I just spoke to Tim Gleason. They are an amazing organization. The woman I spoke to was so sweet and so helpful. She even convinced me that maybe I can go scuba diving once again.

I just came from the north having celebrated my birthday U in New York. It was beautiful seeing the autumn leaves once again that I haven’t seen in many years since I live in Miami. But having been up there I realize it’s much harder having an ALS in colder temperatures. Putting on long socks Long pants shirts A long sleeve shirts… Read more

I don’t have a great way of tracking them, I’m so disheveled and A.D.D. I’ll use a post it notes app on my laptop, or the notes feature on email, or an actual email. I’ve used the websites Google Keep, and Evernote. The only way I sleep at night, is knowing that I update my symptoms and conditions on my Patients Live Me profile. Would love…

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Tracking ALS symptoms can feel overwhelming, especially when they change from day to day. But having a record — even a simple one — can make medical appointments easier and help you advocate for yourself.

The tracking doesn’t have to be perfect. Sometimes it’s a few notes in your phone. Sometimes it’s voice memos or a list with paper and…

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Even though I try to maintain some “normalcy” in what I do (brushing my teeth, getting dressed, eating, etc.), the BIG change over time has been how long they take. What used to a simple few minutes to put on my shoes now takes 10-15, getting fully dressed is a half-hour. Time is something I don’t want to waste or use up needlessly.

I got mine from Team Gleason foundation. Long term loan.

Bravo Rosemary! Instead of giving up and being in a mental funk — you brainstormed an alternative way. It’s always interesting how our brains automatically fall back on “there’s only one way” thinking. ………when you can’t go over the mountain, go around it.

Ditto here on dressing as well! But more concerning for me, was after having several falls, I was told I should not be using my walker to get around. This created an even bigger problem of not being able to showering. My tub transfer bench could not fit through the glass enclosure door opening – yikes! What to do now??? Took a few days…

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I used to be able to get dressed while standing — even balancing on one foot, then the other- to put on pants and socks. Now, I get dressed while sitting on a chair.

Life with ALS can drastically change the way you get dressed, cook, write, drive, shower, and open containers. Although the change doesn’t happen overnight, over time, some people with ALS find they have to change how they tackle certain tasks. 

What’s one everyday task you’ve had to learn to do differently?

Look at Klano 40 wheelchair. Traveled in Asia with it. Only about 38lbs.

I’ve seen people using EZ Lite Cruiser — https://www.ezlitecruiser.com/

They are narrow, lightweight, and foldable.

I got mine from the Gleason foundation. It has been a very very big help. Your should contact them.

I am looking at purchasing a power wheel chair for travel. Has anyone Dealt with the Ghost Riders Company. Or would you like to suggest another company that you find trustworthy. I like the Ghost Riders things but they are terrible at getting back to me. They promised to call they never do they promised to email they never do. Thanks for your help.

Thank you for your years of dedication to your many patients. I’m sending you hugs across the miles.

I am also in the same boat. My legs are very weak and turning in bed is the big challenge. I got a height adjustable and head/leg adjustable hospital bed. It help a lot since my hands are getting weaker now.

I too, am a person of Faith, and believe what happens to us in our lives, is out of our hands. I was diagnosed this past January and was totally caught by surprise. After a year of searching for an answer, it was almost a relief to find out after having no explanations as to what was happening to my previous, very healthy body. I was still…

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Yes, I have had PT since being diagnosed back in January. I started reading everything I could get my hands on. I am a nurse, and spent 23+ years as a Director of a medical equipment company. One of my children also has a developmental intellectual disability so very familiar. Additionally, when I left my role as a director, I worked with…

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I am living each day more thoughtfully than ever before andI have found I can consciously developdesirable qualities such as compassion empathy and gratitude.

Rosemary, do you do any physical therapy (either on your own or with a PT) to help keep your torso and leg muscles strong?

Well I am a man of prayer and have been my whole life so I know where I’m heading. I think the best thing about learning I had ALS Is that I know my end is coming and so I have more time to prepare for it both in being with family getting my heart correctly set in the right direction.

