McArdlesDisease.org

These tips for people with McArdle’s Disease is bookmarked for quick access at the top of this website (instead of buried in archived posts) because some of these tips pertain to potentially life-threatening complications of the disease. You’ll learn more by reading below.

Critical Tips for People with McArdle’s Disease

While individuals with McArdle’s Disease are at a disadvantage for strenuous physical activities, they can lead relatively normal, healthy and active lives with just a little diet management and vigilance. However, it is really important to consider the following points for the safety of either yourself or those you know with the disease:

People with McArdle’s Disease should be extremely careful when swimming. I cannot stress this enough. The human body is not naturally buoyant in an upright position, and swimming or treading water is one of the most physically demanding activities a person can undertake. The painful symptom of limbs seemingly turned to stone as they run out of energy is merely an inconvenience on dry land, but in water deeper than one’s head, these symptoms truly present a critical danger. Because individuals with McArdle’s Disease literally run out of energy, they can in moments reach a point where their limbs simply stop responding. No amount of willpower or perseverance will overcome this; if you experience these symptoms in water of any depth, you are in grave danger. It is NOT recommended that people with McArdle’s Disease – no matter how confident, seemingly fit, or trained, ever swim alone and without some means of flotation within easy reach. If you have McArdle’s Disease and you try to go swimming on a whim, you are at a greater than normal risk of drowning through no fault of your own.

People with McArdle’s Disease should be careful when chewing solid foods. Many many people die a tragically and prematurely each year by choking on solid food. Most of the jaw, head and neck muscles involved in chewing and initiating swallowing are striated muscle dependent on myophosphorylase – the missing enzyme – in order to continue contracting. Anyone with McArdle’s Disease knows what it feels like to run out of energy in the middle of a big chewy bite of food. Without the proper energy at your disposal to operate those muscles involved in chewing and swalling, your danger of choking is increased dramatically. Please – exercise patience when chewing solid or tough foods. Make it a point to simply stop, even if you’re in a hurry, and wait 30 seconds or more until the energy returns to your jaws and neck. There’s no reason to rush eating; whatever it is, it can wait and is not important as your life. Please be careful when chewing if you have McArdle’s Disease.

People with McArdle’s Disease should be careful when operating vehicles without power steering. As silly and specific as this sounds, it’s a legitimate hazard. Traditional “armstrong” steering demands that the vehicle operator manipulate the steering mechanism of the vehicle manually with little or no assistance from hydraulics. If you have McArdle’s Disease and are operating such a vehicle, you may run out of energy in your arms right when you need it most, perhaps while steering a large pickup truck with a heavy front and and steering rack. It’s probably not a very COMMON risk, but it’s there nonetheless, and being cognizant of this limitation may spare you from an unnecessary collision or accident related to a steering failure.

People with McArdle’s Disease should, regardles of location, always be cognizant of where they are with respect to staircases, exits, elevators, escalators, and any potential opportunities to experience muscle failure episodes. For example, while traveling in a tour group while on vacation in Athens, your tour guide may rush your group up the steep and numerous steps of the Acropolis. There’s nothing you may be able to do except simply be prepared with proper warm up, or to leave the tour group entirely. Alternatively, you can position yourself near the front of the group and advance ahead in such a way that you give yourself a “buffer” with which you can periodically recover while your group catches up with you. If you are in good enough physical condition to accomplish this, this is the best way to manage walking in large groups up steep inclines without experiencing the humiliation and discomfort of muscle failure. Another example is an airport. Atlanta’s Hartsfield International, for example, has nearly a mile of walking between the low and high end of the D gates. After a long flight or car ride, your legs will likely revolt when you try to hustle down one kilometer to Gate 28 with your 30-lb carry-on piece in tow. By being aware of this limitation, you can leave earlier, be in less of a rush, and when that is not option, call ahead to the gate in advance or have airport personnel do so for you, and let them know you’re on your way. (You’ve paid for a seat, you have rights!)

People with McArdle’s Disease deserve a break – literally.

If you have McArdle’s Disease, find a reason to take a break. If that means stopping at an ATM or shop window or tying a shoe which doesn’t need tying, then so be it…if it means feigning a “runner’s” calf camp or “old football injury”, then do it. Stop and take a break to get your energy back – by any means necessary. Learn routes from Point A to Point B that may allow you to take advantage of an escalator, or an elevator, or perhaps even a notoriously-long crosswalk where you can rest. You don’t need to stress about this; in fact, if you have McArdle’s Disease then chances are you are reading things you already know. Perhaps an individual with a friend or loved one suffering from the disease will read this page and be more attuned to that friend or loved one’s physical discomfort.

Again – be aware of your limitations, no matter where you are, and be aware of how those limitations will affect the outcome of the activities you participate in.