ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-414-831-6879.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
April 04, 2017

20 Years Since His ALS Diagnosis, Craig Remains Positive And Inspiring: One Man’s Story

"This month marks 20 years since I noticed a weakness in the index finger of my drawing hand and our Adventures With ALS began. This disease has taken my art, strength, voice, independence, dexterity, energy, & balance. No driving, drawing, strolling, video games, easy outings, non-e-books, singing along with the radio, sudden movement, or even idle conversation.

I don't tell you this to be pitiful, but to declare my happiness. Happiness doesn't rely on your circumstances always, but on your heart & mindset. Everyone gets down sometimes, but if you're not generally happy right now, change your thinking or you're unlikely to ever be. Enjoy whatever you have & love YOUR're probably more blessed than you've realized lately!"

The power of positive thinking should not be underestimated for anyone, but especially for those with ALS/MND. The benefits include, creating a buffer against depression, improved coping with stress, improved immunity, resilience, and overall health. Mayo Clinic has found that a sense of optimism increases life span, lowers rates of depression and distress, and produces improved coping skills in times of hardship and uncertainty. For all these reasons and more, developing an optimistic perspective for people with ALS, caregivers, family, friends and loved ones is important. Fortunately, there are ways a positive attitude can be developed.

Mayo Clinic suggests that maintaining a sense of humor, pursuing exercise, following a healthy diet and being surrounded by supportive people can promote a more positive attitude. Pursuing meaningful, enjoyable activities that provide satisfaction also help. Maintaining faith and connection, whether it is with a religious institution or a network of family and friends, can be a great source of mental healing which in turn can affect physical well being.

Mindfulness and relaxation can help identify the fine line that exists between a sense of hopefulness that research will provide answers and that life still offers opportunities within the reality that ALS/MND is a challenging disease. Yoga is a mind-body practice that combines stretching exercises, controlled breathing, and relaxation that reduces stress, lowers blood pressure, improves heart function and increases serotonin levels. Massage also reduces stress, pain and muscle tension. Support from a mental health professional is an excellent way to initiate a more positive life view.

A strong interpersonal network that prevents isolation from occurring can also deliver positive results. ALS patients sometimes feel the need to protect loved ones from the effects of the disease or feel too embarrassed by their disability to be in public. Those who continue to do the things they enjoyed before their diagnosis live longer, healthier lives. A core network can be made up of family, friends or an organized community willing and able to provide support.

Further, there can be a very positive “placebo effect” from the many opportunities that already exist in our lives, bringing mind, body and spirit together in a constructive manner. Live life as fully as possible. Invite friends over for the evening. Take the trip you planned. Go out to dinner, see a movie, get tickets to the theater. Participate in family events. Take a 1-2 day vacation at a local hotel. Ask your friends and family to help make these events happen. Not only will you feel an improved sense of wellbeing and quality of life, but those around you will benefit as well.