I have just lower leg involvement currently. #1 Challenge -Getting comfortable in bed and getting a good nights rest. Still in a “regular” bed. I have a bed cane on one side and my significant others arm to “pull on” to help me turn & lay on my side because I can’t sleep on my back. Hate waking him up to bother him during the night to help me…

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Here is a helpful video:

https://www.youtube.com/watch?v=fEWTQyVtZh0

Not being able to speak, difficulty swallowing and excessive saliva

Can you recommend any videos on how to use a dressing stick?

ALS patients often experience poor sleep due to muscle weakness, breathing difficulties, and trouble turning in bed. Specialized beds, such as adjustable or hospital beds, can help with breathing and prevent stiffness or pressure sores. This website describes bed options along with helpful devices to aid getting into and out of bed.

…

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I keep my dressing stick and a grabber in my rollator. It gives me some independence when I drop something. It comes in handy besides dressing. Once I dropped my cellphone, the grabber was not strong enough. I used the walking stick to get the phone next to my foot. I squeezed the clip with my foot and slid the large hook under the clip,…

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One of the toughest things to accept was hanging up my “keys”. AFO’s and driving is a big “NO NO”

No, gave it up a couple months ago when I seemed to have regressed to learners permit ability.

Well as long as I get a decent amount of sleep, mornings are my best time. If I’m lacking, it affects the whole day 😞

I just bought one last week. Haven’t really used enough to say it really works. Fall temperatures with layers makes dressing more difficult. Working on bathrobe. Not easy yet.

I still drive, well mainly using Tesla fsd. I occasionally take my sports car for an unassisted spin.

Gun shot?

My first “symptom” was leaving work in January, 2025, when I tripped and fell for no apparent reason. I hit my head and had a cut/contusion but decided to see my PCP. Upon exam, he noticed what appeared to be a slight “ foot drop” and ordered an EMG & an MRI of my rt. knee. EMG showed a very mild peroneal nerve palsy but MRI showed a torn…

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Slurred speech and it felt like I had a lump in my throat. I had GERD so I went to the Gastroenterologist and all 4 of them were literally clueless. They didn’t think it was a result of GERD. I wanted to get in to see a neurologist, and I kept waiting for them to contact me after the referral, 6 months into the symptoms. I kept calling…

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My symptoms began in 2017 with slowing speech. In 2020 or so, my legs began to feel clumsy and I had a few falls. I was diagnosed with Parkinson’s, then various “Parkinsonisms”. My speech issues progressed, but very slowly. My walking slowed considerably and the falls became more common. In 2025 I had a positive EMG and the diagnosis was…

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I’m at my best when I get 8-8.5 hrs. of sleep. Any less than that and I feel groggy all morning. What helps my body is to move — I do 20-min. of rolling side to side, stretching arms & legs, leg lifts, etc. My routine helps relieve stiffness in my legs and helps me walk better.…

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Lately I feel tired when I wake up. Falling asleep is not a problem. When I sleep, the only sound that wakes me is gun shot. Once I slept through a two hour MRI.

I do!! Sometimes I’ve awakened early by a couple of hours and I’ve felt good, better than when I wake up at my normal time. Maybe I’m getting too much sleep. My normal sleep duration is 7.5 to 8.5 hours. My wife brings a cup of coffee to my bedside table and I have heater for it. BTW, this is a good Christmas gift idea. So I drink a cup…

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Does anyone else feel the weakest in the morning?

I just take so much time to get myself out of bed.

Does anyone use a dressing stick? I am thinking about getting one. My left arm is way more effected than my right arm.

I think i have a few more months of driving in me.

Spastic muscles, slow reaction time, and even wearing AFOs can make it really challenging to maintain control while you’re operating a vehicle. For all these reasons, I gave up driving. Now, I let my caregiver husband be the driver, and I’m the “go-along.”It wasn’t an easy shift, but I’m glad I made the decision rather than waiting until a…

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Yes, Andrew3, initial ALS symptoms differ from person to person. That’s because the muscles are not at fault; they don’t have ALS, they are the end result of our brain/neurological system suddenly misfolding our DNA when it replicates. This misfolding results in higher levels of oxidative toxins — more than our body can eliminate each day.…

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