973-983-7429

S

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[Re: Exercise]

Author: Jon Meyerson (---.proxy.aol.com)

Date: 04-04-02 11:55

Lucho,

I have just been diagnosed with HCM and am curious as to what you found out about exercise. My pain has gone away with a very small dose of beta-blocker. Since last week when I had the echo-cardiogram I have played doubles in tennis 2 times and feel fine. I am an avid tennis player and would like to continue, at least doubles. Any advice?

Jon Meyerson

Chevy Chase, Maryland

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[Re: Exercise]

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

Date: 04-05-02 01:01

Dear Jon,

HCM expresses itself differently in everyone and it is dangerous to make general statements about what people are allowed and not allowed to do.

Your best bet is to learn as much as you can about your condition, your strain, your family history, etc. Your family history is usually a good indication of what kind of HCM you have, however, treatments and surgeries are available now that never were for our parents and grandparents, so you have to take that into account, too.

If you have just been diagnosed, and you think you want to join the HCMA, please e-mail support@hcma-heart.com with your snail mail address to get on the mailing list. The newsletter has the latest research and lots of good stuff. The HCMA annual meeting is May 31-June 1st this year in Morristown NJ. They can also direct you to the specialists in your area and Lisa wrote a book on living with HCMA that you can buy, too.

Also, Lisa can tell you the right questions to ask your doctor to determine what your safe activity level will be.

Take care,

Sarah

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[Re: Exercise]

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

Date: 04-16-02 11:23

Lucho: Very good idea. Stay physically fit by exercising. However, check with your doctor first. I am age 70, I do step aerobics 6 days a week and I weight 180-85 which is very important to keep the weight down. If you take medication, follow the regimes faithfully. I have had many heart problems, over the years, and am doing relatively well at the moment. In fact, I came dowm with my condition at age 33. Follow the rules and you could reach a very productive and advanced age. Good Luck.