Atypical slow progession ALS , search for caregiver, meds update

[steve913]

My symptoms started with left drop back in nov 2024 , i posted my story under newly diagnosed. I use a walker since late february 2025. i feel fatigue and unbalanced and am losing grip strength on left side.

Who determines if you have slower progression Als ? Im assuming your care team at ALS treatment center. I have 1st appt on June 16th at UT San Antonio. I was thinking of going on the Next Door Neighborhood app to look for a caregiver (s) or contacting several nursing schools. I have big furnished house w 3 guest rooms so can provide free room and board and a weekly stipend and use of vehicle if necessary. Im not impressed with the care services here( Hourly and expensive) doesnt fit my needs.

Lastly i tried Rilusole 25 mg for 1 day and felt it interfered with the Trazadine 2mg for spasisity got lot of leg jerking spasisity, no other side effects so I figured i would wait until June 16th and maybe ease into it ( half dose) after discussion with Neuromuscular Dr

Any thoughts, experience and advice are most welcome

 

[Nikki J]

There isn’t a formal definition of slow progression though sometimes trials will make their own if they want subgroups or to exclude slower progressing pals. Otherwise your neurologist would tell you after a few visits. Mine did on my 3rd (6 month) visit. For others it might take a bit longer to evaluate

Nursing students might be a good fit for you or perhaps pre nursing who are taking basic courses before clinical

I tolerate Riluzole very well and have from the start. I am lower motor dominant and have never taken an antispasmodics but my sister took riluzole and one and didn’t have any issues. Every one is different though

 

[steve913]

Thank you Nikki

 

[Chad2211]

Hey Steve,
I feel as though I'm in your boat. Mine started with right foot drop and is affecting me very similarly. Riluzole is tolerated with my Trizanidine and baclofen. It's radicava ors that gives me some side effects. I haven't been told that I have "slow progressing" als but I've only passed year one.

 

[steve913]

Chad,
Are you using walker? Was it hard to get Radicava? I see my neuro here in San Antonio on June 16th and will get assigned care team
Sleeping is a challenge with the intermittent spascisity and the urgency to pee.Just started Riluzole and been taking tazanadine for 1 month it helps. Have you got a care giver or help at home? I hope I can make 5 years, started nov 2024 Im 69 1/2yrs old was in great shape before this