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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My first reaction would probably be concern and uncertainty, especially if the symptoms seemed unusual or kept getting worse. I think getting checked by a doctor early and keeping track of how the symptoms changed over time would be helpful. It’s interesting to hear how differently everyone’s experience can begin.

It is interesting how different everyone’s first symptoms can be. Some people notice weakness or difficulty using a hand or leg, while others first notice changes in speech, swallowing, or coordination. The uncertainty before getting a clear explanation can probably be one of the hardest parts of the experience.

The ALS Association has a…

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Hiya, thanks for asking.

I applaud the overall very positive nature of this forum and found it helpful in many ways. The one “elephant in the room” that is missing is about dying with ALS. Our culture is quite hung up on hope, beating ALS (and other terminal diseases), joy, and happiness. I understand the need for that.

Meanwhile, though,…

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Living with ALS, many people gain new perspectives on empathy, relationships, and human connection.

Although I found that most of my friends maintained our relationships, others slowly drifted away. My caregiver husband and I have deepened our innate understanding of when we need “alone time.” I don’t think we would have developed this…

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I went to the gym three days a week and worked out with a trainer, My left arm was getting weaker and my right arm was stronger so lifting a bar my trainer had to support the left side. Then one day i was pulling down and he told me look at my hand. The muscle between the thumb and pointer finger was gone. I went to a hand doctor who sent me to…

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I was diagnosed (EMG) on August 28, 2020. Looking back, I quit taking Celebrex (anti-inflammatory) for my Osteoarhtritis around the end of 2013. Celebrex had come to light as a heart concern at that time and it was popular for Doctors to take you off it to be safe. I was not put on anything else to replace it. This cessation may have been…

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Hi everyone, the ALS News Today team is looking to improve how the forums and groups on this site work. Our goal is to improve the experience for everyone so that participating in this community is easier and more valuable. If you have any specific suggestions for improvement, complaints, or experiences you’d like us to know about, comment…

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My first symptom was in my left hand. I was carrying a bowl of soup and I almost dropped it onto the floor. And I was serving guests. From there I started getting muscle cramps up my left arm and my left shoulder started to jump around. This lasted for about 5 months before it crossed shoulders to the other side. My response at first was to…

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Living with ALS is often a journey filled with unexpected turns. Many people recall a moment when they realized something wasn’t quite right. I remember tiny muscle contractions in my thighs and restless legs while sleeping.

What was your first sign or symptom, and how did you respond to it?

I have been thinking about getting myself a grabber. What length do you recommend?

I have learn to adapt. In my rollator I have a dressing stick and a grabber. The grabber

gives me the ability to pick up anything I drop. The dressing stick enables me to pull my pants up when using the toilet.

Sometimes a single piece of advice sticks with us for years. Maybe it came from another person with ALS. Maybe it came from a care partner, a physical therapist, or a friend. 

What’s the best advice you’ve received about ALS?

I’ve learned not to assume that everyone experiences ALS in the same way (symptoms, pain, resilience, etc.)…………… I just wish non-PALS would understand that as well.

you have enough baggage in your own life that you seem to not take in as much from others

Living with ALS changes your perspective. Sometimes it changes how you view work, exercise, friendships, travel, and other life priorities. 

What’s one thing that ALS has made you rethink? And how has it shifted your perspective?

An inspirational life! A strong life!

I said immediately to my neurologist, “that is a death sentence.” I did not know much about the illness but I did know that. After getting over the shock, I fully accepted my fate. I have had MS for 43 years already. I think all of the things I have been through with MS helped me to get through this idea of having ALS. I tried everything to…

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I did the same thing as you. Only my wife knew about it. I did not tell the kids for years. My thought was first I didn’t want them to worry. Our youngest wasn’t even finished with highschool. The other major factor was I thought, well they can’t fix me so I need to motor on with life. I had a family that needed me so I tried to be a…

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At first, I didn’t want to tell anyone — almost as if ALS was my fault. Once I shared the news, everyone was supportive and asked how they could help me.

Even though living with a rare disease such as ALS can be immensely challenging, I  am grateful for a few positive things it’s taught me. For example, I’ve made connections and friendships with pALS who live worldwide. I’ve also learned not to push through pain or stress, but to listen to my body’s signals when it needs to rest.

ALS can make…

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Being diagnosed with ALS can seem overwhelming. It’s completely natural to feel shocked, scared, sad, angry, and a long list of other emotions. Along with allowing yourself to feel all of those emotions, it’s important to take steps to accept your diagnosis and begin living life with ALS. 

For me, it took almost a year to conquer my mental…

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A hearty congratulations to you and Rhonda on your 50th wedding anniversary! Thank you for sharing these photos. You both look wonderful, and your family photo (with all the grands) is…. well, one happy family indeed!

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