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10 Tips for Living With ALS

A family shares its experiences — and advice

George Kaminski and Wife Judy

Two years ago, George Kaminski felt especially tired after an ordinary trip to the gym.

"I could barely walk. I was wiped out," he says. "I thought I just was out of shape and not working out often enough."

Back at the gym two days later, Kaminski could barely walk around the track. "I felt I had no core strength, and I needed to hold on to a handrail to keep myself steady," he says.

After nine months of visits to specialists and a series of inconclusive medical tests, George arrived at the office of Rabia Malik, MD, a neurologist at Rush University Medical Center. She ordered an MRI of his brain and electromyography, or EMG, to evaluate the electrical activity of his muscles.

The diagnosis: amyotrophic lateral sclerosis, or ALS.

Accepting the new reality

For George, his wife, Judy, and their grown children, the news was devastating.

"At the initial diagnosis, we talk with patients and their families about the course of the disease and what to expect. We are up-front and honest," Malik says. "Knowing the truth allows the patients and their families to accept this new reality and gives them a chance to make the best of their time together."

Better known as Lou Gehrig's disease — and the disease afflicting Stephen Hawking — ALS slowly kills off motor neurons in the brain and spinal cord.

When the motor neurons die, the brain loses the ability to initiate and control muscle movement, leading to muscle wasting and eventually affecting the ability to speak, eat, move and breathe. Patients can remain high functioning for a year or two, though the prognosis is typically three to five years.

"It's a challenging disease. And as of now, there unfortunately is no cure," says Malik, who is part of Rush's multidisciplinary ALS Clinic, which helps to manage this rare and complex disease and provides team support for patients and their families.

'As normal a life as possible'

George, 70 years old and retired from his career as an underwriter/insurance salesman, uses a wheelchair and needs help feeding himself. But the Kaminskis are committed to making their time together meaningful.

"We try to have as normal a life as possible. We still do just about anything we've always liked to do. The difference is, anything we do we have to plan for," Judy says. "We have to allow extra time."

Here, George and Judy offer their tips for other families facing ALS:

1. Stay social.

Just as they always have, the Kaminskis often go out to lunch or dinner visit with friends. They say staying connected is key to remaining positive making the best of each day.

"We've found certain restaurants with ramps that are more accommodating for wheelchairs, and we go at times that are not as crowded," she adds. The Kaminskis also invite friends over to watch sports or movies together. And many museums are wheelchair accessible.

2. Have a 'go bag.' 

Judy created a "go bag" for George packed with tissues, hand wipes, a bib, a portable urinal and big-handled silverware that's ready to go at a moment's notice. "And I have his wallet in there — he still has to pay for dinner," she adds with a smile.

3. Get a handicapped sticker for your car.

Check with your state's Department of Motor Vehicles to check the requirements for a disability placard for your car. "This can make it easier for you to go out, knowing you don't have far to get inside," George says.

If your resources allow, consider purchasing a handicap-accessible van.

4. Anticipate needs — as best you can.

ALS progresses differently in each person. "George goes to bed at night, and by morning he's lost ability to do something he could do the day before. You can't anticipate everything. So start shopping for a walker, getting fitted for a wheelchair and arranging for other assistance sooner than later, before it becomes a crisis," Judy says.

For instance, ordering a wheelchair and getting Medicare approval can take time, so don't wait until you or your partner can't walk at all to submit the paperwork.

5. Go to physical and occupational therapy.

After his diagnosis, George started going for therapy at a nearby hospital to help maintain his strength and flexibility. 

"I did exercises to help keep my spine vertical and strong, and did laps with my walker around our living room and dining room," he says. He credits the exercises with allowing him to use his walker for as long as possible.

George goes to bed at night, and by morning he's lost ability to do something he could do the day before. You can't anticipate everything. So start shopping for a walker, getting fitted for a wheelchair and arranging for other assistance ... before it becomes a crisis.

6. Find caregiver relief.

Caregivers need time for themselves. "Judy has a life," George says. "I don't think she could take care of me completely on her own."

The Kaminskis' friends help out. "George's cousin who is his best friend comes over every Friday. They do guy things, like go to the barber or go look at cars at a dealership," Judy says. They also recently employed a caregiver to come each day at wake up and bed times, plus two afternoons a week.

If you can't afford to hire a caregiver, see if neighbors or members of your faith community can pitch in; often, others are more than happy to cook meals, clean, do yard work, shop for food or even just stop by for visits.

There may also be free community resources available to you; talk your doctor or one of the hospital's social workers.

7. Adjust your home.

The Kaminskis moved the bedroom onto their first floor of their home because George can no longer use the stairs. They also raised toilet seat on the first floor bathroom to make transferring from the wheelchair easier for George, who is 6'1".

If you have the financial resources, consider widening doorways and adjusting shower stalls to accommodate a wheelchair.

8. Be persistent but patient when dealing with insurance companies.

"Everything moves very slowly," Judy says. "You might need to nag people to get what you need, and that might not be who you are. But it is what you might need to do."

9. Consider therapy and antidepressants.

ALS can take its toll on the patient and their caregivers, and both are at significant risk for depression.

"There is no cure for this disease, though there is ongoing research," Malik says. "It is hard to keep the patients' spirits up. And the demands on the caregiver are very high and ongoing." Talking to a therapist, someone who is objective and can help you work through your feelings, can help.

10. Live in the moment.

George admits he worries at times about which ability is going to go away next. "But I need to stay focused on what I can do right now," he says. "I try not to think about what is going to happen next."

Judy agrees. "We can't think about what's going to be. We can't look at the end game. We'll take it as it comes, one day at a time."

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