You are not alone: Words of wisdom from the ALS community

It's easy to feel isolated when dealing with a chronic disease like ALS, but help and support is available. For those who may need a little extra guidance or reassurance, we’ve compiled a variety of tips and advice from our ALS community that you may find useful.

You are not alone: Words of wisdom from the ALS community

Compiled by BioNews Staff, June 1, 2023

hands reaching out

Navigating life with amyotrophic lateral sclerosis (ALS), whether you are someone with ALS or a caregiver for a person with the disease, can be challenging, but it’s important to realize that you are not alone, and there is help and support available to those who need it. We’ve compiled a variety of tips and advice from our ALS community that we hope are helpful for those who may need a little guidance or reassurance.

Do as much as you can as long as you can. If you like to travel, do it until it is no longer possible or enjoyable. If you like music, attend as many concerts as you like. Don’t worry about the little things. Keep your connections open with your friends and family — life is too short for those disagreements or arguments that are really meaningless. Your friends and your family are your lifeline.

— JT Taylor, from the ALS News Today forums

I would strongly advise finding a palliative care doctor in addition to going to an ALS clinic. We found one for my husband through a recommendation from our ALS clinic. She has been fantastic and she is local, while the clinic is an hour away. She has made a big difference. Don’t wait to find one.

— Lorraine Larkin, from the ALS News Today forums

Don’t exercise strenuously, archive your voice while it still sounds somewhat normal or use a recorded presentation/conversation for the data set as I did. Be efficient in your movements; think ahead before moving so there are no wasted efforts. Get creative using your fingers for tasks — use them in nonconventional ways along with tools.

— Reese, from the ALS News Today forums

If it is your spouse that is suffering through ALS, spend as much time as possible with them; the end is nearer than you think.

— Lanny Kohnhurst, from the ALS News Today forums

My best tip is to learn to ask for and accept help. ALS seems to strike brave, independent, and strong people who may not be accustomed to taking help. That was sure the case in our family when my late husband, Jeff, was diagnosed in 2018. Learning to accept help with grace was a steep learning curve for us, but it brought us greater support while living with his ALS. A related thought is that help can come in many faces and forms — recognize that you’ll meet new friends and fellow ALS warriors who want to ease your journey. For introverts like Jeff and me, that could be tough, but it was so very rewarding.

— Juliet Taylor, ALS News Today columnist

When at ALS clinic appointments, always listen, and bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions, such as, “What do you suggest I do to maintain where I am at right now?” and write down everything so you can follow up at home.

— Dagmar Munn, ALS News Today columnist and forums moderator

Get equipment before you desperately need it and are scrambling. So many times, people suffer a bad fall before they start using a wheelchair. Or they don’t want to go on breathing support but once they do, they sleep much better at night.

— Kristin Neva, ALS News Today columnist

Focus on what you have and still can do, and not what you’ve lost. Don’t wait to check things off your bucket list, make the most of each day ! This helps me keep a positive attitude! I volunteer for medical research and that helps me feel like I’m contributing. Always bring someone to your appointments to listen to the doctors. That helps keep track of suggestions and sometimes they ask questions you don’t think of.

— Amanda Sifford, ALS News Today columnist

Keep doing the things you love for as long as it’s safe. Keep your family and friends up to date on your journey. Reach out to others with ALS for support and advice. Our local society hosts two zoom calls each month and I’ve learned so much and have made good friends through them too. Have your home evaluated by an occupational therapist to find out what you’ll need as the disease progresses and get the equipment and changes in place before it becomes an emergency situation. Falls can progress the symptoms, so do whatever you need to do to prevent them. Be kind to yourself.

— Mary Jo Fairweather, from the ALS New Today forums

Don’t wait to get a piece of equipment until you need it because the approval and acquisition process always, always takes longer than expected. And be diligent about checking on its status. Almost every piece of equipment, from wheelchair to Tobii device to seat cushions, has gotten hung up in the process and would have remained stalled if I had not followed up.

— Dustin Kassman, from the ALS News Today forums

An ALS clinic visit tip I do: I visit every six months. I have a list of the team’s emails, and I write a group email to the whole team. I tell them what has been happening since my last visit with me, my family, and then I write to each department. … I start writing it about two weeks before my appointment, then send one email to all the team members [before my appointment. … It saves me from repeating myself 10-plus times during my appointment, and my neuro and the team appreciate it because everyone knows what’s going on with me at the same time!

— Beth Rookey, from the ALS News Today forums

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.