I am concerned for Terry when he is alone here at our house and I'm at work or traveling on business.

He can still walk, but easily loses his balance and falls.

I feel a medical alert would be good for when he is alone and its going to be hours before I will be home.

Susanne Waite

I know it would make me feel better if my husband would wear something at least when we are not at home - especially because he has other health issues as well as KD.

We do have the medical information in a "File of Life" magnet pocket that I got from the local hospital. It was sponsored by the hospital, local fire fighters and other businesses in the area. The magnetic vinyl pocket is designed to hold a card with your pertinent medical information and then you place it on the refrigerator in the kitchen, which is where Emergency Medical Personnel will look for them if they have to come to your house. I have added a KDA brochure to my husband's file.

I also remember a "Vial of Life" that was being promoted quite a number of years ago. It was similar to a prescription pill bottle with a document rolled up inside with similar information.

Information on the Vial of Life project can be found at http://www.vialoflife.com/

The only concern I have about Vial of Life is, since the information is stuck on your refrigerator door, it does no good when you are away from home. For people who travel I think the Medic Alert tag would make more sense.

Hello All,
Here is the address for medi alert
The prices are not bad, starting at 9.95 for a dog tag.
Here is the little write up about the free engraving they offer.

Free personalized engraving
After we have reviewed your Emergency Medical Information Record (EMIR℠) for accuracy, we will personalize your medical ID bracelet with your critical medical information and your unique MedicAlert member number. Only authentic MedicAlert medical IDs with the words "MEDIC ALERT" use this review process. No other company provides this free service.

http://www.medicalert.org/

Hope it helps.
JoAnn

JoAnn, you must work at medicalalert.org? Is there a way to get a group discount if a bunch of the men here were interested?

How many of you guys would be willing to wear a medical alert if there was a group discount???

Oh, and another idea - I bought a $5 dog tag at Petsmart at the kiosk that engraves itself and attached it to the keys my husband uses most. Not sure if the cost is still the same.

For what purpose would a KD patient need a medical alert bracelet? Is there something that medical personnel would normally do that could be detrimental to a KD person in an emergency situation? I am not sure...

The biggest concern I would think is if our throats closed up or we were choking on something. But if we are unconscious, restricted airway is the first thing that would be checked. A medical alert stating we are SBMA sufferers wouldn't change that.

If anything, it could serve to confuse an EMT or doctor since it is highly unlikely they will have heard of SBMA or Kennedy's Disease. After seeing a medical alert bracelet with information that they are unfamiliar with, they might actually withhold normal emergency treatment (epi-pen, defibrillator, etc) because they are afraid to do harm.

This message has been edited. Last edited by: jameson411,

There may be some confusion with posts here... I think some people are talking about a bracelet and others are referring to a "life alert" which would send a wireless signal to emergency personnel indicating you need help. A life alert would make sense depending on the stage of your KD.

You could just say, "Muscular Dystrophy" so as not to have treatment with held and than hopefully, a family member will be able to explain when notified.

Keeping the airway open is SO important. As you age with KD, choking may become more common even while sleeping.

Another good topic and thanks for all the input. I feel it is important that your hospital and doctors be aware that you have Kennedy's Disease. It is especially important for an anesthesiologist know since certain anesthesia may be harmful. It is also important that you be kept warm and have an inclined shoulder and head as much as possible.

As mentioned, choking is a serious concern. Pneumonia is a terrible side effect that needs to constantly be checked for. Certain drugs and anesthesia that can relax the muscles can also be a concern.

I carry a card in my wallet that addresses certain concerns and my doctor has a copy of the same information. You just want to make certain surgeons, anesthesiologists and your doctors are aware.