Leigh Ann Nielson, left.

Leigh Ann Nielson passed away from ALS on January 12, 2025, after living with the disease for more than five years. Before her passing, she compiled a list of information for people with ALS and their caregivers, sharing what she had learned over half a decade with ALS. The ALS Therapy Development Institute (ALS TDI) is proud to share this piece so that others can learn from her experiences.

My name is Leigh Ann Nielson and I was diagnosed with ALS/Lou Gehrig’s Disease on November 27, 2019. It has been quite a journey. I am not a Doctor nor do I advocate for not following your Doctor’s advice. With that being said, however, you have choices. Be sure your medical team gives you ALL of the options, whether they recommend them or not. You can choose a different solution than what your Doctor suggests. You know what is best for what you want from your life. Below are some recommendations and ideas based upon my experiences to date. They may help you or they may not. Except for big ticket items like the electric wheelchair, I purchase most of my equipment on Amazon. They are good quality, much less expensive than a medical supply store, and you can get them delivered quickly. If there is an issue, they are easy to return. I hope my experiences are helpful for you.

  1. Find a Multi-Disciplinary Clinic specific to your disease/issues- No, they can’t cure ALS. What they can do is track your progress and help you to stay ahead of and deal with your symptoms. Clinics are awesome!! We would go to my Clinic at 9am and get assigned a room. Then we stay in that room while everyone comes to see us. We’d see a Social Worker, Palliative Care Nurse, Dietician, Speech Therapist, Occupational Therapist, Physical Therapist, my Neurologist, Pulmonologist, Respiratory Therapist, and my local Support Group leader. Can you imagine having to make all those appointments yourself? Or having to go to each one separately- in and out of your vehicle, in and out of the building, in and out of their offices. It would be a nightmare and exhausting.
  1. Find a Support Group- You can find them online or through your ALS Clinic. My group meets once a month over Zoom. It is nice to be able to talk with people who understand what you’re going through. You can get ideas from them, give them your ideas and talk about things that other people (including your Doctor at times) don’t understand. I was extremely excited to get my catheter and about the positive impact it had on my energy level and quality of life. My friends thought I was weird. My support group understood. Your support group can also help you with resources for equipment or services- as can the Social Worker at your multi-disciplinary clinic.
  1. Energy levels- Especially with ALS, you need to be aware of your energy levels. Prioritize your activities everyday. You may not get everything done. Oh, well. Take your time and try to find ways to make things easier for yourself. With ALS, the nerves that tell your muscles what to do, die. As time goes on, you have fewer and fewer muscles trying to do the same amount of work. That means it is more and more effort/work to do the same things. You can’t work or exercise through this. You can weaken your muscles faster by overworking them because they don’t recover or improve like healthy muscles will. Your muscle weakness is a progressive, permanent, physical change. You should work with your body and accept your limitations. Make sure you give yourself adequate rest periods between your activities or during activities. The amount of activity you can do before you need to rest and the amount of rest you need will change as your ALS progresses. You have to be honest with yourself about what you can really do without getting tired. If you get tired, you are much more likely to fall and injure yourself. If you get exhausted, you have done way too much! I take a shower first thing each morning. I then plan to rest before I do anything else. If I wash my hair when I shower, it can take up to 2 hours. I can take an hour just to get dressed. I put on my socks, underpants, and pants and then have to rest. Sometimes I can’t do that much before I have to rest. My husband (my caregiver) washes my hair for me. It still takes at least half an hour to actually shower and wash my hair. Don’t be a hero. Make it a point to consciously monitor your energy levels at all times and don’t let yourself get tired. It will greatly improve your quality of life and decrease your chance of falling/injury.
  1. Caregivers- Currently my husband is my only caregiver. There is a LOT of information out there about caregivers. The most important, it seems to me, is to be sure your family and friend caregivers are taking care of themselves. They can’t take good care of you emotionally and physically if they aren’t in good shape emotionally and physically. My husband still goes fishing for a day. If he wants to go do something, there are things we do so I am safe and he doesn’t worry so much. I always have my phone charged and with me. I keep it in a pocket attached to the arm of my wheelchair where I can easily reach it. I can call him or friends or 9-1-1 if needed. I have an Apple watch. It is synched to my phone and is always with me. We call and/or text periodically when he’s gone. I try to schedule visitors on days when he will be gone. It gives me something to do and makes him feel better knowing that someone is physically there. We arrange things so I don’t need to leave my chair and take a chance on falling. A fall can start a downward health spiral that you may not ever recover from. We have little enough time as it is. I have a catheter so I don’t have to use the toilet. We put snacks/meals on the counter or on the bottom shelf of the fridge, where I can reach them from the chair. I’m safe in my chair so I don’t want to have to leave it any more than necessary- especially when I’m alone. Plan ahead.
