Recent content by GXTrex

Nikki have you had an NFL test? How does yours compare with ranges found in research papers? I wonder if that correlated with your slow progression?

Does ALS affect the ability to urinate? My dad was unable to urinate at all and needed a permanent catheter. His neurologist and urologist said it was completely unrelated to his ALS and was caused by other issues (such as an enlarged prostate). Is that not true? He also had severe...

Mark Cuban created an online pharmacy called Cost Plus Drug Company. You can purchase many drugs (with prescription) without going through insurance and without much of a markup. Unfortunate they dont have any ALS specific medications at the moment but they are adding new medications...

What do you mean Waves had a special design? Do you mean that Waves looks to only attack the bad copy of the gene vs both in Biogens? What is Dr. Browns approach?

Any word on if Wave's aso clinical trial is still going? Have they commented at all?

Biogen's ASO targets the V1 and V3 variants on the mutated and normal chromosome. Wave only targets those on the mutated chromosome. Hopefully that is the issue.

The report says it did not support the hypothesis that reducing RNA and DPRs would stop disease progression. It does not say if these were reduced in patients and by how much. Hopefully they weren't reduced enough? There arent many details. How long does it take to get the full results usually?

Unfortunately I do not have access to message to Dr. Harms anymore about his thoughts. He did say awhile ago that the other ASO's (Wave and Dr. Brown out of UMASS) are different enough so hopefully their results and other C9 treatments could be positive. Will Biogen try another C9 treatment...

Do they schedule you for an appointment right away or is there usually a waiting list?

Cant you stop the experimental treatment like one month before the first trial appointment? There usually are limits how long you need to be off of something to participate in a trial

We crushed pills, mixed with water, and poured down the syringe the same as we did for the formula. We got the silent knight pill crusher off of amazon. It is a little pricey but it worked very well. We started with a cheaper option but it could not crush the pills small enough to go down the...

do not draw fluid into it. we did not use the piston. hook up the syringe to the tube and pour formula into it.

We let it flow through on its own through the syringe. We did mix it with about 8 ounces of water first. This helped my dad get his daily water intake and also thinned out the formula so it would flow faster.

I agree. We tend to forget that PALS can have other issues besides ALS. My dad got significantly worse over a few days last year. Luckily we brought him to the hospital and he had a UTI and pneumonia. These acute issues were treatable and he went to rehab.

My dad threw up bile a lot at night. We took him to the hospital but they found nothing wrong. An ALS nurse suggested we spread out his feedings more. We fed him 3x a day (he was on a feeding tube). We were giving him his last feeding at 5:30 pm. We moved it back to 9:30 pm even though we...