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Support Plays Important Role in Living with ALS

by | Dec 22, 2017

By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

Being terminally ill is its own full-time job. I always have a list of “ALS questions” to call and ask my doctors. The ALS multidisciplinary clinic is a one-stop-shop where I can get a lot of questions answered at once. I see physicians in multiple disciplines – neurologists, physical and occupational therapists, social workers, respiratory therapists, and more. It saves so much time and mental energy to be able to see so many physicians in one visit. It’s really terrific.

While I get many questions answered when I attend the multidisciplinary clinic, my appointments are scheduled every three months, so the monthly support groups help fill in gaps between clinic where I can ask questions to other people who are also experiencing ALS. Support groups have been one of the most valuable resources for me and others facing ALS. Because ALS is rare and very different from person to person, bringing together a group of people who are all experiencing this complicated disease together is invaluable.

Ben and his wife Alison both find the network of patients and caregivers at support groups beneficial in their ALS journey.

Having the support group has been good, not only for me, but also for my wife Alison. She’s met other caregivers who are hands-on with ALS every day. The advice she gets from them is often more practical and helpful than what she’s learned from a physical or occupational therapist.

I used to really enjoy cooking and was a professional chef for some time, but I can’t cook anymore. I still love to grocery shop. I think the best medicine for ALS is just to get out. I try to get out every day, because if I don’t, I don’t have the same spring my step, so to speak. I try to live in the moment, but I still have regrets.

Being connected with the ALS Association of Texas has huge benefits for people with ALS. The Association is an invaluable resource for information. Because it’s a disease that affects people in many varied ways, people don’t understand it like the staff at the ALS Association. I also feel like I’m part of a nationwide network of people facing ALS. They are who I will be involved with from now on. This is just a glimpse of the incredible impact your generosity can make on the lives of people facing ALS.

Your support makes a real impact on the lives of Texans living with ALS like Ben. Donate today.

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How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: