10 Tips for New ALS Patients

by Will Hubben on Mon, 2004-03-01 07:00

I was diagnosed with ALS in July 1998. Looking back at almost six years of living with ALS, I can identify a number of coping mechanisms that have helped me immeasurably, as well as a few that would have helped if only I’d followed the advice of the good people at my ALS clinic.

David Jayne
Will Hubben

1. Be compassionate to yourself.

If you’re like me, your first reaction to being told you may have ALS was shock and fear. We all go through wild emotional swings when we hear such dreadful news.

Allow yourself to feel denial, grief, anger and whatever else you feel without criticizing yourself for it. It’s natural, and necessary, for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses.

This too will pass. Being gentle with yourself is a big help.

2. Reach out to family and friends.

Many people will want to help, but not know how. Talking openly to a family member or friend about what’s going on for you will help both of you cope.

Ask for help with preparing meals, running errands, taking you to the movies or doing household chores. Building your support network will help you and your primary caregiver, and it lets family and friends get involved.

3. Learn about ALS.

Knowledge is power. ALS tends to make people feel powerless. Learning all you can about the disease, about supplements and drugs that might slow progression, and about current research, can help empower you.

Sharing what you learn will help raise awareness about ALS and the need for more research money.

4. Do everything you can for your health.

Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally.

5. Take charge of your treatment.

Pick your health care providers carefully. Remember: They work for you.

Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If a health-care professional doesn’t patiently and respectfully answer (or research) all your questions, fire that person and find someone else.

Don’t be passive about your treatment options. You’re always in charge.

6. Develop a relationship with a major ALS center.

MDA’s 30 ALS centers across the country, as well as its 230 hospital-affiliated clinics, have lots of experience with ALS. They generally take a multidisciplinary approach with ALS patients, and can be helpful at every stage of the disease.

The experts at these centers are usually the first to know about potential treatments and upcoming clinical trials. Go to www.als-mda.org/clinics for a list of MDA/ALS centers.

7. Do some things you’ve always wanted to do.

Take that trip to Europe, spend more time with your family, jump out of an airplane, write your book, raft the Grand Canyon.... Whatever it is, go ahead and do it. In a few months you may not be able.

8. Find ways to help others.

One of the best ways you can help yourself is to help other people with ALS. Raise money for research, join advocacy efforts, volunteer for clinical trials, attend support groups and reach out to those who need emotional support.

Giving what you can enriches your life as well as the lives of others.

9. Practice hopeful, positive thinking.

Having a positive attitude in these trying circumstances really takes practice, but it’s worth it. Not only is your moment-to-moment experience improved, but most experts would agree you also improve your body’s resistance to disease processes.

Remaining ever-hopeful helps me to enjoy my life, in each moment, as much as a hopeful person not facing ALS. There’s a lot of promising research going on in many different areas of investigation. Remember: Help is on the way.

10. Stay ahead of the curve.

Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a BiPAP at night as soon as possible.

By taking these and other steps early, you remain in control. No one with ALS regrets doing these things early; many regret waiting too long.

Will Hubben, 49, of El Cerrito, Calif., is an artist and marketing professional who's followed his own 10 tips since 1998. In 2000, he started the ALS Research Digest, which delivers the latest ALS research and scientific news and abstracts to thousands of people with ALS, researchers and clinicians weekly. He also contributes regularly to the e-mail newsletter ALS Digest. Back issues are at www.alslinks.com/alsdigestarchives.htm.

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