  1. Socks and swollen feet or cold feet- As I was less able to walk, my feet started to swell and also to be cold. My regular socks didn’t stretch enough and were tight and painful by the end of the day. Compression socks just didn’t work/help. They were even more painful than my regular socks and they were impossible for me to put on and take off without help. I found that diabetic socks worked well for me. They were soft and extra stretchy and I can put them on and take them off myself. Very comfortable!
  1. Water retention- I was prescribed a diuretic for my swollen feet. Unfortunately, the diuretic gave me severe mouth sores and I had to stop taking it because I was barely able to eat or drink due to the pain from the sores. I lost 30 pounds before we got the sores under control. Instead of trying a different diuretic, I started drinking green tea. It is very high in caffeine so it worked as a diuretic for me. Obviously, if you don’t tolerate caffeine well, this is not a good option for you.
  1. Walker- I started using a walker before it was a necessity because my balance was getting precarious, and the walker helped create a space around me. People were much more careful around me and didn’t jostle or bump into me, which would have caused me to fall due to my balance issues. Again, we need to avoid injuries. I recommend you get 4 wheels that are at least 8 inches. The bigger wheels are easier to maneuver, and they don’t get stuck on small rocks or ledges or in cracks in the sidewalk. I also suggest getting a large seat. If you get tired, you can sit on it. It also works well to move things around. You can place things on the seat and use the walker to move it to where you want. That way you don’t have to carry things around which can be tiring and you could lose your balance with your hands full.
  1. Shower chair- Don’t waste your time or money on a shower bench. You will need a shower chair. A bench doesn’t have a back to lean on when you get tired, the seat can be slippery, and you have no leverage to push yourself up when you finish your shower. Get a good shower chair. Be sure it has a back, a no-skid pad on the seat, armrests, rubber feet, and a cutout. The cutout allows you to clean your private area without having to stand. The bigger, the better on the cutout. Most bedside commodes can double as a shower bench. There are 2 problems with this. The first is that most commodes are heavy, which makes it difficult to move in and out of the shower. The second issue is that after you shower, the commode is dripping wet and has to be dried off to use as a commode again which creates more work for you and/or your caregiver. I highly recommend a separate shower chair and bedside commode.
  1. Swallowing and eating hints- If you are having difficulty, the first thing to try is taking smaller bites and slowing down. Chew slowly and swallow deliberately. They make a thickener you can add to liquids to help you keep from choking, too. If you find things are just sliding down your throat and causing you to choke, try tipping your chin down towards your chest as you chew and swallow. This uses gravity to help keep food in your mouth until you’re ready to swallow. It also makes the food more likely to go into your stomach as that position crimps your airway and makes your airway smaller. Along those same lines, try using a straw to drink liquids. It forces your chin down. Straws can also help you to drink without having to lift a heavy glass. If any of these work for you, they aren’t a permanent fix. You will need to discuss options (typically a feeding tube) with your Doctor. You have several options for adaptive silverware. One option is an enlarged, rubber handle to help you grip your silverware. Another option is longer handles. I use the longer handles. I eat in my wheelchair and hold my plate or bowl on my chest with one hand. I set my elbow on my other hand/arm on my armrest. The longer handles allow me to eat by only needing to move my wrist and fingers. Much less work/effort for me and I don’t spill as much. Saves energy as well.
  1. Shower heads- I highly recommend the Moen Engage Magnetix Handheld Shower Head. The shower head attaches to the base with a magnet, which is much easier than trying to thread the handle through a holder. If you get close, the magnet grabs the head. You can also purchase an additional magnetic dock/base and put it down lower on the shower wall so you can reach your shower head from your chair. That way you don’t have to stand up and reach over your head (an issue as your balance gets worse) to get the shower head or put it back. They install easily like any other shower head and are reasonably priced. We found them at Lowe’s and Amazon.
