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We are not quite ready for a hospital bed, but need something lower than our current king bed, which is too high to get into. Does anyone have experience with a sleep number bed? Or alternatives that allow us to sleep together but better accommodate transfers?

We are using Johnson in Waltham Mass. They ship prefilled syringes for 45 days at a cost of around $280 including shipping.

It was a 24 week study followed by open label extended acces. When my wife went off study drug due to an administrative halt, she immediately felt worse. We were able to resume the expanded access several weeks later. My wife was one of about 10 subjects in this phase 2 study. Dr. Babu at...

We were taking compounded relyvrio prior to its approval but started a study drug, apilimod, which interacts with sodium phenyl butyrate, so we had to drip the compound. We take TUDCA 1000 mg twice daily as does Nikki

We tried the 50 mg twice a week but there were side effects so we do 25 mg 4 times a week. Each of the syringes sent by Johnson compounding pharmacy are 25 mg

We changed clinics from the U Miami to Holy Cross in Fort Lauderdale and find the change favorable

We took medicare only to discover that Radicava copays were $7000 a month without the searchlight foundation support. We were able to get back on blue cross and the copay was again covered by the foundation.

sbstrum, I am the physician husband of a PALS and my initial approach was to run around the country based on publications and reputation. At the moment, we are much happier at a community hospital ALS clinic than the University ALS center, where the key ALS guy is never in, has no clinic hours...

We purchased a bed cane and couch cane for mobilizing from bed and couch respectively. Not sure if this would work for you