To take advantage of MDA’s programs and services, you first need to have received a diagnosis of one of the more than 40 neuromuscular diseases in MDA’s program. Those diseases are listed at www.mda.org/disease/.

Home base for your journey is your local (or district) MDA office. Think of the Health Care Service Coordinator (HCSC) there as your tour guide, who’ll show you the high points and unexpected turns along the way.

With a covered diagnosis, you can register with MDA to receive services and up-to-date information on MDA activities such as neuromuscular disease research. Your HCSC opens a file for you with all pertinent information (name, birthdate, diagnosis, etc.). All information you provide is kept strictly confidential.

(If you haven’t registered, or aren’t sure whether you’re registered, see “Signing Up.”) It tells you how to find your local MDA office and update your status.)

Once you’re registered, you start receiving your local newsletter, which includes information on MDA local events and services. On a national level, you get MDA’s bimonthly national magazine, Quest. If you have amyotrophic lateral sclerosis (ALS), you also receive the MDA/ALS Newsmagazine every month.

If you’re registered, but aren’t receiving Quest or the ALS Newsmagazine, or you’re moving to a different city, call your local office. The staff there is charged with keeping your “passport” information up-to-date to ensure you receive an uninterrupted flow of timely information from MDA.

Say you’re moving from San Diego to San Francisco. Before you leave San Diego, call your HCSC and report your new address. The HCSC will notify MDA’s San Francisco office of your expected arrival.

Upon arrival in San Francisco, call the local office to confirm your new permanent address and phone number. Your new HCSC will assure that you continue receiving MDA print materials and will coordinate any MDA services you may request. When you relocate to a new local address, notify your HCSC.

Through your MDA activities, you’ll meet other local people served by the Association, as well as their families. These people will be your traveling companions — offering their experience and company.

Your local MDA community gives you, your child or other family members a chance to share experiences, common concerns and advice with others affected by similar diseases through educational seminars and support groups.

MDA support groups provide a safe environment in which to share complex emotions and practical advice. Guest speakers are sometimes invited to provide their expertise on important subjects.

Some support groups focus on families affected by neuromuscular diseases; others on caregivers; and others on specific diseases such as amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy or Friedreich’s ataxia. There are some 290 MDA support groups nationwide; the number and types of local groups depend on how many people are served by MDA in each community.

Interested? Call your HCSC for the dates, times and locations of local group meetings. There’s no cost to you for attending a support group, and it’s a great place to make friends and learn how to make your life easier.

If your district doesn’t yet have the type of support group you need, contact your local HCSC to explore the possibility of getting one started, or to discuss other ways of connecting, such as Phone Friends or online chats.

First Stop: MDA Clinic

Through block grants, MDA maintains some 240 outpatient clinics, staffed by a top neuromuscular disease health team. The grant covers initial visits for the purpose of establishing a diagnosis, and follow-up visits for medical management of your disorder.

To set up a clinic appointment, call your HCSC. Usually your HCSC is present on clinic days to meet and greet you, answer questions and distribute MDA publications.

Your doctor may recommend an annual consultation with a physical therapist (PT), occupational therapist (OT), respiratory therapist (RT) or speech therapist (ST). These are covered by MDA.

Your clinic doctor may recommend that you see a specialist, such as a cardiologist, nutritionist or pulmonologist, or undergo tests, such as muscle biopsies, electrocardiograms (EKG), blood tests and X-rays. Be sure to ask whether these expenses are covered by the clinic grant or if you’re responsible for the costs. Get it in writing.

Your medical team can keep you informed about research and participation in clinical trials.

If your neuromuscular disease affects the muscles used in breathing, influenza and the respiratory infections that come with it can be extremely dangerous, even fatal. For this reason MDA offers no-cost flu shots to those registered with the Association.

Your clinic physician will know whether or not a flu shot is right for you and if there are any risks.

Traveling in Style

To keep you on the road, the Associa-tion will pay up to $500 per year (April 1 to March 31) for repairs or modifications to your wheelchair, scooter or leg braces, even if they weren’t acquired with MDA’s assistance.

Most repairs and modifications to wheelchairs such as tires, batteries, solid chair backs and anti-tippers are covered by the $500 repair allowance.

If something on your wheelchair breaks or your braces need adjusting, call your HCSC. He or she will tell you how much of your annual $500 repair allowance remains and contact the wheelchair vendor or orthotics company for an appointment.

Calling your HCSC first is important if you want MDA to cover the cost of the repair.

Remember that the $500 allowance applies toward both parts and labor. The funds can be used for any combination of repairs.

For example, if your wheelchair repair bill comes to $180, then you still have up to $320 for wheelchair and leg brace repairs and modifications for the rest of the year.

Second Leg of the Trip

Your MDA journey may involve a stop at the loan closet. MDA’s loan closets offer a wide range of DME equipment from walkers and power wheelchairs to van lifts and bath equipment. The loan closet offers used equipment in good condition that’s been outgrown or is no longer needed. Donations are always appreciated.

Every loan closet has different items, depending on the number and types of equipment donated. Check with your HCSC when you need a piece of equipment that isn’t covered by your insurance. You need a prescription from your MDA clinic physician in order to borrow something, but you can keep it as long as you like at no charge. You’re asked to return the item when you’ve stopped using it.

Your HCSC will make arrangements with an appropriate vendor, who’ll make sure the device is in good operating condition and meets your needs. If the item is too difficult for your family to transport, MDA will arrange to have it delivered to your home.

Fun in the Summer Sun

If you’re between the ages of 6 and 21 and traveling with MDA, you’re invited for one week of MDA summer camp. You’ll form lifelong friendships with others who have similar challenges and enjoy horseback riding, swimming, fishing, arts and crafts, and playing accessible sports like power soccer and bowling. Your counselor, who’s also your caregiver for the week, will assist you 24 hours a day.

If you’re in the appropriate age group, your local office will send you a letter or postcard regarding MDA summer camp months in advance. The postcard tells you the summer camp dates, locations and how to apply. Call your local office and staff will send you an application package.

After you fill out the application, your clinic physician needs to give you a physical to make sure summer camp is a good idea for you.


Improving the Journey

Joining the 2 million MDA volunteers is a fun way to meet people and help the Association help you, your family or friends. You have so many options as a volunteer, from mentoring new families to answering phones at your local Jerry Lewis Labor Day Telethon broadcast.

You can also participate in popular MDA fund-raisers like Lock-Ups, Shamrocks Against Dystrophy, Hop-a-Thons, and bowling and golf events. You can get involved when a local sponsoring company or organization is putting an event together. MDA may need you to visit with local sponsors to show your thanks, or talk to reporters about MDA’s programs.

Want to volunteer? Call your local office or watch for opportunities announced in your local newsletter.

One of MDA’s goals is to educate the public about the capabilities of people with neuromuscular diseases. To do this, MDA provides ways in which you can be recognized in your community.

You may find yourself or your child nominated for an MDA Personal Achievement Award or Goodwill Ambassadorship. You may be asked to serve on a local MDA Task Force on Public Awareness or wish to contribute something to the MDA Art Collection.

Your HCSC may ask you to give an interview to a local newspaper or TV station, make a speech before a civic group, appear on your local Telethon broadcast, or be interviewed for an article in Quest.

All of these contributions will help others who are making the MDA journey.

Buh-Bye

What about services not covered by MDA? Your HCSC can also be a resource for finding other means of financial assistance. He or she can tell you where to get more information on topics such as independent living.

I hope you’ve enjoyed your journey through MDA services. Please keep your seatbelts fastened until the tram has come to a complete stop.