  1. Wheelchair- Get your electric chair as soon as you qualify. I believe Medicare pays 80% for one mobility device (scooter, electric wheelchair, etc.) every 5 years so be thoughtful in what you purchase and when. I’d hate for you to buy an electric scooter (around $1000) with Medicare approval and then find you are progressing quicker than you thought and you need an electric wheelchair ($35,000 with your Medicare discount). It takes several months to get your wheelchair built so sooner is better. My chair came with headlights, which seemed silly. I love my headlights! Once it gets dark, I can use the headlights and not worry about running into something in the dark or finding the light switch and reaching it. Once you get your chair, start using it ASAP. You need to get used to driving it around your house. The chair weighs 200-250 pounds. If you aren’t careful, you can easily break furniture and put holes in your walls and doors or hurt someone. They are big. I have certain areas where I turn around because of the room required. Practice makes perfect. Also, the more you use your chair, the more energy you save to use for other things. I put 2 hair ties around one arm of the chair and use it to hold a heavy duty back scratcher. This comes in handy for pulling things closer so I can reach them. I also got a bag that hangs off the arm that holds my cell phone. Once you get your chair, find the non-emergency number for your local 9-1-1. I got mine from the police department. Call them and have them note that there is a disabled person at your address. That way if there is a fire or other emergency, they know you are there and will need extra help. Also, keep their non-emergency number handy. If you need help getting up, you can call them (be sure to specify that it is NOT an emergency) and they will come over and help you. 
  1. Catheter- Once you start having difficulty getting on or to the toilet, I recommend a catheter. They are a total game-changer. I only wish I’d known because I would have gotten mine much earlier than I did. They are not painful. Again, they save your energy for other things. I had a Foley catheter, and it gets replaced every 30 days. Takes about 5 minutes. Be sure they give you a patch with a swivel (catheter stabilization patch). It adheres to your inner thigh and clamps on the hose. It keeps you from pulling the hose out and keeps the hose from getting tangled. I also recommend using the night bag all the time. The day bag is smaller but that just means you must empty it more often. You can purchase a cover for your bag (and the tubing) on Amazon for about $25. Mine is blue camo. That way people don’t have to look at it at home or if you are out. Believe it or not, you want to drink lots of water so that your catheter works well and doesn’t leak or get plugged with sediment. Many things can cause some leakage: laughing hard, coughing hard, sneezing, being constipated, etc. You will very likely have to take an anti-spasmodic. Your bladder knows your catheter isn’t part of your bladder so it wants to push your catheter out and it contracts trying to do this which causes leaking. My contractions just felt like I had to pee really bad- no pain. I would plan on using pads at least the first month until you are sure you have everything under control. My spasms/contractions didn’t start until 2 weeks after I got my catheter. I can’t really speak to men, but for women I recommend Always Discreet incontinence pads. Their shape helps keep leakage from overflowing the pad until it’s absorbed and it creates a channel for the tube to sit in comfortably (with a Foley catheter). I recommend keeping your pubic hair short. It will make it easier to keep your privates clean and keep it from smelling if you have leakage. I love having a catheter!
  1. Bedsores and skin issues- You MUST stay on top of this!! If you start to get any kind of skin issue and you can’t get it under control quickly, contact your Doctor or nurse immediately. Do not wait. You need to be very vigilant so you don’t get bedsores, which can be extremely painful and even life-threatening if they get infected. This especially comes into play when you start spending a lot of time sitting. Keep an eye out for sore spots or red spots on your skin. This can be the start of a bedsore. I use a good moisturizer when I get sore spots or red spots and try to keep pressure off them. Carefully massage the moisturizer into your skin. Don’t massage so hard that you damage your skin. If you tilt your wheelchair back, it will take a lot of pressure off your bottom and legs. I have had an issue sometimes with my catheter tubing sticking to my skin and causing red marks. I use A&D+E ointment. It doesn’t absorb but creates a barrier between my skin and the tubing to keep it from rubbing. It also moisturizes my skin. Another place to keep an eye on is the bridge of your nose. Your BiPap or ventilator mask can affect your skin, too. I use the A&D+E ointment here, too. It not only creates a barrier to the mask rubbing my skin, but it also helps the mask seal. Every morning be sure to check yourself out (you will need help) to look for red spots. When you shower, be sure to clean anywhere your skin folds (anywhere skin meets skin on a regular basis). Equally important, you need to be sure any skin folds get completely dry. If they don’t, you can get irritation or a fungus. It will become painful, itchy, and smell. I don’t want people to remember me as smelly or, worse yet, not to come over because of the smell. I have 3 small grandchildren and it would break my heart if they were uncomfortable around me because of the smell. As you become less mobile and spend more time sitting or lying, you need to shift position regularly. Most recommend every 2 hours. This can be as simple as adjusting your electric wheelchair or a caregiver rolling you and using pillow to prop you up. You want to change your pressure points.
  1. Raised toilet seat- You want one fairly quickly. You will be amazed how much easier it is to get up from the toilet with these. I had ADA toilets and I still needed the height from the riser. You want the raised toilet seat that has arm rests and rests on the floor with 4 legs. You don’t want the seat that just attaches to your toilet seat. They can be very unstable as you use them to get on and off the toilet. Safety first.
  1. Bedside commode- Be sure it has armrests, a padded seat, and a padded back. It should be fairly heavy so you don’t tip over as you get on and off the commode. I use commode liners. I use my catheter for urine so I just use my commode for bowel movements. Much easier to clean with liners. This means I only have to use it sporadically and not constantly. Less climbing off and on your chair. It’s all about safety and saving energy.
  1. BiPap and/or Ventilator- If you start waking up with a headache or have difficulty breathing you will probably start using a BiPap machine. As your breathing becomes more labored, you will progress to a ventilator. The ventilator can be non-invasive or you can opt for a tracheotomy. The non-invasive ventilator is basically a BiPap on steroids. They have parts that need to be cleaned or replaced at regular intervals as does your BiPap. Not a big deal. You need to use distilled water in your BiPap or ventilator. Most ventilators have a battery backup. Once you start using a ventilator be sure to contact your power company to let them know you require power for your life-saving, medical equipment. They may require a letter from your Doctor. They should make a note on your account and contact you in the event of a planned outage. In the event of an unplanned outage, you will have priority for getting power restored. Depending on your circumstances, you may want to invest in a generator. At least enough power to run your ventilator.
  1. POLST (Physician’s Orders for Life Sustaining Treatment)- Be sure you go over this with your family and caregivers and place it where it is easily accessible. I recommend putting it on your refrigerator as I was told that is where emergency personnel have been told to check. Another good idea is to have an additional one on your bedroom door and also have your spouse/significant other/partner keep a copy with them. In any case, be sure your caregivers know where it is so they can give it to emergency personnel. I also recommend you complete a new one every couple of years so everyone knows your wishes are current. If the Ambulance/EMT’s come or you have to go to the hospital, be sure to show any emergency personnel and your medical provider this document. Check with your Doctor as these may already be part of your on-line records. 
  1. Trach tube- This is something you need to discuss with your family and your Doctor. If you choose to get one, you will most likely live longer. However, the tube makes speaking very difficult, if not impossible. The tube requires 24/7 vigilance and care as they can easily get plugged and someone needs to be there to check it and to clear it. In other words, you will most likely need a full-time caregiver, which is extremely expensive. Things to consider.
  1. Voice Banking- If you are planning on voice banking, do it as soon as possible. However, some of them just don’t sound that great. I spent a lot of time creating my voice bank, but I thought the voice sounded like every other computer-generated voice. Purely by luck I discovered TD Talk, which is an app SOLELY for iPads. You must be able to type on your iPad to use app. The app is free and was created by Tobii Dynavox. It is very simple to use. It has over 100 different voices you can use. You just type in what you want to say, and it will speak it. You can also create phrases, so you just need to click on the phrase and it says it.
  1. Some books I found helpful-
    1. Dancing with Angels by Barbara Farr. A good book for patients and families. Stories about Hospice and some of the wonderful people who work for them and how they can make your passing a special event. Gives you a good idea of what hospice can and can’t do for you and your family. I found the stories very uplifting.
    2. The Art of Dying Well by Katy Butler. A great book for family and caregivers, in addition to the patient. I found this book to be dry reading but it has a lot of information about our medical system and how to navigate it. It gives ideas on how to get clear information to help you decide if there is a real need/reason for tests or treatments that may be recommended. It gives you good information on your right to accept or decline treatment. It also has lots of information about caregivers and things to look for and look out for.
    3. Hospice Whispers by Carla Cheatham. Carla Cheatham is a hospice chaplain. She gives lots of examples of how she connected with people with various illnesses and talked a lot about her role as chaplain. Very interesting and some good stories.
    4. The Invisible String by Patrice Karst. A great book for small children who will be exposed to the death of someone they know/love. I have 3 small grandchildren. I have been asked if I was telling them that I would be watching over them after I died. I think that would be very confusing for kids who really don’t understand death yet. Plus, the house they live in has weird things happen. Objects can move around, etc.. I don’t want to scare them and have them equate me with that kind of activity. The book says that everyone you love is attached to you by an invisible string whether you are with them or not. I like that idea. Besides, you can read it to them before your death so they can ask you questions if they want. It has been my experience that kids will change the subject when they are no longer able to process any more information. The younger the kid, the less they can process at any given time. Don’t overload them but do be honest.